Seeks Coffee and Grace

Let's get this party started.

2011-12-17T08:14:00.003-05:00

Today marks the milestone of making it officially "full-term" with twins: 36 weeks. Prematurity is most likely a worry of last month and I'm hopeful that these girls will get to come home with us in a reasonable amount of time. This is - big sigh- comforting news.

But why am I still waking up at 4 and 5 am with anxiety about the coming days? Looks like these little people will be coming out sooner than I expected.

I had a great ultrasound on Thursday morning at the high risk OB. Everything looked great- the umbilical cords, blood flow, heart rates, movement, etc. The world's greatest ultrasound tech decided it would be a good idea to get some current weights on these babies and the grand totals equaled just over 13 pounds. Holy schnikes. Baby A is estimated at 5lbs, 5 oz and Baby B at 7 lbs 12 oz. I was immediately alarmed by their size differences, but no one else seemed to be. The doctor kept joking about the 12-ish pounds of baby in me and how if I was his patient, I'd be in the OR in 20. Ha ha, not funny. That is why I am not his patient, although he is great at what he does. He told me me was writing a letter that day to my normal OB recommending these babies be born by next Friday, 6 days from now. However, he was fairly sure I'd be in labor by then anyway. He said that his recommendation was based on the fact that these girls are identical twins, sharing 1 placenta. Does my placenta look like it is aging? No, it still looks great. It's a caution thing....which I get, and I don't.....but mostly, I get.

It wasn't until later that night that I got a call from my regular Ob's nurse asking if I could come in at 9am (opening time), that I started to get quite nervous. We did a non-stress test, which we all 3 passed, and an internal exam before the doctor said a word about what he was thinking. I was surprised that my blood pressure could still be classified as "perfect." I honestly haven't been that nervous for a long time. I thought about yelling, "Oh shit!" and laying in the fetal position on the floor with a binky. But, instead I pulled my big girl pants on and acted like a mentally stable and mature adult ( it is usually more socially acceptable.)

He was quite calm and kind as we talked, explaining the thought process to getting to this conversation, including a late night talk between the 2 doctors. When they started to really look at the weights of the babies, even with the potential for 30% error either way, it was still enough to wonder if Baby A is still getting what she needs. She has only gained about 1 lb in a month, where her sister may have gained 3. So, Tuesday is induction day unless I can get this party started on my own.

Now, many of you have been induced and you were fine with it. I should be because I've been mentally preparing for this conversation for 30+weeks, but, I'm not. I've been known to talk about the induction and c-section conspiracy on occasion. I am familiar with "The Cascade of Medical Interventions." I know the increased risk that a twin birth brings and all these compounded things equal a very shaky situation which has a high probability of ending up in a c-section. (Cue another "Oh, Shit" here.)

Hear me here: I will do what is best for these babies. I care way more about their safe arrival than I care about scars and inconveniences. I am not looking to hear your c-section story; I've heard all that and have friends who would have babies no other way. When it comes down to it, Nick and I will make the best decision for these girls. Bottom line.

But there is the fear of the unknown and the total lack of control. When Owen was born at 40 weeks, 2 days, my water broke at noon and at 4pm the contractions started. He was born at 7:30pm that night. It was a very quick first labor and I opted for the tub instead of pain meds. Ella's arrival was even faster. My water broke, 5 minutes later my contractions started, 90 minutes later she was born. No meds and no time if I would have wanted them. My husband and my midwife almost didn't make it!

I immediately must clarify that I am not bragging or trying to sound like a super hero for not having drugs and having fast labors. My body was ready, fast labors run in my family and quick does not equal less pain. These were 2 intense experiences that were good experiences in the end and that is all I know. I don't know what happens when my body is pushed in to working with pitocin, an epidural and the inability to walk the room freely.

And so, the pressure is on. This weekend my job is to go in to labor on my own. Or at minimum, get this cervix ready to go so that I don't need much prompting come Tuesday morning. I am doing all the tricks I know and praying like crazy and manipulating my mind in to imagining everything going perfect. (my default is to imagine an emergency c-section. NOT HELPFUL!)

I haven't shared this publicly yet, but the high risk Ob's love to talk and laugh about my cervix. (in a good way) One doctor says my cervix is "deluxe," which meant each time they measured the length it was double the length they wanted it to be. The other doc said it was so long, it was practically falling out. Although disturbing this may be, it was a real blessing with twins. I felt like that crazy cervix was built for carrying twins to term. But, now, I'm hoping it thins and dilates quick and on its own. The deluxe-ness of the situation is no longer helpful; we've got to get this show on the road!

So, send your prayers our way. And your good thoughts, vibes and whatever you've got to spare. We will take it all. We want 2 healthy babies and I would love to go in to labor on my own. Assuming all is well, we will have these babies home by Christmas.

And I would like to address one other thing that many have asked about: the likelihood of having another child born with Pierre Robin or a cleft palate. We don't know the chances because we have never done genetic testing for Ella (scheduled for January in Indy). But, naively as it may be, have always felt that was more random than anything. These babies are identical and so if one did have it, so would the other. However, from what they can see on the 15+ ultrasounds I've had, their chins and faces look normal. Coincidentally, my 1 ultrasound with Ella looked normal too. We opted out of all the early tests and the 4D ultrasound in Indy for our own self-preservation. There was nothing that can be done anyway. So, after about 20 weeks, I just stopped worrying about it. If they have it, at least we know how to manage all the complications. If they don't I will cry with joy and consider the fact that 2 healthy babies have to be easier to take care of then 1 sick one.

I'm not quite sure when, but I plan on feeling in their mouths early on. We will also be able to spot a recessed chin immediately this time. I'm more curious than worried about it these days. I've felt peace deep in my heart for months surrounding this issue and all I can do is keep calm and carry on from here.

Probably won't be back here for a while, which may shock you after 3 posts in one week (and 3 in a year before that!) But, I'm preparing for having no free time for about 5 years. If you want to know what is going on, permission to Facebook stalk granted.

Oh yea, and if you come over at all in the next 2 years, you are bound to not judge my dirty house and are forbidden from letting your mind wander to the show "Hoarders" or from thinking it looks like a dirty version of the Babies 'R Us showroom. :)

Keep Calm and Carry On

2011-12-16T18:00:00.001-05:00

I want to update you all on Ella and her of speech/health stuff. After 2 years of driving around the state of Indiana searching for an answer, we found a surgeon who had some ideas. It only took about 5 minutes for him to win our approval. We immediately scheduled surgery for the week school got out in June and began mentally preparing for what was to come. This was not a quick fix, but it was a chance-- a long term commitment to her communication. There was an easy surgery that might work and a complicated, long surgery that probably would work. We trust him and agreed to try this simpler surgery first in hopes of avoiding the complications that can arise with option # 2, like life-long sleep apnea.

I have to brag on the the doctors, nurses, assistants and everyone at Peyton Manning Children's Hospital in Indianapolis. They were amazing. Ella has been a patient at several different hospitals and experience wise, this was hands down the best. She nor we even had a chance to cry or be scared during our whole trip, as they kept us smiling and eating orange sherbet the whole time. If you need a good Cranial Facial Clinic in Indiana, skip the trip to Riley and go see the Dr. Blocksom's team. We have been so impressed.

The surgery went perfectly. It was a procedure called a Z-plasty, where they were able to make her palate 75% longer.

And she got to drive herself to surgery in a jeep.
The hardest part for us was after surgery. Ella came home needing to be spoon fed for 8 weeks. This is quite difficult for an independent woman who goes to a Montessori school! But, she didn't want to tear out her stitches and would remind us when we accidentally handed her an utensil. Right away, things got progressively worse with her speech. Her muscles have all been moved to the back of her mouth, which means it is relearning time again. One step forward, two steps back. And all the progress she had made with sounds and being understood was pushed back to 2 years ago. It was a haunting deja vu. But, emotionally worse because she is so much smarter and aware. We cried a lot together this summer (partially from double pregnancy hormones) when I couldn't understand and she couldn't be understood. I imagine it was 1% of what it would be like to be deaf in our hearing world.

But in the past few months, we have seen small improvements. Her speech therapist has seen a bit more movement from her tongue and we have a V, people! Anytime we can add a consonant to her repertoire, we are opening the door to so many new words that people can now understand. It's not perfect; it's still completely emotional and near impossible for strangers to get more than a couple words. But, all we wanted was a chance and I think Dr. Blocksom gave us that.

Nick is set to take her back to Indy in January for another follow-up with the surgeon. At this time, they will scope her throat again and see if the muscles will ever be able to learn to work. If not, Plan B, which really feels more like Plan Z. Another surgery in the summer, this one much longer and more intense. A last resort for now. But I'm hoping not to go there. Most days, the hope is all we've got left. I know hope is never a promise, but God hasn't abandoned us yet and if he can grow an "impossible" muscle in her eye, then helping some muscles move doesn't feel like such a stretch. First day of school 2011

In other news, Owen is a kindergartner this year. He is eagerly and impatiently learning to read. He loves math and is quite good at it. My math skills will be useless to him after 4th grade and I'm serious! He is a good friend to everyone and overflows with compassion. He has been writing "I heart Angie and Nick" on everything. His future plans are to be a ninja and be married. That is about as far as he has figured out.

Sometimes I feel bad thinking of him reading this someday and wondering why I didn't write more about him. I hope he then finds this sentence: Owen, without you, I wouldn't have been able to get out of bed during all these hard things. Your heart is made of pure gold and we love you, not because you were easy and a parent's dream, but because you are a light in the dark. And yes, you are the bomb.

I don't think you're ready for this belly...

2011-12-11T12:32:00.010-05:00

35 weeks! The relief in making it to 35 weeks and 4 days is a joy that is hard to put in to words appropriate for all readers.

I've been living from Saturday to Saturday for about 8 months now. Each Saturday morning, an alert on my phone congratulates me on making it one more week and telling me that my babies are the size of blueberries or kumquats. But yesterday morning, as I struggled to come out of my exhaustion coma, my alert came through with great news: my babies are the size of honey-dew melons. That puts their weights in the area of 5.25 lbs+ per baby.

Most of my pregnancy was a total blur, but I can tell you what I did just about every Saturday because it seemed like the only day that mattered. 35 freaking weeks. That is the average week twins are born, BTW.

And it really does take all these weeks to be mentally ready to have a baby. A flip has to switch between "please, God, keep them in" and "get these babies the hell out of me." My flip switched just the other day.

Friday night Nick and I went on a hot date to the grocery store to stock up on some gluten-free things that I would need in the next month or so. And coffee. We have a stock pile of coffee right now. We think running out of caffeine with 2 new babies could be a devastating affair.

My trips to the store over the last 2-3 months have all been the same: inquiries from obnoxious strangers about my due date, if I'm having twins, did I think I would deliver right there in the cereal aisle? I've been cordial so far, usually just letting them think I'm due any day with 1 baby. (If not, I am opening the door to questions about c-sections, breastfeeding and infertility treatments) But after Friday, all I have to say to all of you busy bodies is SCREW YOU.

I'm obviously tired (you let me know) and hormonal (duh) and all you should say is:

YOU LOOK GREAT! WHEN ARE YOU DUE?

And when I respond with:

I STILL HAVE A LONG WAY TO GO; I'M HAVING TWINS.

You then say:

WOW, YOU ARE 30+ WEEKS WITH TWINS AND LOOK THIS GOOD? AMAZING!

We then part ways, me with a smile and you knowing you did a good deed. It is a win-win.

But this week, as I approached a grand milestone, your reactions changed severely. On our hot date the other night, I caught a lot of giggles, a lot of "whoa, she is overdue" and several gasps. A few people looked at me and laughed. Now, we can all get paranoid from time to time and I am no exception to this, but my observations were real. I was the Friday night spectacle and Meijer and I hated it. I couldn't decide how to respond: dirty looks, middle fingers, hateful words. Could this be the day I use my rehearsed response? I'M PREGNANT WITH TWINS, YOU'RE JUST FAT! Even with all the extra hormones I have, I couldn't do it. I just pouted instead. I yelled at Nick when we got home, ate a whole large box of Mike and Ike's and watched Glee on the couch.

What these ignorant shoppers don't know is that I am growing 2 babies, as in more than 1. Being pregnant with twins does not feel like being pregnant with a singleton plus 5 or 6 extra pounds. This experience required ultrasounds every 14 days, cervical length checks every 14 days after 24 weeks, extra nurses and extra doctors. Not to mention, the risk of Twin-to-twin transfusion, the fear of gestational diabetes, placental problems, not gaining enough weight and the constant reminder that my babies could very well be extremely premature. They don't know that I can't walk without the use of my Prenatal Cradle and no, my bra is not on backwards. They also don't know that I am very fortunate not to be on bed rest, as my overstuffed 35 week belly measures 44 weeks.

Yes, I look like I'm 4 weeks overdue. Don't hate.

I try and remember that most people don't think and their ignorance causes them to do and say rude things. Still, I hope the general population exercises kindness and politeness, especially at Christmas.

And especially to those of us with cankles who are waddling as fast as we can.

Because you all love me, I am trusting you with my first released pregnancy picture, from yesterday - 35 weeks and 3 days. Enjoy the belly; I worked hard to get it to look like this!

Big, Huge, Over-stuffed Announcement!

2011-08-22T11:56:00.005-04:00

Well, it's about time I spill the beans.

It's not like if we saw each other out and about that you could get away with "not noticing" the ridiculously huge, ever growing elephant in the room.

And while we are on the subject of elephants, did you know they stay pregnant for 2 years? If animals get in to heaven, I think God will have some serious explaining to do.

Fortunately for me, I only have to stay pregnant for 19 more weeks (which may feel like 2 years by the end of it!)

Somewhere between Christmas and New Years, the Liskey's are expecting a 2-for-1 present: identical twins! There gender has yet to be revealed, but as for now they are healthy and growing appropriately!

We are excited and stressed and have a to-do list like you've never seen. ( I even got Nick to paint the inside of a closet yesterday!) The word "blessed" is so overused and "doubly blessed" sounds even tackier, but we do feel quite fortunate to experience this. As a kid, didn't you want an identical twin to have a secret language with? Trick your parents with? Share clothes with? Was it just me?

To answer all the pending questions up front:
- Yes, twins run in my family. My grandma had 2 sets of fraternal twins, one being my Dad. Nick's dad is also a twin. However, identical twins are totally random. This doesn't have to do with genetics (from what docs know now).
-Yes, they will look identical and yes they have to be the same sex. (There seems to be a lot of confusion with this issue. )
-No, we will not be using rhyming names, much to Owen's dismay. PJ and DJ, Bill and Will, Rob and Bob will just have to be "great" suggestions for some other pair.
-Yes, we will be taking legitimate name suggestions. Coming up with 2 names that sound good together, we both like and most importantly, Ella can say right now is quite difficult!

A twin pregnancy is definitely a different experience. From the first moment, the nausea was more, the cravings and calories needed were more, the exhaustion was off the charts. We made jokes that double sickness was double babies, but who really thinks that?

I had an intrauterine bleed for a while, but that resolved itself. My blood sugar was high, but now is great. I'm eating so damn healthy that I should get some sort of award for even attempting 200 grams of protein each day. (The award being 2 healthy, full-term babies, I mean!) Lot's more things to worry about, to know, be aware of. I'm trying to avoid a NICU reunion if at all possible. I'm also trying to keep these babies in to 38 weeks. That's the ultimate goal and would put us in that target week between Christmas and New Years. At 38 weeks, they would most likely get to come home with me in a few days and we can start this new version of our life.

More to come about all this as it progresses. (Which means as I look more and more like OctoMom and less and less like a human! :)

I try to keep it all in perspective...

2010-12-23T09:04:00.004-05:00

Things could be harder, different, more exhausting.

Lots of kids come in and out of the therapy doors each day. I try and make friends with the moms, nannies, grandmas, dads, hoping we can connect on some level to make the loneliness feel like less. I am very aware of how Ella looks compared to the other kids --so cute and looking so normal to them. And so I get ousted, instantly, because they think “That family is here to work on the ‘th’ sound. They’ll be gone in 6 weeks.” Not worth investing in short-timers.

But then they hear her talk and invite me to join their club.

***

I ran away to the beach a couple months ago hoping God would heal my soul. I was feeling like I was not doing enough at anything I do. Owen wasn’t getting all the time and touch he craves and I don’t take him to the park enough. Ella’s pile of speech words and tongue exercises was approaching the second story and I was more than overwhelmed. Nick was going to be gone for the next 18 hours or so—other than sleeping—so we got the hell out of dodge.

It was mid-October, but the sun melted our skin like May or June in Technicolor. The leaves had mostly turned, but still hung from the trees. Michigan in the fall has got to be as close to Heaven as we have on earth—well, Midwest speaking.

They rode their bikes to the beach as fast as they could and sprinted to the water. Owen began finding and skipping rocks immediately. I think it’s one of his spiritual gifts; Owen is nearly a professional. All my rocks hit the water with weight and force, as his moved like those weird little flying squirrels in the air. But after 10 minutes of successful lessons, I was sinking less and skipping more. Apparently, I could be really good if I “practice every day and never give up.”

Ella asked if I’d strip her down to the nude so she could be one with the water. Naked. My response sent her pouting as she threw her clothed body in to the surf. She would run away and be a mermaid if I let her. But I won’t and this makes her very angry. It’s a private beach and that view is not what they paid a million dollars for!

I just sat in the warm sand, taking pictures with my phone, wondering what was next. How do I stop being so worried about my family and the world? How do I move on from feeling like I’m not good enough or strong enough for these tasks in front of me?

I prayed an Anne Lamott-ish prayer because it was all that made sense: HELP, HELP, HELP!

***

Nick had recently taken Ella to a famous ENT at Riley Children’s Hospital in Indianapolis. This appointment took 6 months to get and there was a lot riding on what was said. In the spring, Ella had visited a group of doctors and specialists called the “The Cleft Clinic” at our local hospital. All at once, an oral surgeon, orthodontist, pediatric dentist, plastic surgeon, nutritionist and speech therapist bombarded us and wanted a 2 minute synopsis of her life and problems to see what they could offer. The consensus was to wait 6 months or so and do a frenulectomy (a procedure for kids who are “tongue tied”) and see what happens. Instead of the traditional way, the surgeons were going to laser on the sides of her tongue and see if that loosened up her tongue enough to make the sounds she needed. I was scared to death, but was excited that there was an option. They said, “we can’t promise it will fix everything, but it will do something." Sold. When can we sign up?

But not long after that, our beloved surgeon*, called me—alarmed—because he has received the report from the cleft team. He wanted to see us right away before anyone did any cutting. Dr. Danahey looked in her mouth again and again, moving her tongue this way and that, to make sure. He didn’t see what they saw and more so thought it could possibly damage her nerves. To top it off, she may have to relearn some of the feeding skills we’d worked so hard to have. My heart sank as I agreed to see one of the best ENT’s he knew before we made any decisions.

(*If you need a cleft palate or lip surgeon in the midwest, he is the best!)

And so this was our third opinion. Nick had a list of questions to ask, any of which he forgot would equal an early death for him. I was at home with a back so full of pulled muscles that I could hardly stand or sit or lay. Nick didn’t call me right away, which worried me. And then when he did, I wish he hadn’t. This doctor, too, felt the surgery was not a good idea. Negative consequences may not be severe, but not worth it with the advantages so small. Nick braced himself to hear the words, “She may never talk normal.” Solution: Speech therapy, speech therapy, speech therapy.

Nothing miraculous; just work.

***

The waves never parted and the sun never stood still, but I felt God was there. He was in the trees and the air and although everything in my head was shouting, “YOU ARE ALONE,” I knew I was not.

And impressing on me strongly was the solution for now, for this day: Get up and take one step. The pace and direction didn’t seem to matter as I stood. It was about not being frozen anymore; moving in some direction. So I pulled my big girl pants up— literally, as they had become a bit lose in the surf—and gathered the children and bikes and headed back to the Inn.

Owen left us in his dust as Ella and I were trying to fix her pedal which has a habit of falling off. And before I knew it, we were nearly keeping up. Running, laughing and crying all the way, holding my big girl pants up with white knuckles, but dammit, they were up.

It wasn’t everything, but it was something.

Appreciating the tulips today...

2010-09-27T20:28:00.002-04:00

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

On this day...

2010-07-26T09:58:00.003-04:00

On this day, 7 years ago, I got up early in a rundown hotel room on the far end of town. I found my BFF gluing pearls on to a long piece of tulle and my other best friends smiling all around. I stopped for a frappa-something because I'd not gotten much sleep and went to a fancy tanning salon to dry and zap the zits that had developed in the previous hot and sticky days. I was rushed, as I always am - even today - but still, excited.

A bee landed on my bouquet moments after I received it and my quick jerk and shake of the stem, caused it to turn back in to loose fresh flowers. And even though the photographer's camera broke and the cake caught on fire, I still managed to have the best day of my life.

Happy 7th Nick - there is no itching here! I still don't hate you.

And thank you to my cousin, Cole, for sharing his special day with us on his 4th birthday all those years ago. You are 11 today and I'm watching you drink coffee, you old man.

Save the Drama for yo Mama!

2010-05-06T11:44:00.003-04:00

I haven’t written much lately. We’ve been busy buying a house, renovating that house, moving, going crazy, fighting over tile, watching SVU, etc. It’s been an “exciting time" and blogging has not been a priority. That's one of the reasons.

The other reason I’ve been on hiatus is that my blog has been “found out” by some new readers. It seems as if everyone I know has been secretly reading, feeling guilty that they may have stumbled upon my diary. This is no diary. I do understand that this is a public forum that I have chosen to express my life and opinions. Don’t get me wrong, I’m glad you are here. But now that you are, I will stop typing about you. Just kidding, I don’t do that here – I save that for my other blog. (Kidding, again) I'm just learning how to navigate all of this without censoring it all. You know, the worst part about censorship is *********.

Recently I ran in to someone I rarely see and as we parted ways, I say “See you soon, I hope” which was followed by a “Keep blogging.” Wait----what? How did this happen? Oh well: WELCOME.

When I started writing here, it was when Ella was a teeny tiny baby. It became my sorry, sad, sappy journal when I finally came to terms with the fact that I type faster than I write. First, I only allowed my best friend Brooke to read, as we lived hours away from each other. Then, my friend Sam--as he was always keeping tabs on Ella, me. After I realized they still liked me, I invited Nick to read. Yes, Nick my husband was #3 on the list. Not because I love him third, but because he was living it and sobbed like a baby every time he read on screen what was already consuming our life. Plus, he kept shorting out the keyboard with all those tears . It was becoming a safety hazard.

Hello, Papa. This is what I meant when I told you about “blogs.” I just type and it magically gets here.

The other reason I stopped writing was because of some criticism I got regarding 2 particular posts: "Vodka Babas" and "Shalom."

“Vodka Babas,” which really wasn’t about alcohol at all, caused quite a stir. Supposedly, mothers shouldn’t drink (but it’s ok for Dad’s!?!?) and 2 drinks is enough for most to take their shirts off. I was blogged about. It was quite exciting--- actually, it was quite infuriating. You’d have thought I committed an offense worthy of a beheading, or worse, DEFRIENDING ON FACEBOOK! Oh wait – I was!

That whole shirt issue was news to me – I must be drinking the wrong stuff!

“Shalom,” was a true pouring out of my heart. But one reader, who found me through Google, was completely offended over my use of the word Shalom. She said I didn’t understand it and had no right to use it. Her issue was that I’m not Jewish and apparently, it is a patented word. This did not hurt my feelings – it made me think that we all need to loosen up a bit!

But I’d be lying if I didn’t tell you the whole story – the part where another woman who lives in a country far away, googled “shalom” and thought it important enough to email me personally and share how she is looking for a little shalom of her own. She was thankful for my words. I also got a special shout- out from my favorite famous blogger, whose link to “Shalom” under a section called “Bitches I love” brought the strongest sense of pride I’ve ever had being called a bitch. Thank you, Stefanie Wilder Taylor-- I'm proud to be your bitch!

I also ran in to my favorite child birth educator, Amy Murray, at our galaxies biggest black hole: Wal-Mart. She was shopping for a party, but stopped me to ask my permission for her to read “Vodka Babas” to her classes. She thought it would make her prospective parents laugh and show them how life changes when you’re a parent. Amy said “It’s not even about drinking!” Amen sister, amen.

So really, I was just acting like a sissy. Sorry about the drama. Moving on.

In other news, we are 2 weeks from actually living in our house, completed, painted and cluttered with toys. My children are excited to play with toys again made in the 2000’s and I’m excited to throw all the things I don’t want the world to see in my basement!

Pictures to come when the dust (literally) settles. Until then, keep yourself safe and caffeinated.

Smooth-ish transition.

2010-02-12T13:19:00.005-05:00

Everything is changing.

First off, we are buying a house. It's lovely, a "Dutch Colonial," I hear. I don't know what the hell that means, but I nearly gasp everytime I see it. Just ask the neighbors, as they have seen me parked out front for an hour or so. I like to imagine the kids running past the windows and roller skating on the wood floors. I see them in the front yard-barefoot in the grass- while Nick and I swing on the not-there-yet-porch swing.

It's not ours yet, but we are close. We have been hearing "any day now" for several weeks. I'm not sure if this falls on the realtor or the mortgage company, but dangit, HURRY UP.

See, I don't know if you knew this or not, but I like smooth transitions. It's my secret passion. If we would have stayed in Hollywood any longer, I may have ended up being a famous producer, making sure all was well. I'd be paid billions of dollars a year and have all the best parties. I would have to hire someone to make sure all was always well and that we never ran out of salsa and tequila. That's right people: even if I was rich and famous, I'd still serve chips and salsa and margaritas every chance I got. I hope you would appreciate my "down-to-earth"-edness.

When planning our wedding, I was told to decide what the most important things were for me. These were things that I'd lay up at night in the months following the wedding and dream of doing another way. Did I want to spend thousands on bows for the chairs? Did I want hand-cut, hand-made paper confetti blessed by Jesus falling out of the invitations when opened? We thought long and hard (for about 5 minutes) and I decided for us 2 non-negotiables: a party that people would never forget and smooth transitions.

I got both. I really did. And since those were my main focus, I didn't melt when my cake caught on fire and fall part when my bouquet did. It was hilarious all the things that went wrong, but dammit, no one starved while we were off taking pictures.

So anyway, this whole house thing has taken forever. For the first few weeks of the negotiating and waiting process, I had ---well, let us just be polite and say the same after-dinner feeling I experience with Indian food. It was awful. I prayed, at least, that I was losing weight while I lost everything else. (Why not?) But, now, now I'm just annoyed. I want to move. I want to buy new furniture. I want to have a basement to hide my crap.

It has been quite the pleasant distraction with all the other things going on. Sigh. Sigh. Sigh.

Miss Ella is 3 today. And thus in celebration for her birthday, she has given me a 3 hour nap. Owen, actually, is still sleeping too. Did Nick drug them as my present? Who cares. I'm trying to type fast!
You should have seen her this weekend, picking out toys at Toys R Us. She was giddy and delirious and in serious melt down mode by the time we were finished. I kept picturing the Bearenstein Bears "Too Much Birthday" book and wishing we'd just ordered her presents online. Nevertheless, she did quite enjoy herself and I do have hope for very exciting shopping trips with her in our distant future.

Three years is so much more symbolic for us than it sounds. Age 3 is when she "ages out" of her early intervention therapy program (First Steps). No more at-home therapy and on to hospital-based care. In case you were wondering, Ella does not fancy hospitals. Crap.

But, she does love people who love her and if we find the right people, all will be fine. For me though, it hasn't been quite that easy.

It wasn't as if Carol, Miriam, Stacy, Brenda and Angie all left on the same day. No - they felt the need to torture me greatly and spread out their goodbyes over the span of 2 weeks. Just when I stopped snotting all over my shirt, another therapist (friend) had to go.

I decided it was important to let myself grieve appropriately over the loss of these relationships. And I did. And they cried too. I wonder if I can do this without them. If you remember back that far:
Brenda - Nutrition started at 1 month old
Carol - Speech started at 1 month old
Miriam - Physical Therapy started at 6 months old
Stacy - OT/ Cranial Sacral/ Yoga started at 18 mos
Angie - Social Work started last December ( but I feel like I've known her forever!)

I'm attached and dependent and will miss them greatly. I don't know how to do this all on my own because my support system has been so great. But, then again, there is a season for everything and it's my season to step up and do what needs to be done.

It makes it easier that Ella is so darn cute and thankful. Incredibly thankful - you should see her open her presents, like she's been living in poverty - receiving the first toys of her life. She is so smart and understands enough to know that it is important to try - try to eat, try to talk, even when the words are hard.

Owen keeps telling me that it will be alright. He is sure of it. I think back on these past 3 years and realized how much more difficult life would have been with a different first-born. A whinier, uglier and more demanding child would hate me right now when he visited me in the Home. Owen overflows with compassion and empathy. He's the nice kid. It all seems a little too strategic on God's part.

"Mom, it will be OK. Remember: when someone you love goes, there memories stay in your heart. Don't worry."

I'm hoping if I hang out with him long enough, I'll catch what he's got.

Shalom

2009-12-24T10:16:00.004-05:00

I chased Ella today through Trader Joes today. She had one of those mini carts that fits just right, filled with things she loves like hummus, tomato soup and Candy Cane Joe-Joes. I like watching her walk through my favorite place with authority and confidence. Right now, she doesn’t remember all the things that stress us out.

I’ve been finding myself a bit lonely lately. And to be honest, I’ve been feeling quite sorry for myself. My mind is attempting to wrap around ideas like “your child may never talk” and “she might need a computer as her main source of communication.” I’m finding it quite difficult to do. I’m unsettled. I do not want to accept these things as my reality. I’m still hopeful. I’m still ridiculously hopeful on most days. Or at least I’m trying to be. Or at minimum I’m breathing most of the time.

The constant comment lately has been to the tune of this: Ella’s tongue is too small.

And of course, as the one who cannot afford to give up, I got a second opinion. And a third. And a fourth and then I just stopped asking. And I stopped praying. And she stopped asking me to pray for her tongue, too.

Next, I got pissed. Why the hell does my kid have to have all these problems? Why can’t we have some resemblance of “normal? Why does everyone else’s kid talk so well?

You should see me as I watch these early talkers I often meet—just like my Owen. I eat up every word they say, listening to the intelligibility and articulation. But then, those feelings quickly turn to jealousy and anger and then we do a full swing around to sorrow. I know I’m not the first person in the world to go through all this, but it feels like it. And my brain can’t make my feelings change their mind.

Ella’s surgeon, Dr. Dan Danahey—or “Hi Ang, this is Dan” as he says when he calls me on the phone—recommended we head to a major medical center for a fresh perspective. We have the best therapists around, but wanted a non-emotionally attached opinion. I made an appointment with the cranial-facial clinic at Peyton Manning’s Children’s Hospital in Indianapolis. We were to see a Speech Therapist who would listen to Ella talk and give us an extensive amount of big words that were all going to be a filter for the 2 words I was looking for: yes or no. Everything else is just fluff.

If it wasn’t one thing this morning, it was another. Ella had no clean shirts, I had no clean anything. I had to pick up a prescription for my Dad and also one for me. Owen had to be at school at 8:30 today, which we found out at 8:15. And while I was sitting lazily in CVS' version of the massage-chair-from-heaven, I got a call saying the Speech Therapist is sick today and they would like to reschedule. In my moment of peace, I said no problem. When I got to the car and told Nick, he was not so peaceful. He promptly reminded me that all the arrangements and us taking the day off cost us several hundred dollars. This was a good point. He got back on the phone and within an hour, they had found another speech therapist that would be coming to see us. They apologized and we were on our way.

I worried about lots of things on the ride down to Indy, like where we would eat lunch, would my friend get the job, would we have time to buy cookies from Trader Joe’s? Nick is rather charming and instead of saying “You need to be in a home,” he said “You need some shalom.”

Peace—does that exist anymore? I had a hunch it did and hoped I would feel that someday.

I hate the waiting rooms where you have so much time to think about all the possible outcomes. Ella was nervous, as I mentioned to her that someone was going to be looking in her mouth. As cute as humanly possible, she yelled “Oh no!” and covered her mouth with both hands.

I was feeling a bit overwhelmed/nervous/tired/ and prayed that God would hold me in the palm of his hand during our appointment, that I wouldn’t feel alone anymore. I also resolved to cry if the information warranted it and to not be afraid to do so. I figured it was probably not the first time a parent snotted all over the room and probably wouldn’t be the last.

And to be honest, I don’t remember much about what was said by Nina, although she is very knowledgable and wonderfully nice. I was too busy trying not to keep the tears north of those dark circles that seem to be taking over my face these days. And so finally I said, with voice trembling and all, “Do you see any reason that she shouldn’t talk well/normal eventually?” And to my joy, she said no. I had to keep my eyes off Nick from this point on because eye contact would have caused a serious leak in all of our wells.

We walked to the car a little lighter than we had walked in. And before I knew it, we were searching for Candy Cane Joe-Joes at Trader Joes, following Ella as she confidently threw the things she loves in to her cart.

And I felt a little bit of Shalom. And it wasn’t all so lonely.

We both agreed that all we needed was the possibility that all could be well. That one day this mess of a situation would be in our past and something that is just a story to her. And she heard those words too. She knew what Nina was telling her about her future and I wonder if that didn’t take a way some limits for her that day, too.

In other not-so-coincidentally related news, Ella said some new words this week like “yee-haw” (pronounced mmm-maw) and back pack (wack-pack). She even said with utmost seriousness, “Oh no, I left Dora in my room!” which was heartbreaking enough to send Nick up 3 flights of stairs to get it. Never mind that “D-D-D-D-D-D-Rora” was lost somewhere in Ella’s womb, (room) I was so proud of her for trying. I hope that will continue on to her school. And I hope the kids are gracious to her.

We received a $10,000 computer in the mail this week. In its most computerized voice, it speaks the words my child cannot. Easter Seals was generous enough to loan it to us to see if she likes it, which saves us from a very expensive trial and error. And I’m afraid she does, as her joy level is increasing as buttons pushed yell things like “I don't like that” and “My name is Ella.”

Actually, she has been pushing the “Leave me alone” button quite frequently. We are also hearing a lot of “I’m mad and I’m going to my room.” Dang. She seems to finally be saying what she has been wanting to say.

It’s all so jacked up. It is not normal or comfortable or something that is easy to grasp for me. But, it brings a little shalom to a 2 year old girl who was in desperate need of some.

In turn, bringing some peace back to me.

May you feel much shalom this Christmas. May you not get too wrapped up in traveling and presents to remember that Jesus came to give us abundant peace and overflowing joy. He always comes when you call, grieves when your heart breaks and loves you even though you’ve got more issues than Sports Illustrated.

Have a wonderful Christmas. Thank you for reading this year, even when it was hard to write and in turn, hard to read. Love to you.

Further Thoughts on Plan B

2009-11-11T13:56:00.005-05:00

You should see Miss Ella, strutting all around with her extra-cute hair cut and new glasses. Her purple glasses had been abused and battered more times than not and were forced in to an early retirement. I'd stuck with the same frames for her for the last 4 pairs - in purple, of course. It was her signature. When she was a baby, people would stop us and say "I remember her from the glasses!" It was a serious step-up from "I remember her from the feeding tube!"

And now she is sassy as ever, with transition lenses and all. It's the perfect distraction to keep people from noticing her recent weight loss. She was getting so big, growing so fast and then in an instant, she is swimming, hiding behind the mass of fabric.

We decided several weeks ago to try and wean her off the feeding tube. Her 26lb self had made it to the 25% percentile. I was more than overjoyed. But, it was time.

Her feedings skills have drastically improved in the last few months. We are not sure if it was our prayers or her tongue or what, but this kid can eat. In her former eating life, we'd give her scrambled eggs because they are good for her and she likes them. But, after chewing them for a while, she'd leave us a pile of a quiche-like substance. She'd get a napkin and wipe out her mouth, take a drink of water and eat again. I try to give her space when she eats, let her eat wherever and whenever, not worrying about the mess till the end. But, it was hard not to cry and stress as she spit all her precious calories and nutrients on little piles on the floor. And so as her skills increased, we knew the Pediasure must decrease.

Week 1, she had the flu. Week 2, she made up for week 1. Week 3 she didn't seem quite so hungry. Week 4 was a weigh-in. I've been bracing myself for the weight loss she would experience this time around, but knew it was the cost of doing business. We've controlled all her gaining so far and now we are letting her take over.

Almost 2 pounds. Crap.

But this does not deter us from trying, as "this is to be expected." But on days like today, where she refused to eat, I found myself fighting with her about food. And when the anger wears off, I am sad and anxious. Ella just has to figure it out, eat like a normal 2 year old and her parents have to let her. (that's the hard part.)

First Day of School - August 2009

In other news, my kids both started preschool this fall and are in love. The weekends are no longer fun, as they don't include school. Owen has so many friends, has learned so much and can almost write his name: NOW.
Owen "Now" Liskey - Age 3, School pic 2009

Sometimes I feel like my name is NOW, too.

Ella has a little harder time with telling me about what she did at school today. I'm not sure who her friends are and if she can say her names. I do know that she is loved by her teachers and the kids in her class make her feel so special as she enters the room. It has been a good experience for her so far.
Ella Liskey - Age 2.5, School Pic 2009

But, her teachers have told me that recently she has become self-conscious and stopped attempting to talk at school. She doesn't want to say anything "wrong." That broke my heart. These kids are the exact same age as her, but are talking in complete sentences. It's hard for me not to notice when I'm around a talking toddler who is younger, but talks better. I try so hard not to compare or get mad, but it is damn hard. I was a bit surprised that she noticed, really.

And so I rushed her back to the dentist to see if she all-of-the-sudden had a frenulum that could be snipped to free her trapped tongue, but she didn't. And I've been asking around, calling, stressing about ways/contraptions/procedures to make her tongue grow, but there isn't any. And I even checked in to that medieval torture they do down at Riley Hospital to see if I would have done that when she was little if it would have made a difference and they don't know. Thankfully, her SLP slapped me around a bit with that one and reminded me that I'd never have forgiven myself if I'd let them sew her tongue to her lips for a couple years. She was right.

I just want to drink coffee and yell out the F word. Lots of times.

But, then, when I feel like I'm going to have a M-E-L-T-D-O-W-N, this strange peace falls over me like a blanket and I remember that I am not alone. God still hears and sees, even if I forget to pray. He still knows my heart and my worries, even if I don't say them aloud. I often have to remind myself of the miracles we have already seen, like the healing of Ella's eyes. For further proof, her eye doctor said last week, "I can't even believe these are the same eyes!"

Plan B.

If He can do something impossible like make her optic nerves grow, why can't he stretch her tongue just enough to grow in proportion to her body? Plan B is the new Plan A.

My heart gets lighter when I share my burdens with you. Even if you don't know me, thank you for reading. Thank you, if you do, for praying.

I think we need to be better at sharing each others burdens, helping each other through the muck.

Like MckMama's baby Stellan, who flat lined and almost didn't make it this week, you should see her prayer map of where people all around the world are praying. Carrying that burden with her.

And like Olive Hope, a sweet girl belonging to friends of one of my favorite friends, who was born premature in Thailand. There are many times when she shouldn't have made it, but has pulled through. Her parents, Rusty and Lynnette, are missionaries in Thailand. There are many people that have been helping to carry their financial burdens, as their health insurance has ended up being more of a bother than a help, capping at $25,000! Those of you with kids who were in the NICU know that only covers a few days! But, some good Samaritans have donated money and are paying for a commercial flight for them back to the states--with an entire team of medical personnel on board! That kind of love and generosity is unbelievable! But, they still have many financial needs. Check out their auction blog or join their Facebook group: Praying for Olive Hope.

Taking on a small piece of someones burden costs us nothing emotionally, but for the family you help with prayers, gifts, money, time, meals, etc, it is the world. I know from experience, of course. It's what love is about. It helps keep the world in one piece.

It may be one ugly, cracked, glued-all-over, mangy looking piece, but at least it's one piece

All shall be well and all manner of things shall be well. - Julian of Norwich

2009-10-22T15:58:00.004-04:00

I'm alone for the first time in a week. My kids contracted some variation of the flu - hippopotamus flu, I believe, and they have been too sick to go to school. Or anywhere, really - other than the 'FREE KIDS VIDEOS' section of Family Video. Today, Owen felt good enough and so we shipped him off to his favorite place.

Miss Ella has not recovered quite so quickly, as her ear, nose and throat regions are a little more connected than most people. Ear infections, allergies and getting a new bloody tooth cause the kid to get a sinus infection on the back end. Its always sick x 2 for her. Right now, she's napping on her IKEA princess bed, covered in all sorts of blankets, animals and snot. Maybe more snot than you've ever seen.

Owen turns 4 next Tuesday. He's been waiting all year- seriously. It was at 3+1 day he started saying "When is my birthday?" The kid is in love with presents. What can I say? He learned from the best.

The tentative plan is going birthday shopping in the morning, where he can pick out what he wants. As of this afternoon, it was a new skateboard, a flying remote control plane, clay and Spike the Dinosaur. Have you seen Spike at Target? He's like 3 feet tall and loud and he costs $150 bucks. Seriously? We'll head over to the Mandarin House for some Chinese, per Owen's request. Then, he wants to bring his class a box of Krispy Kreme donuts. Original glazed.

I was thinking back to his birthday last year when we did similar things: pick out lunch, pick out presents. We spent the night with our family at Grandma's house. She did her best to act and move as normal, although she'd spent the last week at the University of Chicago, getting poked and prodded. They tried several times to put stints in to her veins to block the blood clots from moving to places they shouldn't go. It worked, somewhat. She was so swollen with fluid before those days, looking like the Marshmallow Man.

When she finally lost all that water weight we saw how frail she had become. Some days I still have horrible visions of watching her die. In her last days, she looked yellow and her breathing was loud, as her lungs filled with fluid. Her organs were shutting down, one by one, and it was "just a matter of time." The kidneys no longer could filter, the heart beating slow, slow and slower. Those long pauses between what is left of life, making us wonder if it had been her last.

I'm feeling a little better about my lingering grief, as the monument was just put on her grave this last week. No matter how creepy I think cemetery's are, what was made is beautiful there. The dark marble was shipped from India and cut in to a bench enough for 2. The top is engraved with the last line of her dissertation. I know I would freak to see my name with a dash next to it, just waiting to put the date my journey ended. But, my Grandpa seems to take comfort in the fact that their bodies will be together always, as well as their souls someday.

I'd been avoiding the cemetery since the funeral, where I was able to "disassociate," laughing at all the off key singing. But, this past Sunday, Papa wanted to have some sort of "memorial service" and there was no getting out of it. On the 5 minute drive there, I was frantically looking for some old sunglasses to hide the tears that I knew were coming. I found some, although a little small and immature. I was sporting a pair of Cars sunglasses, with Lightening McQueen sitting on my temples. Owen saw my find and ordered I give them to him. I explained the situation and he showed no sympathy. Three minutes later, I could hardly breathe. Thankfully, the only witnesses were my parents and my children.

Owen, overcome with compassion for his mom, rolled his eyes and handed me the glasses. I quickly reminded Mr. Attitude who buys the presents around here.

I got all reflective that afternoon, trying hard to remember the details of the final years with her. The last time we went out together was some random weekday in mid-January. I called her and she didn't feel like doing much, understandably so as we were soon to find out the cancer had spread to her bones causing chronic pain. But, she agreed and the whole lot of us Liskeys picked her up and took her to Steak 'n Shake. She loved Steak n Shake because of the BLTs - always on whole wheat toast. After she found out she was as sick as she was, she started ordering Jr. milkshakes and french fries, too. Why not live it up?

On this particular day, she ordered a steakburger for the first time ever. It was the best burger she'd ever had and wished she'd ordered one sooner. She wondered if I'd take her to Meijer to get the socks she loved and a new purse. At first she wanted me to go in and do the shopping for her, but I convinced her to come in with us. We got those socks she wanted and I got a few things that we needed to. She started craving lemon donuts and sent me to fetch one for her and for us. Today more than ever, she walked slow and needed to push the cart to stay standing. I intentionally walked at a turtle's pace to keep her company, knowing we would both miss that too soon.

Purse shopping is never easy. Her default is black and Grandma wanted something new. We looked at what seemed like hundreds before she decided to settle for black, yet again. But, I saw a deep purple sporting a Nine West logo. I showed her and she decided it was time to break away from what was comfortable and get a damn purple purse. And so she did. And I made her promise she would leave it to me in her will.

She made it out again a few days later and called me when she got home to tell me that at church everyone loved her purple purse, as the color was rich like eggplant. Grandma wished she'd only discovered purple purses earlier.

I've often thought back on that day, where a woman who lived a full 70 years, who said she'd done everything she'd ever wanted to do, found 2 new things to love only 2 weeks before she died. And I wonder how many things I've been to scared to do, to try, to change only to find when it is too late that I could have lived richer, loved more experiences.

Which of course, makes me think of this most over-played video that I love. I can't get enough. It's like crack, or pure joy rushing through my veins and theirs. God, please help me remember these goofy-ass white people in the days ahead.

Vodka Babas

2009-08-31T13:19:00.007-04:00

There are some things that change when you have a kid. No matter how much you still "want to be you," you are no longer your own. Your body and life and controlled by people much smaller in size than yourself, but much bigger in power and will.

If not careful, the short people will control when and where you eat, if you will ever sleep alone with your spouse in your own bed, whether you get any work done, laundry done, take a shower, etc.

Not that the short people that live with me have any control over my life, but I'm just saying...

Nick and I have recently taken up bartending at home. I don't want you to believe that the CEO Midgets of Liskey Manor have caused us to drink excessively or anything, but they sure have taught me to DRINK FAST.

Anyway, we were inspired after we bought a cheap margarita mix at Meijer, only to be hung over the next day. This hangover was not alcohol induced, but rather a bad mix of artificial lime flavoring and high fructose corn syrup.

I was on a mission. I'm sure Nick would have been more excited if I was on a mission to do the 12 loads of dirty laundry we hve or to clean the fridge. There was no time for that: the perfect margarita was waiting to be made, from as close as scratch as possible.

I stayed on Google and close the the phone. Nick was at the store for what seemed like hours: a bag of baby limes, one large bottle of non-yellow tequila and triple sec. Triple Sec was $30 - what? I paniced. This was a crucial part of the recipe (we thought) but spending that much seemed irresponsible and would better be used in Owen's college fund. Nick trusted his instincts and went to the liquor store and got a small bottle for $3 instead.

There was so much prep work: cutting and squeezing limes, boiling sugar and water, crushing ice, making fresh salsa and gucacamole. It was all coming together so nicely, as it should since we were putting in more time and effort that we put in any meal we make these days. Now, just to add the tequila.

The directions said to pour 2 shots. We froze.

I had 2 shot glasses at one point in my life. It was 2001 and I was studying in Jerusalem and brought home a set of mugs and saucers made from unbreakable Jerusalem crystal. Shot glasses were only a few sheckels after all the money I'd spent there, so I bought 2. They fell off a shelf when we lived in L.A. and shattered on the floor. Unbreakables broken.

We searched in our crowded cabinets and found nothing. How many ounces are in a shot anyway? We asked Google and decided crisis averted; we'll just measure them out ourselves. But, we couldn't find anything with ounces written on it. My math is poor, I failed quantities and conversions in school. My heart was beating too fast to Google "conversion chart" and figure out which one I needed, anyway.

Just then I realized my whole world has been controlled by ounces and calories for over 2 years - how do I normally measure my ounces? After a moment of relieved joy that I had actually forgotten about all of Ella's feeding problems and syringes for 5 minutes, I knew what to do.

I pulled the water-spotted Medela breast milk bottle from the drawer, filled the line up to 2 ounces and showed Nick: Tequila Baba.

We laughed at how different our life was with kids and how we would have totally made fun of ANYONE WHO USED BABAS TO MEASURE ALCOHOL AND ANYONE WHO SAID BABA INSTEAD OF BOTTLE WITHOUT THEIR KIDS IN THE ROOM in our former kidless lives. Its crazy, but our kid-full lives are so much more exciting that the former: full of dancing, full of laughter, full of lots more shit.

One day they will be gone and there won't be a baba to use for a shot glass. We won't trip on toys in the middle of the night and our house will be quieter and full of other good things, like lots of wine and expensive lamps that won't be knocked down with baseballs and a TV sans frosting hand prints. Our time will be our own and our bed will be our own too. Even so, seems like no matter how full of nice, expensive and pretty things my life becomes, it will always be fuller because of the no-longer-so-short people who used to scribble on my walls and snot on my sweaters.

But until that day comes, please learn to wipe your own butt and sleep in your own bed, sweetie pie.

He gives and takes away

2009-08-13T11:31:00.012-04:00

I can't help but feel overwhelmed with trying to write today. Nothing earth-shattering has happened since we last saw each other here, but with any absence is a passing of time. I can't tell you where the month of July went because I feel like I may have skipped it all together. It blended all together with only the echoing of fireworks in my ear and a flip-flop tan to recall it was ever here.

It's hard to understand a situation when you are in it, which is why its always easy to watch the people in your life from the sidelines and judge and dispense advice. But, as I learned from a friend in college, sometimes you must step back and get in position to watch your life as an outsider, as that person on the sidelines who knows what to do. And so, I step back.

For some reason, the last month or so has weaved together the last years all together and the magnitude of all that has happened in my family and life has hit hard. It is a heavy load.

Ella has finally hit 24 pounds, which for those of you who know my heart and those of you who pray for your own little ones to grow, know that is a miracle. She was stuck at 18 pounds for an entire year (give or take a pound or 2 up or down every week). She is on the charts. It's on the lower end of the charts, but by golly, she's on the charts.

And even with joyous leaps like that, I still can't shake the feeling that this journey and task are too much for me. That she may never talk or sing. That she may never be able to eat without the help of a tube. That she may never stand up straight. That my heart might give out before I get to the end. That my broken heart will break hers. That my faithful Healer will not hear my snotty prayers.

And yet still, there is this tragic void from my Grandma's passing. This picture was taken the week before she died, before we knew how close to the end it was. I was afraid I didn't have a good picture of Ella and Owen and their beloved Grandma Sharon. She hated pictures, almost as much as me, but I'm forever thankful for her smile here. I'm sure she knew that this is a picture they would hold close forever and that their love was one of the most powerful things in her life and so, she smiled.

I've been remembering things like how she patiently taught me to sew and how she shared all her favorite musicals with me over bowls of popcorn and cans of Diet-Rite. I remember the glorious trip she took me on to Salt Lake City when I was 7 to visit my cousins. I flew on a plane with my Grandma, just us, and spent a week with her and my Papa. She spoiled me. We ate out every day and she bought me lots of souvenirs, including bells to hang on my Keds so the bears didn't eat me. If that isn't love, I don't know what is.

She was the kind of Grandma that made each of us feel like we were her favorite - like we could do no wrong, when several of us did our fair share, myself included. We fought over who could spend the night at her house and ran and hid when our parents said it was time to go. She always made Christmas cookies with us and took us school clothes shopping. She paid us for our good grades and insisted we have at least 2 celebrations for our birthday - 1 cooked by her and the other at a favorite restaurant. She bought my books all through college with savings bonds she'd purchased through the years. She worked a job in her 50's and 60's just to have enough extra cash to visit her East & West Coast grandkids whenever she felt like it.

But, it wasn't just us who felt her love. She faithfully delivered food to the worst neighborhoods in South Bend for St. Vincent DePaul for many years. Her knees were always bad and she wasn't all that strong, but she did it anyway. Sometimes I'd go with her and help her pack up the bags and make sure there was stuff kids liked in there, like mac & cheese and cake mix. We'd walk up to the door with gallons of milk and non-perishables, and with humility and grace my Grandma would deliver what often felt like a miracle. I thought people would be defensive and embarrassed for needing the help, but their responses played off hers: thankful, loving, humble.

Grandma always made sure that everyone we knew had family to be with on Christmas and Thanksgiving and if they didn't, they were our family. She opened her house to whoever needed it. She marched for peace. She gave money freely. She once even hid a man in her basement who was trying to avoid the Vietnam War.

She fought for peace and justice her whole life. That's how she showed God's love to the world. It worked.

It still works.

I'm sure she knew the good she was doing. But, it wasn't until her second to last day with an earthly body that we saw it come together.

The obituary became a group project, as we all saw unforgettable qualities that must be mentioned. We thought it only be true to her to mention her years of food deliveries in a rusted-out blue station wagon. We laughed about the trunk popping open as she drove over speed bumps.

All the while, one of the kindest nurses we had, was giving my sleeping Grandma more pain meds, more anti-anxiety, through her IV. She inquired about our mumblings and the woman she was caring for. It was the strangest thing that happened next.

The nurse told us of her being a new mom with no money at all, as her husband was on active military duty. A friend suggested she get help with food and other basic necessities till her husband was home or she found work again. And because God is cool like that, the cancer-fighting old woman whom she was caring for that cold January day, had once cared for her. She hadn't put it together at first, but once she did, her kindness was multiplied and her gentleness overflowing.

See, I don't know if you believe in miracles or not, but that was a miracle.

Sharing that with you made my burden lighter. Seriously. On the long tape measure of my life, this is probably only an inch or even and inch and a half. It only feels like the weight of the world when I don't pull the tape out all the way. Here's for hoping I don't snap my fingers as it flies back in!

We all know, with death comes new life. And in this dreary month of July, there was a bright spot. My first nephew was born. He is cute. He is wise. He is so loved. He came when our hearts needed him most.

Adrian Dash Mabry - we love you.

Magic Bullet or The Magic Bullet

2009-06-30T08:10:00.001-04:00

I was telling a friend the other day about the Magic Bullet I had bought for Ella. I told her that we were all enjoying it very much and especially me, because it was helping Ella so much. I couldn't help but notice a very strange vibe from my friend. She didn't know that I was that kind of girl.

Wait ---what??

And then I remembered: While perusing the internet for deals and discounts on the Magic Bullet, I came across a whole other world of Magic Bullets for sale. Yes, it's true. The Magic Bullet 2.0 is also the name of an extra special vibrator. And yes, it is waterproof, has 7 functions and can fit in the palm of your hand.

My friend, whose name will be omitted to protect her reputation, told me she had first seen the Magic Bullet at a sex toy party that she was "dragged to." Riiiight.

After a series of misguided looks and a few laughs, we got it all straightened out. However, I did want to make sure that you knew that I was surfing the internet only to compare food processors, not vibrators. And can I tell you that I love it? I love this dang Magic Bullet so much that I want to take it to bed with me and kiss it and use it all day long. Get your mind out of the gutter people - I am talking about the AS SEEN ON TV-make-a-smoothie-in-10-seconds Magic Bullet.

For days, Nick and I have enjoyed fresh salsa and smoothies multiple times a day. It may be the best gadget I've ever bought. I love it.

In case you were wondering, yes, there are other Magic Bullets.
Magic Bullet Records
Army Magic Bullet Counseling - WTH?
Magic Bullet Suppositories (although back ordered till August 2009. Dammit!)
The Magic Bullet Fund to fight Canine Cancer
And, a wide array of Magic Bullet Vibrators - not just the Mini 2.0
Confessions of a recovering magic bullet chaser (not as bad as it sounds)

And now I will go. The suggested pictures on the right side of my screen are chosen based on key words I use in this post. Right now, a horrible cartoon is staring me in the face. I must go. I don't think that is legal!

Drop, Drop, Drop it like its hot

2009-06-29T13:18:00.005-04:00

Kidless in California - August 2004

I never really liked kids. It's true. I was one of those people who thought I could get through life and just love on other peoples kids. Buy them expensive presents for their birthdays, take them to get ice cream and tell them it's our secret. You know, the normal stuff.

I'm not very patient. Shocking, I know. But, I learned early on, as I babysit my siblings, that I did not have the patience to raise a child. Hell, I couldn't even babysit my own little sister without playing the "Let's see who can stay the stillest and quietest the longest" game. It is otherwise known as "Sneaking a nap."

I always won.

So, when I signed up to serve in our church preschool in L.A., I didn't know what to do, how to survive. I quickly found myself completely addicted to Goldfish Crackers and decided I had stumbled upon the most perfect people ever--3, 4 and 5 year olds. They were funny, thoughtful, energetic, curious and potty trained. I had to have one.

I also wanted to buy the big Goldfish Cracker jug from Sam's Club without as much judgment.

I loved how the kids asked about the baby growing in my belly and wanted to feel it move. They suggested names and gave me extra hugs. They told me about their own brothers and sisters who once grew in their mommy's bellies. The girls wanted to be princesses who grew up to be mommies and be married. The boys, well, they were going to save those princesses most days. The others, they would just tease them and let a dragon eat them. It was more comical than I ever dreamed of. They were perfect. So I had one.Let me brag on Owen for a minute. The kid basically starved the first week of his life because of my own breast milk issues, and he still loved me just the same. He slept through the night from a month on, took naps, ate perfectly and normally. He always loved me the most of all . He is the reason I had more babies.

Ok. Truth time. The reason I had more babies is because of my own negligence in preventing more babies. Hence, the 16 month age difference. Hence, craziness.

He may have been a terrible 2, but I honestly don't remember. I was so stressed out and tired with Ella that he could have ran away and I may not have known for 7-10 minutes. Well, anyway, I'll just choose to remember him as wonderful then too.

And then she came, 7 lbs 7 oz of sheer will and sass. One of my proudest moments was her kicking a NICU nurse square in the jaw, after another failed attempt at an IV in the foot. That's my girl.But, my girl has turned in to a monster. Tantrums, throwing food, slapping, shouting NO, sneaking sticks of butter out of the fridge, demanding popsicles for breakfast. She is 24 pounds of ass-kicking, hip shaking determination. Determined to do what, you may ask? Drive me crazy.

Yesterday was a jam packed afternoon of therapists - 3 to be exact. They were working on ways to get the most amount of calories in her in the most enjoyable and quickest way possible. We are going for the consistency of yogurt, ice cream, applesauce, creamed soup. And as they worked hard together, I couldn't help get the reoccurring gloom of having a kids with issues. We are now blending meat. I have a problem with that. I think it's weird. I don't want to do it.

But, I put on my big girl pants anyway and went out and bought a Magic Bullet Express (as per the recommendation of Kristin Gingrich--a smoothie pro!), determined to make the best chicken milkshake in town. We then went to Target to pick up enough food to feed a small village and a couple hundred dollars later, were looking through the fridge for something to eat. (Can I get a shout out on that? Do you feel me?)

Ella ended up eating a small bowl of Nutella. In my previous life I would have reported myself to CPS, but not today. Today, I celebrated 100 calories and 50 smiles from the world's most famous chocolate hazelnut spread.
Many moons ago, I wrote a post about how I wouldn't change anything about the Ella situation if I had the chance. If God said, "All this could be gone, but you still got to keep her..." I said that I wouldn't change a thing. I lied.

Now, I'm not trying to get all "April Rose" on you or anything, this is not that kind of lie. I remember when I wrote that post almost 2 years ago, I fought with myself, back and forth, over would I change it or not. I felt to guilty and ungrateful to say I'd take a do-over.

I guess I wasn't worn out enough then, because if G-O-D came to me today, I'd say HELL YES, YOU CAN TAKE IT ALL AWAY. And yes, I'd yell it. Understand me here: I love her a lot, and I want to keep her, but I'd give away the pain in a heartbeat.

But, maybe that is what we do anyway when we pray for healing. It's asking for a do-over, but without the time machine, which is better anyway. If we went back in time, I'd have to watch my Grandma die again and have 2 babies in diapers. No thanks.
Did I tell you we met yet another person, sent from God, with a message about healing Ella? This one from a little farther away, in South Africa. His name is Blessings. Honest. I couldn't even make that up.

And just FYI, I don't seek these people out. I just pray for guidance, for signs and messages and they come.

He wanted to pray for us, and mainly it was for our business. But as we told him about our family, he wanted to pray over our children. He gave us some renewed vision for our business, a passage in scripture which to build it upon. It was one of those moments where it all came together and Nick and I were making those "Can you believe this is happening???" looks. The things we had been talking about/ praying about in private, our new friend confirmed. And then he prayed for the kids. For Owen, to bring strength to the world and to become the strong man he was made to be. For Ella, for healing. And to then go share her story of healing.

He said that for our business to succeed, for our family and marriage to be strong, for Ella to heal, it was going to cost us FULL PRICE. Full price is something that Nick and I talked about in great detail, but we didn't know it was scriptural. King David was going to be given something for free and he refused, saying that he wanted to pay full price, for he didn't want to "take something that cost him nothing." He wanted it to be a sacrifice. Everything good has a cost. Everything.

And for Ella, full price means stepping up my game and giving it my all. God will heal her, but He wants me to do my part. It sucks because I want everything now and easy and for free. Full price. Thus, the Magic Bullet. And lots of organic butter and standing in front of the mirror sticking out our tongues for hours and being patient as she throws her food at my face and those dreaded flash cards. If I want her healing, I have to pay full price.

Blessings said that we would see something small happen right away and then the bigger stuff would come later.

In my former kidless-much-thinner-more-flexible life, I used to love to dance. Ella also does, except she doesn't have the flexibility for it. Her PT, Miriam, says that her spine moves in one piece, instead of lots of little pieces that can move together. Well, as she was dancing the other day and I was painfully watching her little white girl body try to dance, I thought it was the perfect moment to partake some of my knowledge. It was time.

As we danced to Boom Boom Pow, I taught one of the most important things I could ever teach my child: How to drop it like it's hot. After a few minutes, she was practically "Doin' the butt." It was a proud moment. And then yesterday, she did a move where her whole spine slithered like a snake - not in 1 piece, but in many individual pieces all working together to perform one killer dance move.

And I thought to myself that maybe God has more of a sense of humor than I thought. Maybe this was the little thing he wanted to give us to let us know not to give up just yet.

On the road again

2009-06-09T12:57:00.006-04:00

I can go from good, calm and happy to extremely worried and anxious in a moment. The kids are eating watermelon, dripping the juice all over my life and wiping their hands on the black couch. Some days I would yell and have a 28-year old temper tantrum over such a thing, but not today. Doesn't really matter.

There are words in my life that immediately cause me stress. It's what Dr. Tim Nelson would call my "walking wounded dictionary," I would suspect. Some of the words in my dictionary include: anomaly, developmental delay, aspiration, airway obstruction, blue spell, swallow study, sleep apnea, etc. Some of these words cause such a rise in me that I feel I am visibly twitching, that you could almost see what is happening in my mind with the slightest thought.

Today, I officially and cautiously add another word to that dictionary.

Intelligibility.

In speech it has to do with the ability to have what you say understood, to be clear enough for people to understand. There are a lot of knowns with Ella: her intelligence (which is normal to high), her learning patterns, her motivation for learning. But, intelligibility is where the knowns have an end. Will anyone be able to understand her words? Will her tongue catch up and grow or will she "hopefully" learn to compensate and get most words out anyway?

This is another part of the Pierre Robin Sequence/Syndrome diagnosis. However, Ella's tongue seems to be even smaller than normal. Then again, she's smaller than normal, too.

I tell you, some days there is no end to this stuff.

Ella's speech therapist, Carol, brought it up. Kindly, cautiously, quickly, yes, but it never matters how it's said. It always feels the same. The last time that word was spoken in this house caused me to go in to an internal panic for about 2 months. I never told Nick, as I thought it would break his heart. Somehow he knew, anyway. He grieved it secretly, on his own.

I am trying to stop my mind from going down the road of her sounding like a deaf person, or signing her entire adult life. I know there is nothing wrong with that. I know it. I'm not trying to sound selfish and like my kid should be excluded from that part of life, but it is possible she can avoid it. I think I'm at "maximum capacity" as is.

A couple months ago Nick was on an appointment, a rather strange one actually, that ended in a most unusual way. Somewhere between explaining what we do and why we do it, this potential client got a message. She fought telling him the words that were rolling around in her heart, her mind, but knew that a message from God is not something to keep just for you. (Just ask Jonah, although he didn't figure that one out till he was some whale's dinner. )

She spoke to Nick about things that she couldn't have known, like his fears and inadequacies. She told him about the great plans for our life and how all we have gone through, all that we do, will be for reasons that we never imagined--something we see happening already. And for the skeptic, you could write it all off as coincidence and lucky guesses. Until she mentioned Ella.

One of our biggest unspoken fears is that her tongue won't grow, but like I said, it's unspoken. She asked Nick why we didn't pray for her tongue to grow. He had no answer; he was in shock. She said that we need to pray that her "tongue be loosed." She could never have known.

I couldn't help my mind from wandering to images I had painted in my mind from the T.D. Jakes book, Woman, thou art loosed. Often times the power to be set free is in our hands, and yet, we still stay tied up, chained to our pain. And then I thought about my own prayers, and how they have dwindled off in the last years. After our big miracle with Ella's eye, I prayed less and less for healing. I guess nothing felt as urgent as blindness. And so I got lazy.

None of our therapists tricks to get her tongue to move/grow/etc. have worked. I even took her to a pediatric dentist who helps kids that are "tongue tied." I brought that poor doctor all my hopes and dreams about her speech and feeding, putting all my eggs in his basket. But, when he gave us the "good news" that her tongue was not in fact, tied down, instead of relief, I cried. I cried at the reception desk, and the whole way to the car. I took my kids to Taco Bell and let them get a drink full of High Fructose Corn Syrup. Then, we had big expensive sugar cookies from a fancy bakery. But, junk food doesn't heal all wounds.

After our good bad news from the dentist, I realized Nick's new friend was right: I have to pray for her tongue. I'm a slow learner, obviously.

It is scary to not be able to control this, to know that I have to give it up. And in the same breath, why would I want to carry this burden anyway? Stacey, Ella's OT, told me that I need to teach Ella to pray. She can say "amen" already - something she learned at dinner with my grandparents - but now we just need to intentionally teach her to say, "God, please make my tongue grow." With His power and hers, it will be enough. It has to.

Every time we are confronted with something like this, it takes me a while to mentally sort through it and prepare. I feel like we are going on a huge camping trip and I need to pack a whole lot of stuff to get ready. It's not our first time camping, but this is a new park we have not yet explored and we sold all of our supplies last summer in a yard sale. So, we are starting over. Not to mention , I absolutely hate camping.

In real life and in my analogy.

And so once again I find myself, sitting at the heals of The Great Physician, asking for what the world says is improbable. I have faith she will be healed. I know someday that her tongue will be loosed and she will talk to her friends on the phone for hours. She'll probably have a $500 cell phone bill her first month having a phone. We will probably ground her and make her work to pay it off, doing filing in our office and volunteering her to spend her weekends for the next 3 months at the homeless shelter, so she sees how fortunate she is. Then, we'll tell her about how it is a privilege to have a cell phone, not a right and that we will have to seriously consider if we will give it back to her or not. She will yell at us in her loudest, most intelligible teenage voice, about how it's not fair.

All the while, laughing to ourselves, knowing how fortunate we are for her words and screams, more than any other parent before.

**If you would be so kind, I ask that you pray for this. We are praying specifically that her tongue will be loosed; that it will grow. That this will be all that she needs to help her be able to eat normally and safely and talk clearly. Thanks. :)**

Owen the baby

2009-06-08T07:59:00.003-04:00

Owen loves books. He's been carrying around piles of them for me to read ever since his arms were strong enough. He's gotten quite attached to some of the books that I once loved, like Where the Wild Things Are and Noisy Nora. And then there are the less desirable books, books about nothing good, nothing funny, nothing at all. Sometimes I think that any old joker can get a book deal. I sneak that kind of book in to the Goodwill bag any chance I get.

A few weeks ago, our nightly ritual of book reading changed. He asked instead if I could tell him a story with my mouth about baby Owen. It makes me laugh when he says that: A story with your mouth. As opposed to a story with a book. How funny is he.

In the following days, I began to get very upset when I couldn't remember many different stories. I was feeling the effects of "Mommy Brain" at full force. Some days I would offer to tell him a story about me that was funny - but he didn't want to hear about me unless is was a very naughty story - a story about me getting in big trouble for doing something very dumb. I guess he wanted to know that I also was a trouble-making first child. I was.

But I did remember one "classic" story. It's so disgusting that you shouldn't read it while eating - seriously. Owen loves it. It's hilarious and naughty. I've been doing my best to tell it over and over again, not remembering the details.

In a twist of fate this morning, I remembered of the good old site, Xanga. I completely forgot that I used to write on there and for a time, I paid to do so (double dumb). Not sure if it still existed, I wearily typed in www.xanga.com/nickangie today and it was still there.

I found a perfect and true account of this famous story. I want to share it with you today. And I'm serious - stop eating.

June 2, 2006

Nick and I are sleeping head-to-toe this evening. No, it's not because we are mad at each other or anything dramatic - but there is a small person that had his head against Nick's chest and one foot jabbing me in the heart and the other foot kicking me in the stomach. I decided that if I didn't move, I'd be dead my morning. So, here I am, at 2:31 am - wide awake from abuse caused by an infant.

But would you like to know the most hilarious/disgusting thing ever?

I went to check on Owen today, who had been happily playing in his crib. As I approached the room, I started to smell a most rancid smell. Hearing my footsteps, Owen looked up and smiled. Just then, I saw it: poop. He has recently learned how to unvelcro his diaper covers and being the mischievous little 7 month old that he is, he senses freedom, bolts and just leaves a pile of diaper.

Well today was such a day....except that after he pulled off his diaper and crawled away, he pooped. Then, as he normally does, he rolled all around his crib and deposited poop on every possible item. Horrified, I screamed to Nick that we had a true emergency. He ran in and we both started laughing.

Owen was so amused that we were amused, so in the tradition of encores, he rolled over for us and...........you will never guess.....a binky was lodged in his poop filled butt crack. Yes, Owen had a butt plug. This was not just any binky, this was a binky on a cord that attaches to his clothes so he doesn't lose it. Owen spotted the cord and slowly started moving the binky towards his mouth. Nick and I both screamed. I'm not sure what happened after that, but I remember Nick running to the washing machine and I was crying in the bath tub with poop going down the drain.

My Mom brought up this one incident when I was a baby when my diaper fell off and I allegedly smeared poop all over everything in my crib - including myself. That was back in the days when people used diaper pins with cloth diapers. Anyway, my Mom said "like mother, like son." Let me tell you, that comment did not make me happy. I must stick up for my son and say OWEN DID NOT AND HAS NOT EVER EATEN ANY POOP OR SMEARED ANY ON ANYTHING. TODAY WAS AN INCIDENT OF ROLLING AROUND IN POOP THAT HE PROBABLY DID NOT EVEN KNOW WAS THERE. HE DID NOT HAVE ANY POOP ABOVE HIS WAIST AND NO, HE DID NOT GET THE BINKY IN HIS MOUTH.

Ok. That's it. Goodnight.

Ok. That's it. Good morning. Love to you today.

How Can I Keep From Singing?

2009-06-01T09:36:00.005-04:00

I got pretty well-acquainted with a police officer the other day. Well, as well-acquainted one can get with someone who doesn't really talk or smile. As we walked through Papa's house attempting to find places where something may have been at one time, or really, before Friday. I guess I'm lucky I wasn't there, since I'd been kind of house sitting and picking up mail for him since he was gone. I didn't make it to my favorite house on Thursday and then Friday came and went so quickly.

They say it happened between 12-3pm on Friday afternoon. In broad daylight. The neighbor works from home on Fridays and was home all day, except for then. He felt like he was being watched, like they were just waiting for him to leave to carefully break in to the window that faces their house. When they found the skylight, in nice neat pieces, all over the lawn, they panicked. His wife got hysterical. All the lights were on, mail still in the box, Papa's car was home AND he never leaves town without telling her. (It's that kind of neighborhood.) She was sure he was dead inside. I'm so glad he wasn't home.

I know that house like the back of my hand. I know where every picture frame and trinket goes. They left the house immaculate, or as clean as my small children had left it earlier this week. Wh0ops. I couldn't find anything missing at all, except the flat screen TV. My Mom noticed the Roman coins were missing. My Grandma's jewelry was tucked away in a drawer, thankfully. Most of their nice things wouldn't get any money; they'd have no value to someone else.

I did notice a couple file folders out of place in my Grandma's study, the room I have been slowly cleaning out, boxing up. "Bank Statements" and "Pay Stubs," read the labels. No one thought it was anything at all. But, I did go through and find account numbers and social security numbers in that stuff. It wasn't until the next day when everyone else started to pay attention to the details. My dad came by to check on his make-shift window and heard the phone ring. It was a guy he went to high school with who now lives at the homeless shelter. He'd been walking in a rather sketchy neighborhood and found my Grandma's wallet in front of an abandoned building. He wasn't holding it hostage or anything, he said, but he'd appreciate $10 to put some minutes on his phone card. My dad graciously obliged. Everything was still in there, like she'd always had it - except her MasterCard. It hadn't been used yet.

I've seen her wallet 50 times since she died, sitting on the counter. Once I looked through it to see if there was any money or gift cards that Papa could use, but there wasn't. Just her license, AARP card, credit cards, etc. I think that Papa had a hard time throwing it away, shredding up her things. That's why it sat. In plain view.

I can't help but think this is partially my fault. I mean, the mail was literally hanging out of the mailbox. People were trying to reach us Friday night, but my entire family was celebrating the wedding of my cousin, Brianna. I ignored the unknown numbers on my phone. Not like I could have stopped anything that was already in process or planned. They would have done it with or without my blessing.

I feel like all the yoga I've done all these weeks was gone the minute I walked in to the empty house. Stress overtook my body instantly and it's still taking residence in me.

I'm trying to figure out what I'm so incredibly bothered, why this messes with my mind and my soul so much. Being robbed is such a violation of life. To plan to take something from someone and go to all the trouble to do it perfectly just really bugs me.

And things were just starting to resemble some sort of normal for us. You know, as normal as can be with the glue in our family gone. I'm glad she wasn't home by herself. My Mom is glad this didn't happen while she was still alive because she too, would have felt very violated.

I'm 28 years old now, but some days, I still need my Grandma. I think back to those days in the hospital where I was praying she would die. Not because I didn't love her so much, but because she was already gone. Her heart was beating, but there wasn't much else left. We wanted her body to go, because the rest of her was already gone. And then when she did, I was surprised at how terrible it felt. How it felt as if she hadn't been sick for all that time. It felt like I hadn't had any time to prepare.

Cancer is so violating. It's like a thief has been planning to break in to your house, to steal all that is important, to leave you devastated in the end.

Papa had a somewhat easy time still enjoying his vacation. He went fly fishing in the mountains, had the best gathering with his cousins that he'd ever had and played some mean Bunko. He understands a little thing called perspective. My BFF, Brooke, she is learning it right now. And my sweet Ella, she gets it too. Just like the day before Grandma died, when Nick totaled their car, Papa didn't blink an eye. I guess I expected yelling because that is what I would do, but instead he pulled Nick close and told him how thankful he was that he was OK. Papa didn't care about the car, after all, it is just a piece of metal, he said.

Just like Grandma, as she chose the songs for her funeral, they were not songs of hate and anger towards God for not healing her, not giving her more time. They represented her life perfectly, till the end. And as I heard my old friend, Becky, sing them as only an Angel could, I pictured Grandma in heaven, singing them with the beautiful voice she never had (she would agree!).

I think the way you plan for your passing says a lot about a person. The songs you choose, what you take care of. Just ask Elisa, as she opened this at her baby shower. It was a complete surprise to their entire family, since her Grandma did not drive or leave the house much due to chronic illness. But, it was engraved to baby Adrian, who should be here sometime next month, from his Great Grandma who now lives in Heaven. She missed his birth by just 2 months, but she wanted to plan for his life. It was a beautiful thing to watch, as Elisa opened that gift and saw how big her Grandma's love really was.

One of the songs that my Grandma chose for her funeral is an old hymn called "How can I keep from singing?" I'd never heard it before, but it's beauty brought me to tears. I'm sure there are angrier songs she could have chosen, songs that no one could have blamed her for. But, she didn't. Peace is an unexplainable thing. It heals lots of wounds. It's worth looking in to, if you ask me.

How Can I Keep From Singing? by Robert Lowry - 1860

My life flows on in endless song;
Above earth’s lamentation
I hear the sweet though far off hymn
That hails a new creation:
Through all the tumult and the strife
I hear the music ringing;
It finds an echo in my soul—
How can I keep from singing?

What though my joys and comforts die?
The Lord my Savior liveth;
What though the darkness gather round!
Songs in the night He giveth:
No storm can shake my inmost calm
While to that refuge clinging;
Since Christ is Lord of Heav’n and earth,
How can I keep from singing?

I lift mine eyes; the cloud grows thin;
I see the blue above it;
And day by day this pathway smoothes
Since first I learned to love it:
The peace of Christ makes fresh my heart,
A fountain ever springing:
All things are mine since I am His—
How can I keep from singing?

Mom Guilt

2009-05-28T22:51:00.005-04:00

We've all felt it. We all know what it is. We all hate the moments when we feel it and hate the things we do to bring it on.

Some Mom Guilt is legit. If you beat your kids, you should feel bad about it. If you don't feed them, you should feel bad about it. If you don't change their diapers, you will end up in jail.

But, more often than not, it's the things we are not doing that cause us pain. It's like we think every second needs to be perfectly used and allocated to education and activities to sharpen the mind and give our kids the competitive edge they need to kick ass in preschool.

Don't act like you don't know what I'm talking about.

There are some days I let my kids watch more than one show or movie. Plural. Sometimes more than that. Sometimes I don't give them organic milk and I cringe as they slurp it down. Sometimes I give them suckers to shut up for the 3 minutes it take to lick that thing down. Some days we don't practice our ABC's, sing nursery rhymes or do flash cards.

I read on the cover of a book at Barnes & Noble last week, "Einstein didn't do flashcards." That was good news around here.

In my mind, my over-critical-of-myself mind, I find that there is so much that I feel I need to do, need to be, need to give. And when I tally up the score, I lose everyday.

Don't worry, I don't have any big weapons out right now.

Like I said before, many days are just straight survival. I don't worry about Ella as much as I used to and I no longer have to hold her in tears for a majority of the day. We've come a long way, in many areas. But even on our non-eventful days where no one throws up and Ella's head doesn't tilt at all, I still worry about her shoulder blades sticking out too far and feeding tubes being pulled out and calories and calories and calories. Did you know that we worry about calories? Not mine, but hers. Every calorie counts. Guess what happens when she throws up an entire feeding? It takes a 1/2 hour off my life.

And so I don't do flash cards. I'm not always fair when it comes to the length of time out and sometimes I yell. But, I still try to love these guys the best I can and sing them silly songs and tickle them till it hurts and let them jump on the bed. And the shows they do watch all have a good message like "the thrill of stealing wears off the moment you get arrested" and "sharing is nice and it doesn't matter if you hate it."

But, other days the guilt is less laughable. In the darkest moments, it can become unbearable.

I remember a particular night in the NICU where Nick was with Ella and I was "taking a break" in the waiting room, looking up information on Pierre Robin Sequence. This was a pivotal day in my life, as I learned that too much information = not good. I was only intending to get some direction and really understand what I was dealing with here. Instead, I found out that only 30% of kids with PRS will get out of it without having multiple chromosome abnormalities, syndromes, anomalies, blah, blah, blah. I should never have clicked on the "How did this happen to your child?" link. I guess I was hoping it would say "It's not your fault, this is a freak occurrence." Instead, it listed hundreds of theories on why it happened. Many of them, putting the blame on the mother.

I felt so sick that I could have thrown up. Too think, all this trauma that my baby was going through I could have caused. I ran to Nick and fell on the floor in hysterical sobs. I had never been that emotional in my life. I kept asking for someone to help me. I wanted to see a psychiatrist. I wanted to be sedated or hugged or talked to, but it was the night shift, I guess. Apparently, the hospital only plans on you going nuts during normal business hours.

Eventually, after many months and many prayers, I began to believe that this was not my fault. That there was nothing I could have known to do or not do which would have changed this. There is peace in not knowing. When the "specialists" were insisting that we go through genetic testing to "get to the bottom of this," I declined. They accused me of being simple-minded and oblivious. I call it peace. I call it self preservation. I call it "learning to deal with my life and make it through the day in only a handful of pieces."

And so tonight, as I watched my best friend in 4th grade share with anger and regret her birth story, my heart broke. Her traumatic rush to the O.R. and the physical pain she felt, left more scars than the one along her bikini line. Our yoga instructor gave some advice that I will keep with me: Have gratitude for that experience and what you learned through it and who you became through it and then tell it you never wanted it in the first place and release it. Tell it to get the hell out of here.

I asked my dear friend, Merriam Webster, to tell me what she thought about guilt. Here is what she said:
Guilt:
1: the fact of having committed a breach of conduct especially violating law and involving a penalty
a: the state of one who has committed an offense especially consciously
b: feelings of culpability especially for imagined offenses or from a sense of inadequacy

I love definition b. I mean, I hate it, but I love it that Merriam doesn't dance around the cold hard fact: guilt is often from imaginary offenses. We have made some of it up in our heads. We've blown it out of proportion. It's not all our fault.

I wish I had a story to tell to end this that would bring you all to tears and leave you inspired. I love when I watch a movie and all the loose ends get tied up in the last few minutes. Dang. Nothing. Drawing a blank.

I will tell you this: if Ella did not have this strange thing, I would have never known what a cleft palate was and would not have cared. I would never have learned of the kids in other countries who literally die and are cast off from their families because of their facial deformities. I would never have suggested that "all donations in lieu of flowers" be used to repair cleft lips and palates. We would never have received a letter from Ella's surgeons organization saying "Thank you, Sharon Sloan!" I would never have known about Pinki and I would never have known it only took $250 to save her life. Maybe you would have never known, either.

A Birthology

2009-05-22T14:26:00.001-04:00

Because she can't do what anyone else is doing, my best friend refused to post birthday wishes on my Facebook wall. She knew that everyone and their mom would do that and thus, the birthology was born.

It's probably the coolest thing I've ever read - I had a huge smile the whole time! Please read it and please comment to Brooke about how cool she is. You would love her!

FRIENDS ON PURPOSE

April showers bring May flowers

2009-05-21T10:58:00.010-04:00

It was 2 years ago this week that we prayed for God to heal our sweet baby's eyes. Weeks before I was told she was blind in her right eye, God had whispered into my ear, "I will heal her eyes." I've heard God several times in my life, in that kind of communication that is somewhere between audible and internal. People who don't believe think you're schizophrenic, but those who do, can tell the difference.

And so we gathered all together on my 26th birthday, with no one knowing what day it was, to pray and lay hands on our sweet girl. She put on quite the dramatic show with knocking the feeding tube out of my hands, spraying milk all over the room. Everything about Ella had stressed me out to that point. No one knew what we were going through and how bad it hurt. Until they came and sat on our milk-stained couch.

We prayed. We prayed and prayed. We talked and cried. I was so thankful for all the love that was gathered in our too-small living room to pray for a baby that most of them had never held, had never touched, had not yet known. We prayed until there was nothing else to pray. And with grateful and yearning hearts, we left it up to God.

If you want to know what He did, you should read this. (There may be a good ending!)We had no idea what we were in store for when we brought her home from the NICU. They stocked us with feeding tubes, extra leads, syringes, like that would be what we needed. What our care package should have included was wine, espresso and unlimited counseling sessions.

Nothing can prepare you for having a baby. Nothing on your registry. Nothing in a book. And then to have a special needs baby- oh how I hate that term!! The State of Indiana is LUCKY that they changed their "Crippled Children's Insurance" to "Special Health Needs" something or other. They were about to have an exhausted-over-caffeinated-hyper-emotional freak on their hands. It could have got very ugly, very fast.
This picture was taken the day Ella got her first pair of glasses. She was 4 months old. Before this day, she never held her head up and looked around the room. Some kids with vision problems don't look around because their blurry vision makes for a very scary world. This day, she sat up straight, and enjoyed her world, squishy book and all.
You may not see from my face how painful our life was, but that's just because I've become a great hider, not one of my proudest accomplishments. If you allow your emotions and all the chaos running around in your head to be seen, it's hard to function and no one wants to hang out with you.

We didn't even know what a cleft palate was, nor Pierre Robin Sequence. No disrespect to Mr. Robin (pronounced row-ban), but I have little admiration for a doctor that names a serious disorder after himself. What an ass.

I didn't know CPR or how loud an apnea monitor could sound. I didn't know how to change a feeding tube, in public, with no supplies. I didn't know the difference between a CC and a mL. To be honest, I never wanted to know. Some days I still wish I didn't. But, deep in my heart, way past all the present-day stress from this situation and way past all the old trauma that lingers, I know that someday this will all be worth it. That this story will mean something to someone. That I'll change a G-tube in public for a mom who doesn't know how. That I'll find a family with no health insurance to bless with the thousands of dollars worth of unused medical supplies we have. That I'll hold someones hand, maybe dragging them a bit, pulling them out of the muck of their childs own health problems. Someday, I will thank God for this experience and it will be worth it.
It's not like we haven't already been blessed. We watched a miracle take place with the healing of Ella's eyes-most people never get to experience anything like that. We were shown an overwhelming amount of love through time, food, cards, hugs. God put people in our life that we never imagined would be the people who stepped up and loved us. We have become a resource for others who don't know where to go, what to do. God has provided for all of our needs.

As for me personally, I've found great friends in the 4 therapists that grace my life every week. They don't judge me for wearing sweatpants at 2pm, for having dishes in the sink, for breaking down, for needing a hug. I've had my faith tested, stretched, stepped on, renewed - only to stand up straighter at the end. I have seen the strength that I didn't know I had. I have experienced the power of prayer. I have taken a messy house to a whole new level. I have learned to drink black coffee!Some things just take time. The picture on the left is Ella when she was around 6 months old. The picture on the right is Ella at 2 years old. After you get over the shock of her hair color change, notice how her chin has grown dramatically; they said it would. Like most things that are significant and lasting, it took time. Lately, I have been catching myself as I talk about Ella in front of Ella. Weight gains, weight losses, g-tubes, speech delays, torticollis, therapy, allergies, sinus infections, blah, blah, blah. I notice how when I talk about these things, she stops and listens. It scared me the first time I told the girl in the nursery at church that she had a g-tube and Ella pulled up her shirt and showed her. She's listening. They are all listening. The power is in our hands to speak goodness and peace in to our children's lives.

I never got in to all those "parent help" websites. Yes, they contain valuable information, yes, there may be people who have been through what I am going through, yes, I know. But, what bugs me is that those parents are defining their children by their diagnoses, their meds, their problems. Over time, they also start defining themselves by their childs problems. "Lori, Mom of Jack (Downs Syndrome, GERD, speech delays, motor planning issues, Lactose intolerant, circumcised, hyperactive. On Reglan, Prevacid, Claritin. Has G-tube, inhaler, etc)" I made Lori up, but if you have been on any of those sites, you know what I'm talking about. If we define Jack that way for long enough, he will believe that is all that he is. If he ever gets better, Lori won't know who she is.

Some days I see an end in sight- a finishing point for all the madness. Some days, I can't see till dinner. Maybe I won't make it. Maybe I'll die of a coffee overdose before naptime. Maybe I'll never see how it all turns out. Or maybe I'll live till tomorrow and with coffee in hand, I'll watch her run and play and see her as she really is, Ella (sassy, snuggly, always laughing, gourmet food loving, pink nail polish-wearing, pro-bare foot, loved beyond measure, healed, hilarious, grateful, lover of life).

Go shorty, it's your birthday.

2009-05-18T09:50:00.003-04:00

I am 28.

I was hoping this day would come and go and no one would remember. No such luck. We were almost in the clear 2 days ago and not a word had been spoken about it. But then, my Mom said she wanted to make me birthday dinner. Some could make is Sunday. Some could make it Monday. No one day would allow everyone to make it. Let's just wait till next weekend, I said, hoping that would be enough time to forget about my birthday and move on to the other birthdays that are taking place on the weekend. How about tonight, she asked. Shit. I had no where to go, no plans I couldn't break, no reason it couldn't work. That is how I was tricked in to a birthday party.

I woke up this morning, on the 18th of May, and felt like a truck ran over me in the night. You should have seen my hair! Nick has gotten quite good and unfortunately, quite used to seeing me look like a Gremlin in the morning. We made coffee, he hugged me, I cleaned up (barely) and sat down to check my Facebook wall posts because I knew there would be some. It's days like this when we HATE Facebook because we don't real presents and cards in the mail anymore; we get Facebook messages if we are lucky and free gifts, like Lil' Green Patch babies with flowers strapped to their heads.

I don't want you to think that I'm an ungrateful snot for not wanting to have my birthday acknowledged by the woman who birthed me and all of her other loud relatives (my siblings, etc.) But I knew it would turn in to a clone of what Grandma would have done, if she hadn't of died earlier this year, and I didn't want that.

My Grandma never skipped a birthday, a holiday, a reason to party. My aunt told a story at her wake of how they used to celebrate Washington's birthday with a cherry pie. She never skipped spoiling me for Halloween or Valentine's Day or any day to make cookies and eat Crunch. In college, my roommate and I would eagerly await our care packages of homemade diabetic coma cookies. Yum.

And this year, being the first year she was gone, I didn't want to have a cheap imitation of what she would have done. Not yet. I'd rather have started a new tradition of chinese food for my birthday. Fortune cookies for everyone!

I won't lie and say that I haven't felt God's arms wrapped tightly around me in the last few days. He knows my heart, he knows my tears. It's probably His fault I'm a crier, anyway. But like Saturday, when I was given an unexpected Starbucks gift card--which always makes my brain happy. And then my favorite almost-family member came to visit and played with my kids until they passed out. Two times this weekend I played tag with my kids. We laughed so hard that we almost peed our pants and laid in the grass until ants were crawling in our hair. Yesterday I took a nap and Nick made us fancy egg sandwiches for lunch. This morning, my kids slept in till 10am, which is a miracle, for sure. And while they were sleeping, I got to read this and this and this and this and this and this - all my favorite blogs- in peace. While doing that, my mom brought me a Grande soy Latte from Starbucks and a gift certificate to our favorite restaurant on the planet, Brewsters. The kicker is that she will babysit the kids Saturday night and keep them till Sunday!

On a normal year, I would be picked up by Grandma in about an hour and we would go to lunch at Lula's or one of our other regular spots. We'd go shopping and she'd let me pick out all of my own presents - something I enjoyed more and more as I got older. When we started to get worn, we'd get some coffee and reevaluate to see if we had one more store in us. Except for the few years we were in California, I never missed a birthday date with my Grandma.

She always bought funny cards. She thought aging was humorous and something to be laughed at. When Papa gave me a card on Saturday night, it started off by saying "It's not a year for a funny card." But maybe that is exactly what it is.

Maybe we should watch funny movies till our cheeks hurt and dance around till our old creeky legs give out. Maybe we should play tag and stand on our heads until we pass out. Maybe we should fake laugh until the real laughs manage to break through.

Maybe I should do another sommersault- so my kids can laugh at my flailing legs as they hit the air. Maybe I should watch all my favorited youtube videos until I cry. Maybe I should pee my pants. (Due to extreme laughing, of course!)

I must go. I'm meeting Papa for lunch in 45 minutes and I've still got the Medusa hair-do. If I cry in front of him, who the hell cares? Life's too short to hold in so many tears -- it'll just give me wrinkles too fast!

Enjoy some of my favorite videos today.

Paul Potts
Dream Big
Spinach or Spanish?

A beautiful bride

2009-05-14T14:34:00.003-04:00

I saw this on a friend's blog today. Read the story, then click on the story. Go through the pictures. Try to breathe. Try not to let tears drip in to your keyboard. Appreciate the time you've got.

A Beautiful Bride

Why Wednesday

2009-05-13T22:55:00.002-04:00

This post is inspired by my BFF, Brooke Fuller. She's a stud. Along with being a Mom to 2 very small children, she is a great writer, an awesome financier, a successful baby carrier creator and duh, my BFF. We were college roommates. You often hear of roommate nightmares, where your roommate didn't shower, shave, ate all your food without permission, had a kinky obsession with dogs, etc. You don't often hear the story that we share: a perfect match. You think I'm kidding? Well, fine. Don't believe me. But, believe that on our first night in Shupe hall, I was still modest and changed into my PJ's in the bathroom. When I came out, we were wearing MATCHING PAJAMAS. That is no coincidence. I love her to death. I dedicate this Why Wednesday, the first of many, to my Twin B.

WHY did I get so lucky as to just have an addiction to coffee rather than say, crack?

WHY does Owen wake up so early in the morning, no matter if he stays up late or goes to bed early, nap or no nap. When will it end?

WHY do I care so much what people think of me?

WHY can I never live in the same location as my BFF?

WHY does bread not mold when you put it in brown sugar?

WHY do I waste so much time?

WHY do I always want a sugar cookie at 11pm?

WHY don't we appreciate how good we look when we are young? Why does it take aging and looking worse to say "Oh my gosh. What wasted energy!"

WHY would anyone want to market themselves under "Exotic Services" anyway?

WHY don't you send me a nice birthday present in the mail?

Ham of God

2009-05-12T15:01:00.004-04:00

In the days before my Grandma died, she never wanted to be alone.

She started off the 6 day hospital stay leading up to her death with confidence and peace. But then there was a procedure that failed and an anesthesiologist that failed. Just a simple procedure we were told and told her, but one that she ended up feeling every second of. The pain meds didn't work. She said it felt like she was being kicked in the stomach repeatedly and she was screaming for help, but no words came out. It was like a bad dream.

And so, my sweet Grandmother who loved more than everyone I ever knew, didn't want to be alone.

Sometimes we sat in shifts, one at a time. Other times, there were 10 of us in the room, watching movies, typing on laptops, reading books.

On the morning before she entered the semi-coma that she never woke for long from, my Mom took her turn with her Mom - sitting with her quietly, holding her hand, never leaving. She had the book that I had brought for Grandma to read during her stay-- assuming there was more time--Plan B: Further Thoughts on Faith by Anne LaMott.

Anne LaMott is my favorite author. I first read Traveling Mercies while sitting next to Ella in our old NICU days. Like Grandma, we took turns sitting by her side, holding her hand, letting her not feel alone. When my Mom and Nick would take their shifts, they read Traveling Mercies too. It was healing for our souls. It made us laugh and let us cry. Grandma wanted to read it after our five-star reviews and so we passed it along. It's been passed to many of my friends and family and is out on loan to Ella's O.T. right now. I was hesitant to let Grandma read it because Anne talks a lot about cancer and dying from cancer. I thought it would make her sad, but instead it made her happy. It discussed raw-ly (is that a word?) what she was going through. There is no sugar coating with Anne LaMott. That's why we love her so.

Anyway, on this particular day, as my Mom was reading the first chapter of Plan B, she started laughing out loud. My Grandma, who had been in and out of sleep, looked at my Mom and said "Well, what is so funny?" She told. "Well, I want to hear it too."

And so with tears and hysterical laughter, my Mom read her Mom a story for the first time in her life. The woman who made her children love books because of the thousands she read to them, was hearing her first born read to her. Laura, my Mom, is not a crier. But, the whole scenario - Anne LaMott, cancer, hospital, reading to her Mom, death - brought her to tears.

Her Mom turned back in to the mom and then started holding her hand and saying "It's OK. Everything will be OK. " A true Mom never takes a break.

And so, on this beautiful May day, as I try to forgive May for overflowing with celebration, I share the last story my Grandma ever heard by my dear friend, Anne LaMott. (If you know her, let her know I want to be her friend, please.) Yes, she gets political. Yes, you may not agree. Just promise you'll read it all the way through.

"Ham of God" by Anne LaMott from Plan B: Further Thoughts on Faith

On my forty-ninth birthday, I decided that all of life was hopeless, and I would eat myself to death. These are desert days. Better to go out by our own hands than to endure slow death by scolding at the hands of the Bush administration. However, after a second cup of coffee, I realized that I couldn't kill myself that morning-not because it was my birthday but because I'd promised to get arrested the next day. I had been arrested three weeks earlier with an ecumenical bunch of religious peaceniks, people who still believe in Dr. King and Gandhi. Also, my back was out. I didn't want to die in crone mode. Plus, there was no food in the house. So I took a long, hot shower instead and began another day of being gloated to death.

Everyone I know has been devastated by Bush's presidency and, in particular, our country's heroic military activities overseas. I can usually manage a crabby hope that there is meaning in mess and pain, that more will be revealed, ant that truth and beauty will somehow win out in the end. But I'd been struggling as my birthday approached. So much had been stolen from us by Bush, from the very beginning of his reign, and especially since he went to war in Iraq. I wake up some mornings pinned to the bed by centrifugal sadness and frustration. A friend called to wish me Happy Birthday, and I remembered something she'd said many years ago, while reading a Vanity Fair article about Hitler's affair with his niece. "I have had it with Hitler," Peggy said vehemently, throwing the magazine to the floor. And I'd had it with Bush.

Hadn't the men in the White House ever heard of the word karma? They lied their way into taking our country to war, crossing another country's borders with ferocious military might, trying to impose our form of government on a sovereign nation, without any international agreement or legal justification, and set about killing the desperately poor on behalf of the obscenely rich. Then we're instructed, like naughty teenagers, to refrain from saying that it was an immoral war that set a disastrous precedent--because to do so is to offer aid and comfort to the enemy.

While I was thinking about all this, my Jesuit friend Father Tom called. He is one of my closest friends, a few years older that I, a scruffy aging Birkenstock type, like me, who gives lectures and leads retreats on spirituality. Usually he calls to report on the latest rumors of my mental deterioration, drunkenness, or promiscuity, how sick it makes everyone to know that I am showing all of my lady parts to the neighbors. But this time he called to wish me Happy Birthday.

"How are we going to get through this craziness?" I asked. There was silence for a moment.

"Left foot, right foot, left foot, breathe," he said.

Father Tom loves the desert. A number of my friends do. They love the skies that pull you into infinity, like the ocean. They love the silence, and how, if you listen long enough, the pulse of the desert begins to sound like the noise your finger makes when you run it around the rim of a crystal glass. They love the scary beauty-snakes, lizards, scorpions, the kestrels and hawks. They love the mosaics of water-washed pebbles on the desert floor, small rocks that cast huge shadows, a shoot of vegetation here, a wildflower there.

I like the desert for short periods of time, from inside a car, with the windows rolled up and the doors locked. I prefer beach resorts with room service. But liberals have been in the desert for several years now, and I'm worn out. Some days I hardly know what to pray for. Peace? Well, whatever.

So the morning of my birthday, because I couldn't pray, I did what Matisse once said to do: "I don't know if I believe in God or not...But the essential thing is to put oneself in a frame of mind which is close to that of prayer." I closed my eyes, and got quiet. I tried to look like Mother Mary, with dreadlocks and a bad back.

But within seconds, I was frantic to turn on the T.V. I was in withdrawal-I needed more scolding from Donald Rumsfeld, and more malignant celebration of what everyone agrees, in April 2003, was a great victory for George W. Bush. So we couldn't find those stupid weapons of mass destruction--pick, pick,pick. I didn't turn on the T.V. I kept my eyes closed, and breathed. I started to feel crazy, and knew that all I needed was five minutes of CNN. I listened to the birds sing outside, and it was like Chinese water torture, which I am sure we don't say anymore.

Then I remembered the weekend when 11 million people win the world marched for peace, how joyful it was to be part of the stirrings of a great movement. My pastor, Veronica, says that peace is joy at rest, and joy is peace on its feet, I felt both that weekend.

I lay on the floor with my eyes closed for so long that my dog, Lily, came over and worriedly licked me back to life. That cheered me up. "What did you get me for my birthday?" I asked. She started to chew on my head. That helped.

Maybe the old left is dead, but after we've rested awhile we can prepare for something new. I don't know who on the left can lead us away from the craziness and barbarity: I'm very confused now. But I know that in the desert, you stay out of the blistering sun. You go out during the early morning, and in the cool evening. You seek oasis, shade, safety, refreshment. There's every hue of green, and of gold. But, I'm only pretending to think it's beautiful; I find it terribly scary. I walk on eggshells, and hold my breath.

I called Tom back.

He listened quietly. I asked him for some good news.

He thought.
"Well," he said finally. "My cactuses are blooming. Last week they were ugly and reptilian, and now they are busting with red and pink blossoms. They don't bloom every year, so you have to love them while they're here."

"I hate cactuses," I said. "I want to know what to do. Where we even start."

"We start by being kind to ourselves. We breathe, we eat. We remember that God is present wherever people suffer. God's here with us when we're miserable, and God is there in Iraq. The suffering of innocent people draws God close to them. Kids hit by U.S. bombs are not abandoned by God."

"Well, it sure looks like they were," I said. "It sure looks that way to their parents."

"It also looked like Christ had been abandoned on the cross. It looked like a win for the Romans."

"How do we help? How do we not lose our minds?"

"You take care of the suffering."

"I can't get to Iraq."

"There are folks who are miserable here."

After we got off the phone, I ate a few birthday chocolates. Then I asked God to help me be helpful. It as the first time that day that I felt my prayers were sent, and then received- like e-mail. I tried to cooperate with grace, which is to say, I did not turn on the TV. I asked God to help me again. The problem with God- or at any rate, one of the top five most annoying things about God- is that He or She rarely answers right away. It can take days, weeks. Some people understand this-that life and change take time. Chou En-lai, when asked, "What do you think of the French Revolution?" paused for a minute-smoked incessantly-then replied, "Too soon to tell." I, on the other hand, am an instant-message type. It took decades for Bust to destroy the Iraqi army in three weeks.

But I prayed: Help me. And then I drove to the market in silence, to buy my birthday dinner.

I flirted with everyone in the store, especially the old people, and I lightened up. When the checker finished ringing up my items, she looked at my receipt and cried, "Hey! You've won a ham!"

I felt blindsided by the news. I had asked for help, not a ham. This was very disturbing. What on earth was I going to do with ten pounds of salty pink eraser? I rarely eat it. It makes you bloat.

"Wow," I said. The checker was so excited about giving it to me that I pretended I was, too.

How great!

A bagger was dispatched to the back of the store to fetch my ham. I stood waiting anxiously. I wanted to go home, so I could start caring for suffering people, or turn on CNN. I almost suggested that the checker award the ham to the next family who paid with food stamps. But for some reason, I waited. If God was going to give me a ham, I'd be crazy not to receive it. Maybe it was the ham of God, who takes away the sins of the world.

I waited ten minutes for what I began to think of as "that fucking ham." Finally the bag boy handed me a parcel the size of a cat. I put it in with feigned cheer into my grocery cart, and walked to the car, trying to figure out who might need it. I thought about chucking the parcel out the window near a field. I was so distracted that I crashed my cart smack into a slow-moving car in the parking lot.

I started to apologize, when I noticed that the car was a rusty wreck, and that an old friend was at the wheel. We got sober together a long time ago, and each of us had a son at the same time. She has dark black skin and processed hair the color of cooled tar.

She opened her window. "Hey," I said. "How are you--it's my birthday!"

"Happy Birthday," she said, and started crying. She looked drained and pinched, and after a moment, she pointed to her gas gauge. "I don't have money for gas, or food. I've never asked for help from a friend since I got sober, but I'm asking you to help me."

"I've got money," I said.

"No, no, I just need gas," she said. "I've never asked someone for a handout."
"It's not a handout," I told her. "It's my birthday present." I thrust a bunch of money into her hand, everything I had. Then I reached into my shopping cart and held out the ham to her like a clown offering flowers. "Hey!" I said. "Do you and your kids like ham?"

"We love it," she said. "We love it for every meal."

She put it in the seat beside her, firmly, lovingly, as if she were about to strap it in. And she cried some more.

Later, thinking about her, I remembered the seasonal showers in the desert, how potholes in the rocks fill up with rain. When you look later, there are already frogs in the water, and brine and shrimp reproducing, like commas doing the macarena; and it seems, but only seems, that you went from parched to overflow in the blink of an eye.

Angie needs a hobby.

2009-05-11T15:44:00.003-04:00

I have nothing to say. I've been sitting here for quite sometime, staring off in to nothing, waiting to be inspired. For weeks, I've been wanting to write and needing to write, but haven't done it. All posts in my mind eventually come around to my dead Grandmother. I've been thinking you would judge me and tell me to get over it. That you would say it was enough time already and read the first sentence and then quickly click to another blog- a funny blog or a blog where they give away free stuff. But, then I remembered that only a few people read this anyway and they like me AND that it is my blog. I started it. I can write whatever the hell I want.

And then I heard Nick say something that twisted the knife: We are all still a little bit "8th grade." Damn! I hated 8th grade, but yet, it is so true. I still always think that everyone notices my zits and when I gain or lose weight or change my hair or by a new shirt. NEWSFLASH: no one cares. I'm glad that no one cares, I really am. I haven't worn make-up for 2 weeks and the people that liked me with make-up appear to still like me without. Don't worry: I'm not going to grow braidable arm pit hair and stop showering. But sometimes, when life feels like a lot, somethings don't seem as important.

Anyway, I'm glad you didn't notice.

Like I was saying, I'm glad no one cares what I say or do or wear....but I still don't believe it. Hmmm. Maybe I need counseling.

Here are some pics from last May:

Normally, May is my favorite month. The flowers are blooming and the tree buds have broken free. The whole month smells like lilacs and fresh-cut grass. The temperature is perfect and I can officially where flip-flops without frozen toes. And it's my birthday. Well, not just mine, but mine is one of them and I love birthdays. I believe in not just a birthday, but a "birthday week" of fun things to do and presents. Oh, how I have come to love presents! I share the spotlight with Nick, who had a birthday last week. Then there is mother's day and my parents anniversary and Memorial Day then both of my Grandma's celebrate a birthday in the same week.

See, it always come back to the Grandma.

I said normally, May is my favorite month. This year though, I'd rather just skip to June. June is a nice month. We can go to the beach in June. I'm hoping that my birthday is forgotten this year. I don't want to celebrate it or have in acknowledged in public. I don't want anyone to sing or ask me what I want to do. I'm hoping that May 18 gets lost somewhere between the baby shower for my new nephew and my cousins wedding. It's on a Monday. No one remembers birthdays on Mondays.

I'm racking my brain to remember what we did last year on May 18. I remember hiding my aunt Kathy for most of the day, while we prepared to surprise my Grandma for her upcoming birthday on the 22nd. We had dinner at her house. I'm not completely positive, but I think we celebrated our birthdays together that night. I can't remember what we ate, or even who was there. I can't remember one present or if we had ice cream or not. It was one of those moments that I tried hard to soak in because I knew it was one of our last. But, it's all a blur.

And so this year, I just want to skip right to June, where the sun is hot and out everyday. Where I won't have to have a birthday without her till next year and where I won't have to remember hers. I yearn for June, where Memorial Day is past and I won't be forced to walk in to a cemetery and put flowers on a plot of settled dirt where they believe she still is and say something nice.

I'm so ready for June.

No, not me...

2009-05-11T14:39:00.002-04:00

I did NOT encourage Owen to have a slumber party last night with my parents so I could have a night with NO SHORT PEOPLE in my bed. No, not me.

I certainly did NOT inform my husband via text message that I think we should adopt an African orphan next year. I wouldn't be caught dead telling my husband something THAT important over a phone. No, not me.

And I did NOT tell my 3 year old about his new African brother and how we will go get him together, before my husband even responded to that text message. No, not me.

And I would NOT EVER go in to public this morning with an old stained gray sweatsuit and dirty hair that was sticking up in every direction. And more importantly, I would NOT include my 2-year old daughter in my "dirty charade" and take her out in an equally ugly pink sweatsuit with purple marker all over her body and no shoes. No, not even me.

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

You didn't know I was a star

2009-04-20T10:30:00.001-04:00

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It's Time For Healing

2009-04-20T10:29:00.000-04:00

This was the first week in a long time that I felt functional in society. It was the first week where I didn't cry at all. It was the first week that I didn't pretend to be smiling when I was. It was going great until I started picking out the pictures of Grandma for this post. Dangit. Well, 6 of 7 days minus tears is pretty good.
I find myself feeling guilty for my feelings, for still feeling broken inside. There is a part of me that has been secretly grieving for some time. Most people in my life expect me to be over this death by now, but I am finding that it was harder than I ever could have planned for - which is why I made a point NOT to plan for it.

I almost called her the other day to tell her some good news. My phone was in my hand before I realized. We were each other's "default plans." Any time we didn't have anything to do, I'd call her and she'd say "I was just thinking I should call you guys!" We spent many days together, many meals together, many conversations. She was young for her age and I think I'm old for mine.

But, it's more than the loss of someone I love so much. It's the whole process of watching someone die, too. I was thinking about when Nick taught in L.A. and there was a shooting, all the kids would get mandatory counseling for the trauma they experienced, heard, felt, saw. Why is it when we know someone will die are we made to feel like it is less trauma? Like it still doesn't feel just as unexpected?

I still go back quite often and reread the post I wrote as I was watching Grandma die. (You can read it here. ) I don't take back anything that I said about the beauty and grace I saw in those days. The praise and forgiveness given in those times were some of the most wonderful moments of my life. It would have wounded me deeply to have not been there, to have been living in CA still and not have said goodbye in person. But, I didn't think those images of her struggling to breathe and crying out in pain would haunt the deepest places in my mind for so long. And those moments after she officially died, where life left instantly and she looked as if she'd been gone for days. For weeks I slept on the couch, slowly falling asleep to the sound of some movie or show, just so I could ignore the images and rememberances of my mind.
I ate dinner with Papa 2 weeks ago. We small talked and tried not to stare at the open chair at the table where she used to always be. I finally asked how he was and to my surprise, he really told me.

He told me about how painful the nights are when he goes to bed all alone after 50 years of having her by his side. He told me about how he's working himself into exhaustion trying to be not home in order to fall right asleep. He told me about how he finds himself talking to her at night-almost forgetting she is gone and how he still plays all her favorite songs on the piano, just like he did when she would sit and listen. He told me about the conversations they had in those last months and years where their love went to "new depths." It was moving and refreshing and it didn't take long before I couldn't hold it in any longer. Weeks of tears burst out and my pretending was done. It was embarassing and snotty and felt so good! I went on to have 3 more REAL conversations about Grandma the next day, with Brooke on the phone, Sam over email and with Nick on the couch--all 3 of them recovering from their own loss like this. After a full day of processing it all, I started to feel a little relief.

I always forget how talking is healing. Why do we hide our feelings and our brokeness from others so often? And how do we get so good at it?

I read on a website about grief that it usually takes a year to get over the death of someone you were close to. There are 365 days that you have to experience without them. There are birthdays and holidays and celebrations that have to be charged through with an empty seat in the room. And then the next year it's not as bad because you've already lived through that specific day without them.

And so, once again, I try and to pick up the pieces--some of the old ones and some new ones--to try and reassemble some sort of "normal" life where death isn't always on my mind. I think of all the life changing events I've gone through in my short adult life and know I wouldn't be standing without God's great grace. He can take some of the shittiest situations and turn them in to the most glorious masterpieces. Beauty from ashes. Grace from disaster. Life from death.

Cardboard Testimonies - YOU'VE GOTTA SEE THIS!

2009-04-17T13:54:00.001-04:00

Cheers!

2009-04-02T14:19:00.004-04:00

I generally make it a rule to not drink during the day. Mind you, I stay hydrated with lots of coffee and chugs of water throughout my life. However, I don't find it appropriate to drink at home during daylight hours or if my kids are awake or by myself.

Today I break all the rules.

After a great morning then a high stress afternoon of Owen telling me how he doesn't want me to be his Mom anymore and he only wants his Lola (my Mom). And Ella quietly crumbled a piece of bread into a million little pieces, chewed them, spit them into a bowl and then dumped it on the couch and smooshed it in rather nice.

They are both sleeping - or possibly getting in to silent trouble in their rooms. So, I have taken it upon myself to bust open the wine cube and try it out. It's white Sangria and it has blueberries and pineapples floating in it. It is oh-so-delicious. Nick is laughing at me and the kids are asleep. There is peace and quiet here and....

I typed to soon. I hear a girly voice saying "Mama?"

I've learned my lesson with drinking during the day: Next time, drink faster!

Do you forgive me? Yes.

2009-03-23T23:39:00.001-04:00

***Click this video and listen to it in the background while you are reading. I was listening to this song while I wrote this.***

I've been liking Sunday mornings a lot lately. The scene plays with Nick waking up with the kids, making coffee, cleaning kitchen and living room and I roll out of bed when when I'm awake enough to be bored. It's a nice break for me on his only day to sleep in. What a guy.

I'm feeling sentimental this morning. Nothing particular has set if off, but it may be the combination with warm coffee, new pajamas and the kids are in the bath. If it wasn't for the dishwasher and Pandora, it would almost be quiet. I'd probably be freaked out if it was quiet in here. Unless your kids are sleeping, you know that silence = coloring on the walls or washing the bathroom mirror with hand soap.

Raising kids is probably the craziest thing I've ever done. When we were dreaming of having babies and thinking of names, I didn't know that I'd have a little guy who would wake up every night and sleep with me at 3 yrs old. I didn't know that on the lowest of days, I'd be wearing vomit more than once. I must have skipped the chapter on feeding tubes and therapy sessions until I can't see straight. It's been quite the journey.

Mom's are so hard on each other and on ourselves.

With Owen, I didn't produce breast milk. Now, hear me out before you think anything. I tried everything and had a lactation consultant coming to my house to help me and no matter what I took or did, I still couldn't get more than an ounce out on a good day. We stuck it out for 3 months, but eventually the well ran dry. And so on top of being a new Mom, I had failed at breast feeding.

Of course, after the initial grief, there were some perks. Like going out sans baby once in a while and letting other people carry the burden of feeding an always hungry baby. I loved making a bottle and letting my Dad help. It helped him bond with Owen and it helped Owen trust him. They are still buddies today.

Over time and many tests and doctors later, we found that it was my stupid little thyroid that messed with my hormones that messed with my milk. My body thought I was still pregnant hormone wise, so why produce any milk?

And then Ella came. I had talked to every breastfeeding resource I could and no one saw any reason why this baby wouldn't have milk. But, I had skipped over the chapter on cleft palates and breastfeeding a "special" baby. There was milk this time, but a baby who had no ability to suck. We tried it all, again. I appreciated all the nurses in the NICU who never said that it was impossible and let me try. After 2 weeks of trying and 3 "blue spells" later, I confidently retired as a breastfeeding mother.

Thanks to a persistent Lactation Consultant and the "coincidence" of a famous breastfeeding advocate as the on-call pediatrician, we made a case for breast milk and won.

I wish I could hug her and thank her with gifts and take her to dinner and tell her she can order whatever she wants. But unfortunately, I never got her name, just her donor number. She is a mother to someone else, but for 2 weeks she helped mother my sick baby with breast milk that was donated in little clear bottles. For a sick baby, that is a gift that is invaluable.

And I wonder if you ever feel guilty parenting your children, too. Like there was too much PBS today or not enough green things on their plates. Or you didn't use cloth diapers and think you should have, or forgot to take your prenatal vitamins for what seems like most of the time. I don't know if you're like me, but doesn't it sometimes seem hard to get this thing right? I mean, these are little people we are talking about here and I know that none of us want to be the cause of lots of therapy later on, right?

I was thinking that I needed to forgive myself for being a basket case of a parent. Spring is here and it's all about new life and starting over and I thought, "What the hell, why not try for round #246 and see how it goes?"

Ella and I haven't gotten along for some time. I know what you are thinking: she is 2. She may be 2 and small, but she is a force to be reckoned with! We fight about eating and drinking all day long. I cry daily as she throws partially chewed food on the floor and I yell, "That was 7 calories!" Ella cries daily as I put her in time out. She is a toddler in every sense of the word and we are both strong-willed to the core. I was seeing no end in sight.

But, yesterday something amazing happened: she snuggled up next to me on the couch. I thought it was sweet and a fluke, but later she did it again. And throughout the day, I found us laughing on the couch-together- with no tears. Today it happened again. Instead of watching Sesame Street from her Dora chair, she crawled on the couch and snuggled with me. She points at herself and says "Ella," and then points at me and says "Mama." Such a simple communication, but it warmed my heart. It was as if she had decided to forgive me too. And for a moment, I didn't feel that it was my fault for her small size and her still needing a feeding tube to live. It was just a few seconds, but it was one of those moments where you connect with another human being in a way that is beautiful and uncomfortable and her delayed speech and purple glasses and crooked teeth and high shoulder blades were all gone. It was just a mama and a baby: the way it was always supposed to be.

I got excited tonight because I imagined Ella becoming my permanent sidekick. My shopping buddy. My paint-our-toenails-blue-together buddy. I liked the idea and I think it's worth working towards. I think there is still time for us to make up for the bonding that we missed so painfully and needed so desperately.

So, tonight as I wipe away healing tears from my eyes and listen to Jon Foreman, I hope you give yourself a break from all that you think you've done wrong and let the 63 degree weather tomorrow warm your soul. Run crazily with your children outside and get dirt under your fingernails and let your hair frizz out. Screw up and ask them to forgive you- they will. Be brave and wear shorts (!!!!) and let the March sun burn your face (it's easier to hide the tears!!!).

How can I keep from sneezing?

2009-03-02T10:23:00.002-05:00

Ella just got time-out for biting Owen's arm. Instead of setting the timer for 2 minutes (her age appropriate time), I set it for 4. I felt a little guilty, but no, not really. I'm sure there was a pretty good bite in there I missed, so it was accumulating anyway.

I've been sick for 10 days now. I usually get sick once a year and it's a few days of inconvenience, but nothing more. This time, I can't shake it. Neither can my kids. So, the three shorter Liskey's have been stuck in the house for a week. We've got rolls of toilet paper at every turn and an entire trash can filled with "snot rags." So you see, I needed that extra 2 minutes.

Being held hostage by germs is an obnoxious and humbling experience. Obnoxious in that I haven't tasted or smelled in 6 days. Obnoxious in that I couldn't leave if I wanted to because walking to the car makes me need a nap. Humbling in that I have to ask for help. Humbling in that I'm not able to get anything at all done. Probably the most humbling thing is that while I was laying on the couch, shaking, with a fever, my dear friend, Sam, was having emergency surgery on an appendix that had already served it's purpose. I'm sick and miserable, but thank God I'm not losing organs (even if they are completely useless).

And then I think of my sweet Grandma, who moaned in pain as the cancer took over every cell in her body. She downplayed the pain every time I saw her. I would watch her sometimes and when she thought all eyes were off of her, she would wince and sometimes cry. She was always thinking of everyone else, even down to her last days.

I talked to my Mom a couple weeks ago about what had happened at that last doctors appointment when they knew there was nothing they could do. The PET Scan revealed that the cancer was in her neck and lungs and to the nerves in her shoulder. The cancer that was discovered in her pancreas over 2 years ago, took it's time, but eventually made its way to her liver. It seems that everyone knows what that means, when it finally makes home in this vital organ. People would say "it's not in her liver yet, is it?" And so the day she found out it was, she came home and took a five hour nap, while my Mom and aunt frantically tried to arrange for Hospice, Med-Alert bracelets and dinner that evening. We were asked to come to dinner to help cheer her up. No one said what was going through their mind, but we all knew.

Grandma was in the the best mood she was in for months. She walked around and smiled and laughed. She ate at the table and wanted to watch a movie. Of course, I was on the verge of tears all night and watcher her in awe. I wanted so bad to know why she was happy and peaceful and how I could have that too. I never asked her.

And so as I sat with my mom in the Chocolate Cafe, we talked about Grandma and her life and that entire strange day. Maybe Grandma felt peace that day because she knew that she didn't have to fight anymore. That it was time to rest- with a five hour nap to start, but forever, to rest. Or maybe it's my other theory-the theory that would be just the kind of thing that she would do. Maybe this is what she already knew, that it was nearing the end and she had to just be strong for us to help us get through. And after Dr. Jin told her that they'd done everything under the sun, she thanked him and hugged him and walked away. The nurses who have taken care of her all this time were sobbing and hugging her. She was strong for them, like a Grandma always is, and left in good spirits. It was like she already knew and she was just waiting for everyone else to know, too.

Her sleep that afternoon was sound. And when she awoke, she didn't have to be scared anymore. She still had actual death to face, but the part of the journey she had just endured, that was the hard part. So, that night, she didn't pretend that she didn't know the cancer had spread to all those aching body parts. How freeing it felt, as we saw in her that night.

Five days later she started her first radiation treatment and never had another. Seven days later she died. It still pains me how fast this all happened. I needed more time. It's been a month that's felt like a year and it could have all been a dream. On the other hand, would more time have been better? Would months of suffering broken us all beyond immediate repair? Probably.

And life goes on, kind of, in this new altered weird state. We still have to sleep and work and buy groceries and call friends. But there is this piece missing from my day, and my Papa's day, I'm sure. A month has gone by, but I feel like everyone needs me to be past it. And so I don't cry until I write or Owen says "Did Grandma die?" like he did about 10 minutes ago. "Is she in Heaven with Grandma Betty's cat?" Yes Owen, I think she is. "Are they friends?" Yes, of course they are friends. (I don't have the heart to tell him that my Grandma HATED cats. If cats go to Heaven, you can be sure that Grandma's got rules about cats their, too!)

No doubt, germs are too blame for this mess of sickness we find ourselves in. But, I wouldn't doubt a connection between my weakened immune system and a broken heart. Just seems like the germs knew the right time to strike. And I'm sure that as the sun comes out for good and the snow stays away, our bodies will start to recover slowly, along with our hearts. And as the grass grows and flowers start to escape from their bulbs, we will too see new life spring up in our lives. If you didn't already know, my brother and Elisa will become parents in July as a beautiful little boy will come in to our lives. They think they are just having a baby, but I know what babies do: they help us heal in all our broken places.

There is so much joy in my life and so many miracles that we have seen, how can I keep from singing? But until then, I'll leave the toilet paper within reach.

Everything rides on hope, now

2009-02-14T14:13:00.004-05:00

I have been wanting to write. I have been needing to write, as well. I have a lot to say and find this to be my "free therapy" without the awkward silences. But, my heart has been so heavy and full of so many things that I've been finding the idea of facing it all quite painful.

Grandma's funeral was 4 weeks ago , I think. Seems like a million years ago, but in the same muffled breathe, only moments have passed. I miss her terribly. I almost called her on my way home from the doctor last week to tell her the new news about Ella's seemingly never-ending health problems. But, before I pressed "send", I remembered. And this morning, as I called to ask my Grandpa, whom we all call "Papa," over for dinner, I just couldn't hang up and listened to her voice on the message.

And right now, as I sit at my cluttered desk, with pictures and papers and lots of "to-do later" types of things, I am looking at her car out of my window. Technically it is my car now, but it is still her car and I want her driving it, not me.

When I went to retrieve the keys to my newly bequeathed car, it was the first time I was in her house since the mass exodus of family members the week after she died. I'd seen Papa a few times, but it was always at an alternate location. His note had said that the keys were on the counter. They were there. They were her keys on her key chain. Her wallet and purse sat just across the way, just like she wasn't gone at all. Her house smelled the way it always had, but it felt different because she wasn't in it.

My Dad and I had a good talk on the way home from the hospital one night. It was one of those chats where you can't look at the other person out of fear of hysterical, loud, snotty sobs on impact. He said that we are supposed to learn about death from our Grandparents, it's the circle of life, basically, in a lot less "Lion Kingy" type of way. And in a lot of ways, there is so much truth to that.

But my life was different. I grew up knowing my grandparents intimately, as they helped raise me. I grew up seeing them weekly, if not daily. I know stories of their lives and their siblings and the high schools they went to in Utah. My experience with my grandparents was more equivalent to that of parents. How lucky am I to have so many people that loved me.

When we were back at the hospital all those weeks ago, we were just sitting around waiting for her to die. It sounds morbid and terrible, I know, but it was reality at that point. It was what I was praying for, to be honest. To be set free from pain and medications and have a new body and peace overflowing; it was time for her to go. I thought I had processed through all that had happened to that point, until my Aunt Kathy reminded me of something I had forgotten. She said that this must be extra hard for me because I'm not losing my Grandma, I'm losing my "Bama Sharon," which was my name for her for the years my Mom and I lived with her. Years that I didn't remember or realize mattered until I heard the name my 2-year old mouth could only say.

I believe that loss is processed on many different levels. I first learned that when my high school/college boyfriend and I split up, for the last time. He was an ass, for sure, but still I had to grieve the death of that relationship many times, on many different days.

And in a much more tragic and heartbreaking way, I am seeing the different levels that are showing up these days and trying to appropriately acknowledge them. Like Valentines Day. My Grandma celebrated every holiday with her favorite medicine: all things sweet. And without fail, every year I received a sugar-filled package of goodies and a card stuffed with money. In the married years, Grandma would give Nick and I $50 to go out to dinner. I loved that she cared about our marriage enough to do that and throw in some free babysitting. Anyway, this Valentine's Day felt a little lonelier, a little less sweet.

And Ella's 2nd birthday, which was celebrated at her house yesterday, we ate a meal she would have made (not as tasty, but edible) and I even sat where she sat, but she was not there. That day last year she made spaghetti and laughed and hugged her grand children. I missed her at Ella's party. I could smell her and hear her laugh, but she wasn't there.

Owen is asking about her less and less. He's not worried anymore because this summer he is going to build a flying car and go get her. Jesus should have fixed her by then, he says, and we'll just bring her home. My heart bleeds tears when he says those words. There is nothing to be said. I can't help but hold him and cry.

We spent the last week on the beach in the Bahamas. Owen became an excellent collector of shells while we were there. On the day we arrived home my Mom came over to welcome us back to the land of ice and snow. Owen gave my Mom all the shells we had collected and told her she needed all of them. They were magic shells, apparently, and to have them meant that you could not die. And so my Owen, was trying to prevent the loss of another Grandma.

I love children and the raw hope that is just a part of their being. I hope he never loses that hope. I hope that on our worst days, Owen's sweet stories of flying cars and magical shells will be enough to bring us smiles and laughter for the next moment.

I love every rotten last one of you.

2009-01-25T23:17:00.011-05:00

The smell of burnt coffee and instant hand sanitizer is on my hands. I don't remember what day it is or what I'm supposed to be doing tonight. We've been at the hospital for days and I might have an ulcer. Maybe not, but lots of coffee and no sleep = not good. Singin' in The Rain is on right now and I'm remembering watching this movie as a child, with my Grandma. She's watching it with me now, but in and out every few minutes. I see her feet twitching and I'm imagining her trying to keep pace with the music. She's been holding on all week, waiting for something, to just let go. I imagine her first day in Heaven, greeted by her Aunt Beth and Mother, with chocolate cake and mashed potatoes and gravy in hand. "My aunt Beth made the best chocolate cake," she said to me a couple weeks ago. So good, I hear, that she woke up in the middle of the night dreaming that Aunt Beth made her a delicious treat and went and made brownies. By the time they were done, she was too exhausted to eat them, but took one to bed with her anyway. When she woke up hours later, a nicely cut little brownie was perched upon a plate on her chest. She laughed and ate it. Days later, as she finished off the last of the brownies, she dropped it on the floor in the middle of the night. Damn, she thought. But, with the sass and will that has got her this far said "I will get that brownie if it's the last thing that I do." Thankfully, it was not the last thing she did.

I've never watched someone die. I've never even thought about watching someone die. And before last week, I wasn't sure I ever wanted to.

But, as we've sat here all these days, these long and wearing days, I'm seeing a side of death that I'd never seen before. A side of death that is peaceful and forgiving where hope is present and love is near. I am not sure what happens first: your body telling your mind it's time, or your mind being made up and waiting for your body to follow suit. Whichever way is happening here, it's almost beautiful.

Now, to know myself and watch myself type the words, I am in utter disbelief. I have historically been terrified of death and it's processes that I've only experienced via email from friends or movies found in "Drama" section of the video store. But even with the hope of Heaven, I thought that I'd want to hold on to the bitter end, at all costs, with every intervention and only give up when my body could go no farther. But as I watched my Grandma fight while it was time to fight and surrender when medicine could do no more, I saw grace pour in.

My aunt Mary calls the pain medication "truth serum." Yes, it's as wonderful and scary as it sounds. Grandma is being awful truthful, as she asks my cousin Dante and his wonderful girlfriend, Rachel, "How do you guys do this when you live so far away?" (referring to the fact that Rachel is in graduate school in Illinois and Dante is in graduate school in Oregon). Obviously a question that has been on her mind, but was too polite to ask. We were told today to "not name our children dumb names," and that Papa would be enforcing this law. But other, less laughable things were said, like "I love you and I'm proud of you." I'm sure you could imagine the earth shattering tears that accompanied that comment. She held out her hand and said "We are either going to have this conversation now or in the next 6 months (referring to the 6 month or less Hospice involvement rule), so let's have it now." My stomach was in knots and turned and as she said the words that everyone needs to hear. I grabbed her face with my hands and I kissed her all over and tried to memorize the way her face felt and her skin smelled. She told me how proud she was of Nick and I for the way we dealt with the Ella situation. She knew it wasn't easy and thought we had handled it with grace. No one has ever said that before. I regret many decisions I made and many that were made for me. I feel like we were and still are a complete and utter mess. But, Grandma doesn't.

One of the things I will painfully miss is our weekly lunches. For the last 3 years, we've been going out to lunch together, with the micros (Grandma and Papa's name for my kids). We talk and laugh and usually go get fancy coffee afterwards. I get double tall soy lattes and she gets a small cranberry orange tea. We usually get a large cookie that we have no room for and chase the kids around Barnes & Noble until we all need a nap. Of course, in the last few months, the nap times have come quicker and quicker. Anyway, when Grandma had her "reducing everyone to tears moment," as she so wittingly named it, with me, I told her I loved and would greatly miss our lunches. They were something I really looked forward to every week, as did my children. I told her that I felt like she was the only person who understood what I was going through with Ella. Not because of the diagnosis, but because she knew what it was like to be poked all the time and to feel scared in a way that could never be explained. She had a special understanding of Ella, as we saw was reciprocated when Ella discovered Grandma's port and touched her own G-tube as to say "You understand!"

Not to sound too much like a Tom Cruise movie, but I will miss our conversations.

Right now, I'm watching Grandma sleep and listening to Singing In The Rain, again. Something about dying makes you remember what you love, like musicals. And lemon donuts. And chocolate cake.

We can't tell what is going on here, but know it is close to the end. She's said goodbye half a dozen times, but keeps coming back. We've heard everything from "Sweet dreams, I'm going home" to "Bon voyage!" (my personal favorite)

I am surprisingly calm as I watch her labored breathing. I believe I'll see her again, in another place where we can be together uninterruptedly. I picture Grandma in Heaven doing all the things she always wanted to do, like roller skate and bike ride. Her body will be new and strong, she'll wear her old cat frame glasses. She'll play cards with her mother and aunts. There may even be some dancing and- hold on to your hats - cussing. I won't know for a while, but I think that the people we love are waiting with signs and a party when we come home. All the things we love most in life are there, and Jesus. Lots of Jesus. There is peace and grace and fun. I don't often hear people talking about Heaven and saying "It's going to be a blast," but I think we should! It all comes together there, every last messy detail. And all the treats are fat free!

And so we sit and wait for a woman we love so dearly, to go home. To be healed. To have the body that she always dreamed of- without creaky knees and bad blood sugar, without cancer and blood clots, to be free. It hurts like hell, but is life. And to have the beauty, we too, must gasp through the pain.

She's laughing and smiling and saying "Hi" to so many people. Could it be that she is in between here and there? That she sees the signs saying "Welcome Sharon!" and knowing the crowd, "It's about damn time!" She jokes about her wings and them not working right yet.

We ordered Chinese food in on Friday night. Papa opened up his cookie and threw his fortune onto a plate of trash, without reading it. He turned back, thinking it might be significant today, and grabbed his fortune back out of the heap. It read: Time heals all wounds, Keep your chin up. We vowed to remember that in the coming days, in the rain or sunshine, but most likely, we will too, be singing in the rain.

Battle Wounds

2008-12-23T14:28:00.009-05:00

Ella and I during the month of "No Doctors!!" in July 2007.
A smile - even with the NG tube in. Below, this is her last day with the NG tube before G-tube surgery. On her left cheek, you can see some of the scarring from taping the tube for so long.

Winter is a time of so much thinking for me....actually, it is too much thinking. I overthink everything. My mind makes me crazy. That's why I like to stay busy. Busy running errands, working, preparing, reading, sleeping - anything but letting my crazy mind decide that the voicemail I just received from my Mom was to exile me from the family for being so late to dinner that one night. But on these winter days, where it is -3 degrees and my car doors are frozen shut, I can't help but be faced with my own head. Maybe this is what God intended for this time of year, anyway. In the spring and summer, God shows off what He has been preparing all winter and our job is to just enjoy and soak in all the Vitamin D we can handle and lay in the grass and feel sand between our toes. Our job is to enjoy the dirt while we plant flowers and wake up early with sun shining on to our faces. But the winter....the cold nasty winter, is a different story. There are no colors, except for white and gray. There is no light, except for what is reflected from the snow. There are slush-filled boots and sliding cars and plows and dragging kids by the sleeves of their puffy coats. And to avoid it all, we stay inside with slippers and more coffee than usual and just hope that Santa brings a present to make up for it all. But inside, their is a painful work being done, a work that no summer tan can hide. And it is in this time where God can bring forth all those nasty, useless, forgotten, unhealed parts and give them life again. It is a cruel and unusual form of punishment, in the midst of dry cracked skin and salt-stained pants that are laced in snow and ice. But, this is where the grace finds a place to leak in.

Nick and I braved the cold on the coldest night we ever remember, with our 2 toddlers, to get them home and in their own beds. It was so frigid that my jeans froze and my legs twitched each time the wind blew. Total time between door-to-car-to-door was approximately 8 minutes. We put the kids right to bed and tried to defrost with some scorching hot tea. The next morning, the kids were awake and we were chugging coffee when I noticed Ella's face. I thought she'd been burned or scratched by some huge siberian tiger, for her cheeks were covered in red. And after a swift moment of panic, I let her runaway and sat myself down on the couch to do some more thinking. The painful little lines on her face were from no ferocious feline, but rather were old scars that had resurfaced in the cold.

From Ella's birth till 8 months old, she had an NG Feeding Tube in her nose that gave her all the nutrition she needed. The most stressful moments of my life thus far have involved that damn tube. As she got older and stronger, she ripped it out of her nose, gagged herself all the way up and then ripped the paper tape off of her face with it. She would cry and scream and we would cry and scream. When we'd finally had enough, she'd pulled the tube out 4 times by noon and our new babysitter who was starting her first day, was never seen from again. I spent the next 2 days on the phone with doctors and surgeons trying to express to them that this was an emergency and that I couldn't wait another day. Within the week, the tube was out forever and a button was placed into her stomach, something that she couldn't pull out and all that was left were the scars.

But, on this cold winter night, we were reminded of the pain that we had felt 14 months before when battered little cheeks showed the pain they had known so well. I've always believed that you have to grieve things at different level - I guess this is our next level.

Nichole Nordeman says in her song 'Every Season,' "Even now in death you open doors for life to enter..." Maybe this is why winter is so inconveniently placed between 2 of the most beautiful times of year. We've got to go through the death- and deal - and if we've let Him do his job, the ice melts and our hearts beat again. Possibly with more vigor and more life. I don't know, just a thought.

"...and everything that's new has greatly surfaced. And what was frozen through is newly purposed."

2008-10-20T13:47:00.002-04:00

This heart of stone, be chiseled away
by unexpected acts of love
by hugs that touch the soul
by tears of pain and love and grief and joy and sadness and suffering and hope and forgiveness.
May your hands heal bodies and souls and minds - too numb to believe (for today).
May the rock barely beating in my chest flow again with life.
May gardens grow and flowers bloom where only dead roots and weeds thrive.
That I could become still in all the screams and hear you and know you are are there.
That I could feel your arms and breathe...
That I could just touch the hem - just one thread to touch and feel true grace.
And, that it would be enough

Still I will praise you...

2008-08-23T22:34:00.008-04:00

I am blinded right now by mascara that is dripping into my eyes. I just watched my favorite youtube video and I can't help but fall into the heart of Jesus when I watch it. There have been so many things happening lately and I am trying to decipher what God's move for me to make is. I have been seeing some cloudy areas much clearer and been faced with some tough emotional challenges. In the last 2 weeks, I have watched our cousin's face the darkest and rockiest storm of their life. He was burned and is paralyzed and can't have any more kids and is hallucinating and is feeling probably the most pain from being separated from his 3 year old daughter. I am not sure what to do or think, I'm not even sure what is "appropriate" to pray, but, what I know is this is a tough thing to be confronted with. I would be hesitant to go visit because I would be that person, with no emotional control, who would cry in front of him and make him feel worse. But, in all that emotion, I do have to say that I DO BELIEVE HE WILL BE HEALED. Like truly healed. Like as in walking like normal, dancing with his daughter and running to the phone. Every piece of me believes that to be true.

There was any interesting comment on his care page to his wife in response to her keeping the world updated with his progress. It said "Thanks for letting us know what is going on. It let's us heal, too." Wow. I wasn't sure we were allowed to say that or not, but, it is true. I don't know how to heal from this tragedy that has moved in on my cousin through marriage that lives 3 hours away. It is so interesting to see what God does in these times. How sometimes the afflicted ends up being the comforter and the most positive of all people involved. I told my Grandma this and she got it. She said she would much rather have cancer herself than to watch me go through it. That would kill her, she said, to watch me struggle with that. I remember the day that we found out she had cancer and how we got in a car accident that day and went to church on "low E." I was at the bottom of my barrel. My well was dry. I was emotionally devestated. Jesus always fills the void in those times. And, even when it doesn't magically go away, like my ADD brain wants it to, He always lets us know He is there. Even when we feel all alone. And the song that we sang, that I had never heard THAT WAY before, touched my heart as much as it would as if he would have been sitting next to me. The lyrics were this:

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back
I know You are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Chorus:
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth

And I'm not sure if most of it was sobbing or singing, but that was definitely something I would call "crying out" to God. I know he heard me. I know he was there. And tonight, I heard that song again, as they talked about fears and our Big God at church. And they sang some beautiful songs about those low places we find ourselves in, those valleys that feel familiar, like we've moved in and we are not sure where the end will be. WHEN IS MY MOVING DAY??? MY LEASE IS UP!!!! And tonight, we again, sang the song that told me just 2 years ago to never let go, through the storm and through the calm. And I thought about my Grandma and how I can't imagine life without her EVER - even if she lives to 125! And I thought about Ella and how I did not know if I could survive her life this far. And I thought about my soul that felt so worn, like it had been on the spin cycle for the last decade. And they said there is a light that is coming for the heart that holds on - AND STILL - that I should praise you. You should meet the woman behind the man who is laying in that hospital in Indy. Her name is Jill and she is like an angel or Mary #2 or Esther or Hannah. Basically, she is amazing. And as she sits with her husband and holds his hand and chooses to go through this battle with him, she is praising God everyday. She is waking up and blogging about God's goodness in her life and making lists about what she is thankful for. She is having a private praise & worship session with her Savior every night to protect her in her sleep. And I complained so much this week about how my thyroid is making me feel and how frizzy my hair is in this humidity and how Ella is running around making messes for me to clean up when I'm tired. AND STILL, she praises you.

I wanted to share some things with you today:
The Care Page that RD & Jill have to keep us updated on their happenings. I encourage you to leave them a message on their guest book with some encouraging words. They read every one.
http://www.caringbridge.org/visit/rdreid

That song that tells you to never let go, well, you can find that here. I'm not saying I love the video, but I think you will like the song. http://www.youtube.com/watch?v=SIAdgLR1ZGw

And that video which is my favorite thing on the internet right now. You should watch it and imagine Jesus doing that for you. http://www.youtube.com/watch?v=cyheJ480LYA

And here is a true story. It is a man they call "The Miracle Man" who was paralyzed and who learned to walk again. This is a very powerful story. http://www.youtube.com/watch?v=BukuUeDS5og

2008-07-06T23:17:00.004-04:00

I was looking for something online - very much not this, but found this. I don't think of Ella as being handicapped by any means, but this very much touched my heart. Share it with someone who wonders "why?"

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."
Finally he passes a name to an angel and smiles. "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?
That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today.
She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a miracle and know it.
I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.
She will never be alone.
I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.
"A mirror will suffice."

A praying people

2008-06-20T09:04:00.005-04:00

Yesterday was the first day of Ella's new therapy. We don't really have a lot of time for another time commitment on a Thursday afternoon, but then again, we can't afford not to have this one, either. About a month ago I was reading a pamphlet from the new yoga center down town. They were advertising all the programs available for kids - including "baby yoga," which my mom was taking Owen & Ella to the following week. I flipped the page over and saw an ad for therapeutic yoga for kids with feeding problems and emotional issues. This woman does gentle massage and stretching and cranial sacral therapy in a fun laid back way, while helping the child along the way. I was so happy and felt so strongly that this is what we were to do that I cried. I really did. And then I looked at the price tag: $90/hour - and I cried even more. It is the kind of thing that if it worked, we could put no price tag on what Ella would gain, but still, it was $90/hour. I was mad and annoyed and sad and still crying when I remembered: $90/hour therapy saved my life (it was a little different kind). I did some investigating and found out that she is a First Steps therapist as well. Hhhhmmm. So, I called my service coordinator, Pam, and within and hour, we had lined up that same therapist to come do therapy at our house, for a fraction of what it had cost. Pam told Stacy, our new therapist, "This mom knows how to work the system. She wants you 4x a month." Done. It was awesome. I felt like super woman for about 2 minutes because I worked the system and got what we needed and was gonna pay hardly anything for it. But by then, we were at Barnes & Noble and I couldn't see either of my kids, but heard books dropping, and super woman put her normal clothes back on and frantically cleaned up a mess.

And so we started our new therapy yesterday. I was running late coming back from vision therapy in St. Joe, Michigan and Nick was supposed to be here doing dishes and sweeping floors, but he was late too. So, 10 minutes before Stacy arrived, we were frantic and I was pacing and pouting and tense. But, I can turn it on real fast, fortunately. She first wanted to demonstrate on me and immediately said "Wow, you're really tense. Stressful day?" I was found out. I can't fool a massage therapist, can I?

Cranial Sacral Therapy is --- well, let me just led Wikipedia do what they do best: A craniosacral therapy session involves the therapist placing their hands on the patient, which they state allows them to tune into what they call the craniosacral system[1]. By gently working with the spine, the skull and its cranial sutures, diaphragms, and fascia, the restrictions of nerve passages are said to be eased, the movement of CSF through the spinal cord can be optimized, and misaligned bones are said to be restored to their proper position. Craniosacral therapists use the therapy to treat mental stress, neck and back pain, migraines, TMJ Syndrome, and for chronic pain conditions such as fibromyalgia.

And so, they lay hands on the patient. And the pressure is very light, almost too light, but after a minute or so, the area that you are touching loosens up and feels different. There is fluid that flows through your spinal cord that is called craniosacral fluid. It often gets blocked up and can be relieved with some gentle pressure and some good intentions. Or, as she said, if you are praying people, you pray for healing in those areas and put everything you've got into it. God does his thing, I do my thing and the fluid will move and relieve some tension in the body. Stacy quickly found that Ella's chest, upper back, ears, mouth, neck, g-tube scar and belly button were all places that needed work. Those are all of the areas she has experienced some trauma.

And although she has improved in so many areas, I know she is still traumatized. Nick carried Ella into the hospital room to see my grandma on Thursday and she started to shake. A moment later when the nurse walked in, she started crying and yelling at her. I didn't believe she had forgot, but I didn't know how much she knew. That is very upsetting to me. Before she was born, I had done some studying of babies with birth trauma and NICU trauma and it did help when we lived in the hospital and I knew some ways to make her feel safe and to make it less traumatic. But, still, I knew. I couldn't help but worry about her emotional health day and night. And we have been doing so many therapies and exercises and praying and we have seen many improvements. But, I have still felt like there was a missing piece: Someone to cater to her emotional needs (and maybe even mine.) Stacy explained how to do the belly button therapy, with some gentle touching and some big prayers. She explained that if Ella is sleeping, she might quickly sit up and scream - not because its painful (it is light touch), but because it does what it is supposed to do: releases the emotions. She repeated to me what I should say to her when that happens. "It is ok. You are safe now. Mommy has you and won't leave you. All that bad stuff is over and you are safe and loved and we will protect you." And I started to cry, as if God was speaking that right to me. And I wanted to hug her and say "Will it really be ok? Is it really all over?" But, instead, I hardened my heart and pulled it together and thought I could save it for blogging later - a place where I feel free and almost always cry. For the rest of our session, she said those exact words to us 2 more times. And each time, I cried. And I again saw how Ella will be healed through therapy, and I might get a little healing as well.

It started with a chair.

2008-06-08T10:09:00.004-04:00

I am sitting at our counter, with a cup of fresh coffee in hand and some nice, calm, uplifting, soul clearing music on. I am watching Ella, with a tired ponytail on top of her head, stuff food into her little mouth. Her eyes are wandering, because she doesn't have glasses on yet. I wonder how much she can see me from back here - so, I smile. She smiles back. She is joyous today - even more than normal. You see, for the first time in her short life, Ella drank out of a straw a few minutes ago. And to you, I know that has little significance, as Owen drank from a straw successfully at 6 months old. And here we are, 15 months old and she just FINALLY figured it out. It is just a straw. It is pink and bends a quarter of the way down. It is cut shorter, to make it easier. It sits in a stubby yellow cup with a worn yellow lid. It is covered in yogurt and banana goop. It holds some weak juice mixture that is nearly tasteless. But, it worked. We sit with therapists 4x per week and talk about this and that and work on this, that and the other. We love them and they love us. They have all fallen in love with Ella, just as most people do. They are constantly in awe of how she catches up, her newest dance moves, her new sound, how fast she recovers, etc. I would hate to be the parent of one of the kids who doesn't come along as fast as Ella has - this has been hard enough. But, as far as feeding, we are at a stand still. She has mastered yogurt and jarred food. She is eager to stuff finger foods in her mouth. She snatches "adult" food of our plates and devours it down to to the smallest of crumbs that we can't believe she can even see. Right now, she is sucking on a mesh bag filled with banana. These particular "feeding accessories" should have a blow up tub that comes with them. There is no way to slurp a mashed up banana and come out clean. Anyway, the food consumption is pretty average for her age. (I never thought I'd be excited about someone calling my child 'average') But, it is the liquids that keep us dependent on a button, so carefully placed in her belly, that connects to a short tube, which holds a syringe where we pour the milk. I want to get rid of that damn tube. Yes, thats right, I said damn. (Please do not comment on the use of that word). I want her to taste what goes in and decide for herself that baby formula, even the expensive organic kind, tastes like dog food. I want her to be able to take medicine by mouth and not mind being sick so much after she tastes the yummy pink kind. I want to forget her tube at home and know its not an emergency and she will be able to drink some other way. We have tried 50 sippy cups, fat straws, skinny straws, cups, bottles, spoons, etc. I talk to other mom's of kids with G-tubes about what to try and what worked for them. We make different potions of yogurts and milk and juice and put it in plastic honey bears with aquarium tubing. Our therapists order expensive things online that we try for a week or two, but we just can't get her to take in the liquids and get them down to wear they want to go. Months ago, I bought a box of straws at the request of the speech therapist. We cut some of them short and started using them as droppers into her mouth. It is a very slow and frustrating way to feed a baby, trust me. It would have taken 2 hours to do one feeding!!! So, we try that from time to time, always prepared for her to suck from the dropper, where we would then put the straw in the cup and hope she reenacts it and gets a big gulp. But, she never did. And this morning, as I'm making coffee and toast and tiptoeing around to keep Owen asleep, I can tell Ella's mouth is dry from all of her Cheerios. I looked in our baby cup drawer, but there was nothing clean for her. And as I looked at my full sink of dirty dishes, I thought maybe we could try the straw today. And I didn't cut it and I put it in this strange juice and I felt a cold sensation on my fingers, as I held the straw up to her mouth. The juice was going up and down in the straw and her short little cup was filled with a yogurt-Cheerio mix. But then, she smiled such a big smile that she couldn't keep in and a whole lot of liquid spilled out. I couldn't believe what I was seeing. She had to have gotten some juice in her mouth to spit it out, right? After a minute or so, she demanded a refill, which I eagerly gave her. And by the end of it, she had consumed about 3 ounces. 3 OUNCES!!!!! That is half way to eliminating 1 tube feeding a day. That is a big step to a big goal. And maybe it is a fluke, which we have had before with other new cups and fads, but this required a skill that she wasn't able to master without going through the pain of surgery and the greater pain of time. And so, we will pray and try again at lunch and see what this kid can do.

Barely hanging on

2008-06-02T11:14:00.004-04:00

Today is one of those days where I'm just trying to hang on. It is one of those days where I'm counting down the hours till bed time and praying for an angel to stop by and offer to babysit. By 10 am, we had yogurt everywhere and no more coffee. My "Plan B" was to get Nick home as soon as possible so I can lock my self in my room for a bit and get composed. But, when I tried to call him, I realized my phone was broken. I feel stranded on a desert island.

Lately, whenever I am freaking out and have Nick to rescue me, I go lay in my bed. My dream is of course to take a nap, which cannot happen for about 16.5 more years. I wrap myself in my big down comforter and lay on my green organic cotton pillowcases (thanks, michelle) and shut up. It feels a lot like what I feel a cloud would feel like. I often close my eyes and stop moving and drown out the sound. I sometimes pray, I sometimes count to 10, I sometimes just try to get still. I am not necessarily even trying to hear God, but just trying to feel less of me and more of Him. Sometimes it really works.

I think the first time I "swaddled" myself I was just trying not to scream so my children couldn't hear it.

Babies, especially babies like Ella, love to feel safe. They were cuddled and squished so nicely in that warm cozy womb for so long and then BAM - hello big, bright, loud, scary world. I was never too great at swaddling. My kids could always "bust out" in a matter of seconds. Duct tape would have probably helped, but I figured that would be a good reason to be out of the running for "Parent of the Year" award. Nick was much better than me at wrapping the perfect swaddle. For some reason, kids feel safe and loved when there Dad wraps them up and holds them tight.

I'm drinking coffee from a teacup that says "May the God of hope fill you will all joy and peace. Romans 15:13." It is the last drops of a pot that is empty. It is cold and has soy milk in it and I need a new pot, but, some days, even little things feel hard.

My phone just rang. Yes, the broken phone. The phone that I couldn't get to do a darned thing this morning, rang. It was Nick. Nick, my strong and brave husband that wants to give us the world. He said he was just calling to tell me that he loved me so much and that we were going to have a great life. He said he will do whatever it takes to make sure we have the life that we dreamed of and that God promised. He said today is going to be a great day and that everything will be OK. He had no idea what had just gone on here, in my head. I started to cry. He told me he would see me in a minute. He was just calling to share a little joy and a little peace.

Healed With Love

2008-05-29T23:25:00.003-04:00

Ella's senior picture. (actually, she was eating a piece of caramel corn.)

I worry that she will remember. I think of the answers I will have to give to the questions she has about her life. I wonder if she will feel like we made the right choices and did the right things. I look at her sometimes and say “Do you remember? Do you remember the surgeon in his scrubs and the tubes and wires and all the times they pricked your foot? Do you remember, my little Ella?”

I am trying to figure out the difference between the person who is defined by tragedy and the person who can leave their tragedy in the past. Some people are victims forever and some people become successful and inspiring people with a message. What is the thing that lies between that makes their lives turn out so different? What will it take for Ella? What will it be for me?

I was so worried while we were spending Ella’s first weeks of life in the NICU about her feet. The nurses took her blood sugar every two hours for days! Her foot was so swollen and bruised from the IV, that they had to switch it to the other foot, which quickly looked just as bad. Anytime we touched her cute little toes, she would scream and cry and kick. I thought about how she would miss out on one of life’s greatest pleasures because of this pain: pedicures. How I prayed that God could heal her feet and take away the fear and memories.

And I had a hard time seeing how he could do it.

But, he did. And we spent a year trying to heal her with love and touch. I touched her feet with gentleness and smiles throughout her days. We overwhelmed her toes with kisses and tickles. We turned everything into a game where there was no pain or fear, only laughing and only love. And when I held her close, I would cup her feet in my hands and pull them close so she always knew they were safe. And with time, she turned into a little girl who finds pleasure in playing with and chewing on her toes. It’s almost as if she doesn’t remember the pain.

I was spending some time trying to understand all this the other day when I remembered The Healer. Jesus heals rapidly, where things don’t make sense medically or emotionally because of how fast it happened. He also does this other kind of healing and it is something that most people won’t notice and say “Wow, that was a miracle!” This kind of healing is slow in coming. It can be overwhelming and painful. This healing, the one that most of us have known, this looks a lot like love.

A Green Lamp

2008-03-04T13:08:00.004-05:00

So, I bought this new lamp. I love it. It is green with a crackly glaze. It has a simple white shade. I saw it and immediately knew where I would put it: on the new end table I recently bought. I thought it would do a lot for my boring and under-decorated living room. It may have been the missing piece.

I found this book in the clearance books at church on Sunday. It is a story about a woman who was date raped and her journey back to feeling like a human again. It is really good. Anyway, she was talking about pain and anger and how those are real feelings that everyone needs to go through and feel and sit in and hate and wait for Jesus to rescue us out of there. It is dirty and smelly and it can be a long time there, but when you go through that, one day you see that He was sitting there with you all of the time. Crying when you were crying, scared when you were scared. Never alone in that place.

I'm not sure how much I have actually grieved over Ella. I went through the whole depression stage and I think that I thought about grief - I may have even knocked on its door, but I never went in. I think I would need a nanny for that. I would have to take a weeks vacation. I don't even get an hour to myself without children a day. How could I ever have a chance to grieve?

So, I bought this lamp and after I got it home, I realized it wasn't even a lamp. It was what I was hoping was the missing piece to my life and my sadness and my problems. But, it couldn't do that because it was just a lamp. A pretty lamp that was 50%, but still, just a lamp. No matter how perfect it looks on my perfect little table, I am no different, no better, no happier, no more emotionally stable at the end of the day.

I only cried at the hospital once while we were there. It was that point where every good parent cries: as their child is being carried off to the O.R. and they are being escorted to the waiting room to just wait. I waited till no one could see me but Nick and I cried hard - for about 8 seconds. I wanted to make sure I stopped before my Mom saw me or anyone else who might make me let go. I made sure I didn't cry again during our stay - at this point, if they started, they might not stop. So, I make them stop before they start and again go on through my days, never feeling or hurting or stopping or grieving - with a green lamp that sits on a table and does nothing more than turn on and off.

I forgot to love you.

2008-02-01T16:59:00.000-05:00

I forgot to love you, but I never forgot to judge you.
I told you I'd pray for you, but I never sat down to pray with you.
I showed you where the doors to the church were, but I never walked with you through them.
I told you what you were doing wrong, but never showed what was right.
I asked who your parents are, but never told you whose child you were.
I gave you a label, but never really knew your name.
I noticed your habits, but never wanted to know your heart.
and
now
I
am
the
one
who is unloved and lonely and wrong and labeled and unknown
all because I always had time to judge you,
but always forgot to love you.

Make 'em tough

2008-01-29T14:17:00.001-05:00

Owen is a child that is so ahead of his time. He could feed a baby through a feeding tube at age 2. He knows his city and state he lives in and also which state he was "made" in. His favorite song is about the caste system in India. He draws pictures of Desmond Tutu and Yo Yo Ma. We think he is truly incredible.

Today he is using a small cloth tape measure and measuring everything he needs to know an instant size on. We go through this every few weeks when Ella is measured by her nutritionist to keep a good tab on her size. But, the thing is small and it gets lost often so for a while we do not know the status on many a thing.

But, those big blue eyes spotted the tape measure under the couch today and found it. "I measure everything." And away he goes.

Ella was the first to be measured. "How big is she, Owen?" Nick asked. "Big," said Owen, "and tough."

And me, I wondered. Owen put the measuring tape up to my leg and immediately he knew: I was tough too.

How much does he know? How much has he heard? I immediately began thinking about how smart and observant and curious he was and questioned his innocence, as I often do.

But, this wasn't about that.

Within minutes, all 4 of us were officially put to the test and we all had the same height: tough.

We couldn't have planned him better if we would have picked him out ourself. Owen renews our hope for today and reminds us that in the weakness that seems to overwhelm, I am, we are, incredibly and undeniably tough.

Sleeping baby

2008-01-29T12:25:00.001-05:00

I have a sleeping baby in my bed right now. She has never slept till noon in her life! I keep going in checking on her to make sure she is breathing and to make sure she didn't crawl away to go play with toys when I wasn't looking.

I just went and checked again. Breathing? Check. Still in bed asleep? Check.

Last night we were traveling late and out of town when we pulled into Meijer to stop and buy some diapers. Ella started crying and within a few minutes was nearly hysterical. As Nick got her out of the car, he found her projectile vomiting in her seat - all 5 ounces that she had just eaten. It was disgusting and stressful and within a minute, I was flooded with more emotion than my body could handle.

We had to do this awkward naked baby clean-up in a dirty men's bathroom with hand dryers and wads of toilet paper. By the time she was clean and naked, she was back to her cheery good-natured self. But, not so much me.

I didn't cry during this fiasco. I have learned this very unhealthy method of dealing with the fear and pain I feel whenever we have an Ella episode: it's called "not feeling." How profound.

I don't know what to do with all that is before me some days. As of late, she can throw up between 1-5 times a day. I've been saying it's because she has had a cold for the last two months and a hole in her mouth and that together, it's hard to keep things down. (which is true). But, a small part of me is scared that something else is wrong and that it would be too much for my overflowing plate to worry and explore something else.

Each time she loses all that she just ate, I count calories. We are at such a critical point with her weight where she is too small for the doctors to be comfortable with and every drop matters. She threw up 154 calories last night in the Meijer parking lot. That is 154 calories that sets us back and puts the question of her surgery and general health back on the table. Those are not questions we can be having anymore.

And so, I let me dear baby sleep like a teenager today. I walk around with all this feeling wanting so bad to explode out of me and let me be free, but then who would take care of my children? Who would take care of me? She must be exhausted. I sometimes forget how it must make my sweet Ella feel to go through all these things herself. How I wish God would take all the pain we all feel away.

Until then, sleep, baby, sleep.

All things made new

2008-01-20T12:59:00.002-05:00

It is half way through January of 2008. I was so looking forward to getting out of 2007 to have a fresh start. I should have known that it was not the official start of a new year which made things new, but what I would change to make things new. There are many things with Ella that are not totally taken care of yet. Compared to deafness and blindness, they are nothing. But, they are where we are and have become magnified and huge and I spend much of my day thinking of her tilt and food coming out of her nose and the cold that she has had for 2 months. It's funny how that when problems come and go and when they go...a new one comes in to fill in the space the other one left. Even if it is not as big as the last one, it doesn't matter because it is what is present and feels real today.

We scheduled Ella's surgery - the surgery we have been waiting for since she was a day old and found out about the gaping hole within her mouth. At the time, there was nothing more devestating than that space in her body that needed to be filled. But, it soon had competition with her hearing and her vision and her eating and the cleft in her palate, became an incidental in our life. Still, it must be fixed in order for her to talk right and eat comfortably and laugh hysterically without reservation. And so on February 25, the hole will be closed. The surgery will last between 2 and 3 hours and when she comes out, with stitches and all, her mouth will be as it was always supposed to be.

Ella's physical therapist, Miriam, asked what this would mean for us. She thinks Ella is amazing and right on track with everything she should be doing. So, what does the surgery make different? First of all, she will learn to talk and make sounds that currently can't be made because she can't create pressure in her mouth. Second of all, she will be able to eat confidently and food will no longer come out of her nose when she tries to move it from the front of her mouth to the back. She will be able to make suction and suck from a bottle or a straw and actually get something out! She will swallow and begin to truly enjoy food. Lastly, it is a sign of so much for our future.

At first we thought this horrible diagnosis of Pierre Robin Sequence was going to destroy our life - seriously. But, like many ignorant people have said, "If you are going to have a birth defect, this is the one to have." Oh yea? Obviously they have never had a child, let alone a child that didn't come out exactly as expected. We are very fortunate that most, if not all, of the issues we are dealing with today will not be around tomorrow.

Ella's palate will be totally healed within a week. Our surgeon said it is one of the most amazing things to watch a child's mouth heal, after all they have been through, so quickly and to see how their recovery is much faster than that of an adult. It's a true testimony of how your past is not your future. How what was yesterday is not today. How all things, in time, are made new.

To make a child...

2008-01-09T13:26:00.001-05:00

Me and my most loyal friend.

My sweet Owen asked me yesterday, "Why does Ella have no mouth?" No mouth? I remembered him saying something to this effect in the past few weeks, but I didn't understand. "Ella have no mouth. Eat baba in feeding tube." My initial response was to laugh: How funny to think she has no mouth! I realized what an abnormal situation we have and how most kids don't grow up wondering if their siblings have mouths. "Owen, Ella DOES have a mouth. But, when she was a baby she wasn't strong enough to eat like you, so we had to get her a tube so she could get big and strong. Then we went to the doctor and she got a g-tube put into her belly."

"I remember that."
"Remember what," I asked.
"I remember when Ella got a g-tube in her belly. Go to hospital. Ella get ouchy."

Oh, how I started to cry when I saw how sad he was. I didn't want him to know that she was in pain or that we were/are in pain. I wanted him to think that everything was OK and normal and that this is how everyone's life is. I wanted him to not be sad. I worry so much about how they will feel as they are older. Will Owen feel weird in school because his childhood is so different? Will Ella ever tell anyone that at one point there was a whole in her mouth so big that she could push food right out of her nose? Will the kids laugh? Will she be too strange to be their friend? Will they love the people that no one else will? Will they see past the skin and see into the heart? Will they have eyes that look like Jesus?

When I was younger, I remember feeling such a pull to the people who needed love and who were different, but wanted so desperately to be accepted and popular. Oh, how I've wasted so much of my life trying to be both. I couldn't be both.

Owen got a Veggie Tales video for Christmas. Bob & Larry read answered a question from a little girl that said "I want to be friends with someone and know God wants me to be friends with them to, but they are different from me and I know I will lose my friends if I am friends with them. What should I do?" They told the girl, who is way ahead of her time, that if she trusted God that she should make the new friend and God would bring her new friends (that would of course be better) than the old friends. God would be happy. She would be happier, too.

As a parent, I am torn between making my kid feel comfortable and loved at school, as opposed to having a harder time in school because they don't want to conform. But, none of those people I tried to impress stood up next to me at my wedding, or at Ella's bedside as we tried to figure out what to do. None of those people said they would pray diligently for my Grandma when we found out she was sick. And so, I guess I know what I pray for. I pray for children who love Jesus more than popularity. I pray for children who see hurting hearts. I pray for children who see beauty in the differences they come across. I pray for children who trust that God will take care of them as they take care of others. I pray for children who have as good of friends as I do.

Almost made it through 2007

2007-12-17T10:54:00.002-05:00

This picture was taken exactly 1 year ago.

At the beginning of the year, we would never have known what was in store for us in the coming months. We didn't think that anything about our new babies life would be anything but perfect. And I think back to the time where I felt like I was dead, or dying, or maybe both and it wasn't that long ago.

I guess all this to say that Ella got her pictures taken last week. She was dressed up in this little purple fairy costume that matched her glasses. She was cute and went right into character when she put them on. And it wasn't until we looked at the proofs online yesterday that I realized what those pictures really were: She made it. It is December and she is alive and well. No, the doctors never told me she would die, but when they are saying words like "aspirated pneumonia" and "airway obstruction" my imagination can work on its own. Maybe in the back of my mind I didn't think she could come this far.....or maybe it was that I didn't think I could come this far. But, here we are. And I look forward to spring next year more than ever because what was dead is made new. I feel like 2008 is full of promises and hope for us. Not like every year is because we do control our own destiny in so many ways, but differently because we have learned so much to be grateful for and appreciate a new start.

2008? Bring it on.

Thankful

2007-11-24T18:30:00.001-05:00

I didn't think too much about thankfulness this year. Believe me, I am a very thankful person. I have many reasons this year to spend time dwelling on the reasons to be thankful. Thanksgiving was a day where I was on the verge of tears all day. Yes, I am on my period, so I can blame part of it on that. Yes, my brother moved away this week. Yes, i'm sleep deprived. Yes, Ella still has some challenges she's is going through. Yes, my grandma still has cancer. I didn't stop and think or feel. I did not feel like socially I could afford to have an "off day" emotionally. I can't say "Happy thanksgiving. I loved the pumpkin pie." and break down in tears, because that is where I was headed. It is such a tragedy about my emotions and feelings right now. Why can't I just be? Why can't I just let my true colors show? I stand behind my belief that no one really wants to know because it would be too painful for them, too. Nick knows, but we need to keep living at a somewhat level of function, so this does not come up in conversation daily at this point. I am trying to figure out the point when this will all go away. What is the milestone Ella must hit for me to stop crying? What does she need to be eating and in what way? My friend Laura, who has a toddler with Pierre Robin, told me that she and her husband were talking about us and how they remember how hard the first year was. They have come along way since then and would never again want to be in the place where we are at right now. She told me that eventually, I will see a light up ahead. But, I get so scared. I'm so scared she will never be able to eat. I am so scared that she will have a feeding tube for years. I am so scared that she will be worried about all the things that once happened in her early life. I am so scared that she will feel different from other kids. I am so scared that she will look different from other kids and they will let her know. I am so scared that she will have eating disorders. Ok, finally; here come the tears. Let the river flow. I've been thinking alot about birth experiences lately. I had a great one. I actually had 2 great experiences. After Owen was born, people brought us food and came to visit. They wanted to stay a while and hold the baby. They brought gift after gift and gave their time to us so I could heal- physically and mentally. And it worked. But this time, people came with food, but they didn't stay to see it eaten or hold the baby. They brought presents, but did not make eye contact. I've been thinking lately about redoing the postpartum experience. When someone has a traumatic birth experience, they can have a rebirth, where they lay in a tub of warm water with their baby on their chest and relax in a stress-free and worry-free and noise-free environment. A lot of times, that experience will bring in milk for a mother who had none. Most times, both mom and baby feel healing. So, how do I do this with the postpartum? I don't have any desire to have people bringing food and presents. I just want to heal. I look at my mother-of-2 body and feel like i'm looking at a 3 day post partum body. I don't look normal. I actually am in the same shape as I was leaving the hospital 8 months ago. I wonder if something that was supposed to happen stopped. Where in the process did I leave off? Can I ever start over? Pick up where I left off? Or is what I'm asking for divine intervention; not my doing, but His? I should start inviting God more into my day. I think about him alot, but thinking about the dishes doesn't make them clean. Where do I go from here? What is next for me?

Sean left for San Francisco

2007-11-24T18:28:00.000-05:00

My brother, Sean, moved to San Francisco today. I am overwhelmed with how much harder it is that I thought. In my life, I’ve been the one doing most of the leaving. I’ve been the one who goes off on an adventure and doesn’t look back at the people I leave behind.
He has been here for so much. He literally hitched a freight train and traveled across the country to be here for Owen’s birth – and he never left! After Hurricane Katrina, he went and gave his hands and time to help wherever he could – twice! But, he came back. Owen has fallen in love with his Uncle Sean and really, so have I. It is so different this time – to have experienced life and grown – and to share that. And then Ella came and Sean was still here. I never saw him cry over the pain she has felt, but I see how he looks at her and how his love for her has grown.
No one knows how hard these months have been for me because I haven’t told anyone, really. But, I think Sean knows. Through the little that was spoken and the lot that was unspoken, he knows. And I feel so torn about my secret leaving and being unknown again.
I watched The Parent Trap starring Lindsay Lohan yesterday and sobbed through that kids movie. I knew I was going to be in trouble today.
As we were hugging good-bye and crying, I told Sean it was time; he needs wide open spaces. And it is true, I just wish I was going with him.

There's no crying in baseball

2007-11-14T14:39:00.000-05:00

I have a rule: no crying in front of therapists. I did it once and the therapist looked uncomfortable. It's a hard standard to stick with because I talk about the hardest things in my whole life with them and I flood with emotion. It's a wonder how I can keep all that inside. Even though they strive for professionalism, I think they care about us more than they could say. There are rules in therapyville about not kissing the babies and watching affection. But, they too, love Ella. They want her to thrive and grow and get better any way she can. When we hurt, they hurt and want to hold her close. When we have joy, they want to cover her with kisses. I wonder what would happen progress-wise if therapists were allowed to get "emotionally involved". Not to the point where they would cross boundaries, get in trouble, etc. But, what would happen if we let them do their therapies and didn't have to think about showing too much love? Would the babies heal faster? Grow stronger? Love more people?

Today was one of those days I had to remind myself that we don't cry in front of therapists. But, the tragic part about that is, who else would understand?

"Ella Amazing" - featured in MOPS Newsletter

2007-11-14T14:36:00.001-05:00

Ella Grace was a miracle from the beginning. I wasn’t supposed to be able to get pregnant since baby #1 sent my hormones into chaos. My thyroid decided to take some time off and thus, I was an exhausted new Mom. My doctors agreed: getting pregnant again would be a challenge. That was devastating news, but with a two-month old baby and a nap nowhere in sight, I decided to worry about that later.
Later came quickly. As I took another mid-afternoon rest with my baby, Owen, I wondered why I was so tired. The last time I needed a nap every afternoon was…. OH CRAP. I was pregnant again and had a six month old baby. We spent the next hour laughing and crying. This was a miracle, but I would have appreciated a little more of a “spaced-out” miracle.
And so became another unorthodox journey for us. Nick and I always did things that people talked about. We were engaged for only three months before we tied the knot – not because I was pregnant, but believe in condensing time frames. We moved to California with no jobs and nowhere to live. We quit our stable jobs to start a business and moved to Indiana all while being 8 months pregnant. And just when people started to think we were boring, we were joining the “two under two” club. Actually, forget that, we were in the “two under 16 months” club and my membership package did not include the spa treatment.
My first and second ultrasounds were too early to get a clear due date. But, one thing was certain: this baby was hanging out a little too low in my uterus. My midwife wanted me to be prepared for bleeding. Bleeding? There was a good chance that my body couldn’t “maintain” the pregnancy. And so, we just went on as if all was well. And it was.
When Ella made her grand entrance on February 22 of this year, she wasted no time. Seventy-five minutes after my water broke she was here with a full head of dark hair and olive. She was prettier than I ever imagined. Still, I felt like something was wrong. She had 10 fingers and 10 toes, but she cried a lot and would not breastfeed. Isn’t it funny how a mother always knows?
“Your baby has something called a cleft palate.” A what? I had heard of a cleft lip, which she obviously did not have, but what was this? “She also has something called Pierre Robin Sequence.” Within a few hours, we met with an Occupational Therapist who would be helping us feed Ella, a Respiratory Therapist who trained us on how to use an Apnea Monitor and signed us up for CPR classes. I heard nothing.
A cleft palate is a hole in the roof of the mouth. Ella’s cleft is in her soft palate, which is about as high and far back as you can reach with your tongue. Pierre Robin Sequence is a series of “birth defects” that include a cleft palate, small jaw, small chin and a tongue that falls back and blocks the airways. I decided I should find this “Pierre” guy and kick his you-know-what.
And so our journey began with therapists, feeding tubes, blocked airways, swallow studies, surgeons and fear. There was no hope in our home. This was not what we bargained for or planned. If we weren’t crying, we were fighting. And when the fighting stopped, the pain was deafening. We weren’t sleeping or eating well. We felt horrible. Each week we received more bad news. “She could be deaf. She will be blind. She will be developmentally delayed. “ It was too much.
We received some bad news about Ella’s eyes from a Pediatric Ophthalmologist when she was three months old. The optic nerve in her right eye stopped developing before birth. Optic Nerve Hypoplasia, he called it. Ok, we said. What do we do? Therapy? Glasses? Patching? Medicine? Surgery? Whatever it is, we will do it; let’s make this nerve grow! What we did not understand was this something that couldn’t be changed. The developing had to be done before those beautiful blue eyes left the womb. There was no humanly possible way that Ella could see out of that eye. Our baby was legally blind.
And as we walked to the car, my husband sobbing and carrying our sweet baby who had already gone through so much, I couldn’t help but feel peace. I remember thinking weeks ago: God is going to heal her eyes. At the time, I didn’t know there was anything to heal. What is humanly impossible to man, well, felt like a big fat challenge to God. I was scared of believing he could to this, but what was the alternative? Blindness? Never being able to read? Never learning to drive? Never getting to see how beautiful the flowers are in the early spring and how rich the leaves are in late September? Would Ella never see the beauty of her own eyes or recognize my face? And so, I chose to believe. I spent the next two weeks praying and reading stories of ALL of her “defects” being healed. Anytime we held her, we prayed. Anytime she slept, we prayed. I finally started to believe that God could do this, even though the world was screaming, “HE CAN’T.”
I recently read that we shrink the size of God to the size of our biggest problem. That doesn’t allow much room for the impossible, does it? But, He is so gracious and allows some room for our own faith to be lacking and to grow. He never disappoints, never breaks a promise and never leaves us to sit alone in our pain.
And so we asked for help. We had our friends come over to pray over this sweet baby who had already gone through so much. The crowd agreed that God was performing a miracle and the final word would be the doctor’s confirmation.
About a month later, we headed off to the doctor again. He couldn’t believe what he saw. “I must have made a mistake.” We knew it was no mistake. “I don’t understand this, but if her nerve has grown this much already, it might just keep on growing. I think she will be fine.” (We got a second opinion and the second doctor confirmed.) There was so much freedom in those words.
We decided it was time to slow down and get to know our new life and new daughter. And so we took July off from doctors and surgeons and swallow studies. We started to bond with her as a child, not as a tragedy. How fast our love grew! At 5 months, she finally started to smile and laugh. And each time she did, we cried with joy.
We spent the rest of the summer enjoying our life. Ella began to open our eyes to all that was worth living for in our world. Have you noticed the wind lately? It’s the same wind that has been around since we were kids, but have you stood outside and not worried about the state of your hair and let the wind blow across your cheeks? I hadn’t noticed it for years, but Ella did. She shuts her eyes and leans back her head and sighs – every time. And did you know there was sand at the beach? For so many years I was only worried about my tan and sucking in my stomach, but Ella showed me there was sand. And if you close your eyes, you can rub your feet across hot sand and you may even be tricked into thinking you are getting a foot massage! She has showed me how to “just be.” How I long to lie in bed and just relax and not think of all the things I’m not doing, but to just be here now. I love to watch her lying in her bed, just rolling around and smiling. She doesn’t worry about tomorrow, or the rest of today, she just is happy being Ella Grace, cutest baby of all time.
And that is not the whole story. Her first two weeks of life were spent in the Critical Care Unit in the NICU on IV fluids and an NG feeding tube. She failed six hearing tests, only to pass at seven months, finally. She has Torticollis and Strabismus, both which she receives treatment for. She has therapy three times per week, monthly swallow studies, x-rays, two surgeries down and one to go. She wears tiny purple glasses and eats from a tube in her belly. But, those things don’t define her anymore. She is a spunky, sixteen pound, brown-haired, blue-eyed beauty with a spirit that will make you smile. She has kicked every prognosis she was ever given in the rear end! We are so blessed that time, therapy and surgery should take care of all of her problems.
As for me, I have seen the person I truly am through this experience. I am not just an overtired, overweight, emotional wreck of a person. I am strong – strong enough to stand up to the most famous of doctors, strong enough to ask for help, strong enough to tube feed a baby every three hours around the clock, strong enough to be weak sometimes.
I think as wives and moms, we despise that dumb Proverbs 31 woman because she is everything we are not. She always looks good and always makes dinner and always makes her husband proud. A day of wearing sweats, frozen pizza and a messy house isn’t what we would consider an accomplishment! That woman is so misunderstood! When the scripture says, “She rises when it is still night,” it is not saying “She gets up at 4:30 a.m. to work out and make sandwiches for her family and put on lipstick.” The message there is that even when things were hard and life was dark and sad, she kept going. She didn’t quit on life or herself. She did what she didn’t always feel like doing because it was what needed to be done. She is strong. You are strong. I am strong. Ella is strong. God can use our weak times and our tragedies and turn them into stepping stones to the rest of our lives.
I received an email recently from my sister-in-law about Ella. She let me know that during the latest surgery, they had been praying. She continued to let me know that their daughter Lucy couldn’t wait to meet Ella and had renamed her “Ella Amazing.”
Tears poured from my eyes as I read those words. People always say I am lucky that to have such a happy baby in these circumstances. It was not luck. Ella has experienced the worst – being poked, examined, discouraged, stared at and scared– and now she knows what is the best. She is grateful for sunny days and gusts of wind and teething biscuits and warm baths. She loves the softness of her big brother’s hair and the warmth of her daddy’s shoulder. Ella loves life and has taught us to love it too. She truly is “Ella Amazing” and I am so grateful for her.

We give thanks to you with gratitude for lessons learned in how to trust in you

2007-08-25T17:57:00.001-04:00

I had a thought today: If God came to me today and said "We can start over. Ella will be born - same personality and looks - but without all the pain and suffering. There will be nothing wrong with her body." Would I take the trade? Would I start over and erase the pain that has nearly killed us?

I asked Nick a question today: If God came to you and said "We can start over. Ella will be born - same personality and looks - but without all the pain and suffering. There will be nothing wrong with her body. Would you take the trade?"

And without hesitating, my husband loved us more than I'd ever felt before. He said "No way. We are better people now. We are changed from going through all this. We are better parents and better leaders and better people. I would never change any of it."

I guess Ella wouldnt be Ella without this experience. I guess she might not be such a warrior and so full of joy without an experience to contrast her life with. She will have such a story to tell and she will always be a testimony of God's healing.

I really respect Nick for saying and believing what he did. It is not as if we are through this. It is not as if all the surgeries are done and the doctors are off our backs. It's not as if she is totally healed and cured and living life as normal. And for him to say that in the midst of our greatest pian, he wouldn't change a thing...

I am glad he is becoming such a strong man. I wouldn't trade Ella for the world - but to live life without feeding tubes and surgeons and fear, would I give it all up?

I don't understand why or how, but, I, a very hurting person, don't think I would.

I Pour Out My Heart

2007-08-22T15:09:00.001-04:00

Here I am, once again
I pour out my heart for I know
Every cry, You are listening
No matter what state my heart it is in
You are faithful to answer
With words that are true and heart that is real
As I feel your touch
You bring a freedom to all thats within
In the safety of this place
I'm longing to
Pour out my heart to say that I love you
Pour out my heart to say that I need you
Pout out my heart to say that I'm thankful
Pour out my heart to say that you're wonderful
So wonderful

Yesterday turned from good to bad in an instant. I thought I could handle it this time. I thought I could research aspects of Ella's medical problems and gain some understanding that would bring healing and hope. But, as I should have known, the words I read just brought pain and fear.

And as I sat holding Ella's feeding tube, I laid my head down on her lap and sobbed. This is too much. She is too little.

Information will not make me strong. Knowledge will not give me peace. But, God's grace will give me strength and peace you can't find anywhere else.

And as our iTunes library shuffled, I heard a favorite song. I remembered sitting on the roof of my college in Jerusalem with my dear friend Bethany and we would pour out our hearts to God. That was the only song in my life that I didn't worry about how out of key I was or that I could not sing. I was able to pour out a sincere heart to my God with my friend.

That memory - actually having one - brought me some happiness. But remembering the feeling of Jerusalem at our feet and Jesus in our midst, brought me peace and joy.

can you handle the truth?

2007-08-09T23:47:00.001-04:00

in the midst of my day, i have glimpses of the pain that we felt every moment just months ago. when ella throws up or chokes on her own breathe, my mask of control comes down and my real feelings shine thru.

i have become so good at not feeling that i could go for hours and never feel a thing. i am not heartless and cold - although i think that alot of the time. but, although many of the issues have gotten better, the emotional pain and trauma are still there.

and who could i tell? nick is already having his own issues with all of this. my family doesn't ask. my friends don't ask - those that i still have. i am not good at crying by myself.

maybe this is why my health is bad. maybe this is why i can't get rid of this damn disease called "post partum thyroiditis." maybe this is why the cleanses and salads are doing nothing.

i wish i could just cry freely and sneeze freely and dance freely and laugh freely.

and when someone tries to be polite and says "how are you?" - what they really want is the PG answer. "i'm fine. ella is doing pretty good." done. that's it. anything more would be too painful for everyone.

so, instead, i just secretly need to cry and tell someone "she might be having seizures, too." but, to say those words would be so real and permanent.

and so, i go on about my life and know and hope that no one will really ask. you know, "no, how are you REALLY?" oh my, how the tears would flow.

tonight i saw a lady tonight at church - jeanie - and she loves my children. and she said "how are you doing?" and although i couldn't tell her at that moment, with the service getting out and thousands of kids crying for their parents and bedtime, she really wanted to know. she would have listened and not looked away or checked her cell phone or said "excuse me." she would have stayed and she would have listened.

maybe another day will be right.

or maybe i can lay at the feet of my savior and maybe he will listen. maybe he will understand my pain.

maybe he already knows.

Miracle

2007-06-13T09:41:00.001-04:00

to wait on God can be more than we can handle...and when we finally hear from Him, it can also be, more than we can handle.

my little ella is only 3 months old, and has already, felt His hand on her life. after we were told she would maybe not see out of her right eye and could possibly be missing a part of her brain, i hit the limit. actually, i had some overage there. but, in the midst of it, i remembered feeling this peace weeks earlier regarding ella's eyes. God was going to heal them. before we knew that the problem was anything more than being a newborn, God let me know what he was going to do.

and to hear that nothing could be done - no surgery, medication, patch could heal her - well, it kind of felt like a challenge.

God, are you really who you say you are? are you still Jehovah Rophe? Do you still heal? If I ask you, will you let me down?

and so i took my fear and doubt and hope and trust and invited some friends to come lay hands on my sweet baby and take God up on his offer.

and He showed up.

our friends said they felt His presence there. some saw beautiful pictures that they shared. some said that it helped renew their own faith - it sure did ours.

and then we just had to wait.

i was sick to my stomach approaching the reception desk. i knew He could do it. i knew He promised to do it - but what if ella was the exception? what if we had to learn a lesson like that would take a while? (isn't it sad how we always think that God gave us something terrible to teach us a lesson? that is so dumb. He loves to give us good things, not painful things. )

but again, He showed up. and the optic nerve in her right eye, which a month ago was not developed, today looked almost the same as the normal nerve.

and what was medically impossible, became possible with the God who healed yesterday, today and tomorrow.

and i felt, for the first time in months, like i was in a summer rainstorm, barefoot, with my eyes closed and looking up towards the sky and warm rain hitting my face.

and i don't need an umbrella from this grace that is pouring down from the clouds like rain.