Saturday, December 17, 2011
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. :)
Friday, December 16, 2011
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.
Sunday, December 11, 2011
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!
Monday, August 22, 2011
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! :)
Thursday, December 23, 2010
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.
Monday, September 27, 2010
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.
Monday, July 26, 2010
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.
Thursday, May 6, 2010
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
The other reasonI’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.
“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.
Friday, February 12, 2010
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.
Thursday, December 24, 2009
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.