How can I keep from sneezing?

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

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.

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

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."

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...

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

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

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.

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

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.