beauty for ashes

Dearest Lily,


I've been waiting to write this letter to you for a long time.

I have written so much about all my emotions in my letters to you. I've never shied away from putting it all out there, even when I know that not everyone who reads about our journey together will understand. Because this is our journey, and these letters are for you first and foremost, sweet Lily.

But in spite of that, I do sometimes worry that people who love us..or those who don't even know us...will think that the struggles we've gone through emotionally because of you having Down syndrome, somehow mean we love you less. And that is so far from the truth, Lily. My heart is so full with loving you, it spills over into everything I do. I'm a better person for having you, we're all better people for it. And I am hopelessly, shamelessly in love with you, baby girl. I ask Daddy all the time- seriously, did we ever love a baby this much??

So when we struggle with our emotions, it's never about loving you. Not ever.
There are times that I almost forget you have Down syndrome. You are so very normal, so healthy, so bright and alert and connected to us, that it doesn't seem real to me. You are tiny for your age and lagging in certain areas of development- but not outrageously lagging. Since you were premature, and because you are so tiny, it seems normal that you are doing what you're doing.
But then something will happen that triggers a little of that uneasiness about your diagnosis, and I have to stop and think about reality...that you do have Down syndrome. And we haven't yet realized all that that means. I have to admit...I have a hard time seeing adults with ds. And honestly, Lily- I think it's because I have this hidden thought... that you will somehow outgrow your ds.

As if that were possible.
It's such a crazy thought, but I'm just being honest...I sometimes think, "Maybe she'll just be one of those children who blows everybody's minds and is just totally 'normal'- in spite of having an extra chromosome." And I have had so many people- people not familiar with ds- ask me if maybe you have a less severe form of it. And something in my Mommy's heart clings to that, and wants desperately to believe that her little girl will be okay.
So with those painful admissions out of the way, I want to go back to the day you were born. I wrote your birth story on Mother's Day this year-a gift to myself. Although the day of your birth was one of the most difficult days in my life, it was also the most beautiful.
And for the most part, my account of that day focused on the beauty that we experienced.
But just like life has doses of good and bad intricately woven into its elaborate design, so too that day was a mix of pain and grace and heartache and incredible joy.
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So here is Part 2, dearest Lily.
After the doctors determined that you were not getting enough oxygen on your own, they told Daddy and me that you would need to be moved to the NICU. Daddy and Mackenzie and Josiah went with you, while our other friends went to make phone calls and get something to eat. My wonderful friend, Kelly, stayed behind to keep me company until Jason came back to update me on how you were doing.
The nurses didn't really know what exactly was wrong with you, and at the time I didn't feel overly concerned that you needed to be in the NICU. I thought it was just our little hospital being extra precautious because you had been born with ds.
After an hour, Daddy came back to tell me that the doctors still couldn't figure out why you weren't able to keep your own oxygen levels up. He said they were requesting an echocardiogram to rule out any heart issues, even though we had so many while I was pregnant.
Daddy went back to the NICU, and Jason helped wheel me down the hall to see you. I was so shocked and sad to see you hooked up to monitors and with tubes taped into your nose for oxygen. For the next several hours we watched doctors and nurses come in and out to look you over and perform tests to try to figure out why you would turn blue without oxygen.
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After many calls back and forth between Doernbecher's Children's Hospital in Portland, your doctors decided that you had too much blood, or "thick blood", and that you would need to be transfered to Portland. Our small town hospital had only done the procedure you would need- a transfusion/exchange procedure- once in 14 years. The doctors at Doernbechers would insert a needle into your umbilical cord stump, withdraw a precise amount of blood, and inject a saline solution in its place. This would thin your blood, and hopefully resolve your oxygen issue.
The problem was, Mommy's doctor didn't think I was ready to be discharged- I had just given birth 5 hours before. I would receive the care I needed at Good Sam, but because of our insurance, I would not be considered a patient at Doernbechers.
Lily, I can't tell you how my heart broke- I had never ever been separated from my babies after delivery. My favorite time in life- besides giving birth- is my first night alone with my babies in our hospital room. I never sleep that first night- I am too emotionally high to come down, and all I can do is hold my baby and study every feature, smell the scent of their sweet baby newness; sleep has no claim on my heart or mind that first night.
So telling me we were going to be separated felt like a knife in my heart- I don't know that I have ever felt so out of control emotionally. Daddy hugged me and said he would take care of you, Claire, my midwife, tried to console me, but the thought of my baby girl being taken in an ambulance an hour away from me was more than I could bear.
I insisted that I was going with you- I didn't care that I wouldn't be a patient at Portland, I wasn't staying in Corvallis. I held you in my arms and pleaded with Daddy, with Claire, with the nurses- I sobbed like a baby, and I know I made it very hard on those poor people...who told me it was in your best interest that I stay. They said a worn out Mommy would not be able to help her baby much, and I had a better chance of being able to nurse you and help take care of you in the NICU up in Portland if I had at least one night's sleep.

Claire told me she would make sure I was given a good sleeping medication for the night, and that they would release me first thing in the morning.
Daddy assured me that he was going to ride in the ambulance with you and never leave your side.
The doctors called Portland to have an ambulance sent, and suddenly Daddy and I realized- your brothers and sisters would not be able to see you if they did not come to the hospital immediately.
And that's when it hit me.
We had never told them that you might have Down syndrome.
Long before, when our ultrasound showed some markers, we had decided to only tell Jason, Naomi, Josiah and Mackenzie about the possibility of you having Downs. We felt it was best not to put the younger children through the uncertainty of everything, until we actually knew.
And honestly, Lily- I've always questioned our decision about that.
How much can little hearts take? How can they process things that adults even have a hard time processing? Is grief better doled out in small doses, or swallowed down all at once?
But the ambulance was on its way, and Daddy and I talked and decided that we had to tell them ...we didn't know how long you would be up at Doernbechers, and we did not want them to accidentally hear it from anybody in the mean time.
The children had been waiting at our home, and friends and family lovingly served as babysitters, coming and going throughout that long day...and all the children knew was that you had arrived safely around noon. They had gone to sleep the night before, and woken up to find Daddy and Mama had gone to the hospital..later they said it was one of the longest days of their little lives.
What I didn't know was that somehow, through worried, whispered conversations at home that day, Tyler and Caleb had overheard the words "Down syndrome".
They tell me that they didn't know what to think..they waited, wondering at home, wanting so much to see their new baby sister, but worrying too.
Was I wrong to wait until we knew to tell them?
I know now, by looking at these pictures, that Tyler was examining you closely in those first moments after their arrival at the hospital.
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I am forever grateful to the kind staff of our little hospital, for breaking the rules, and allowing all of our children to come into the NICU together...to say hello and goodbye to their new baby sister in ten minutes.

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Ten minutes that would change their lives forever.
Ten minutes to explain to them that you were not what we expected.
Ten minutes to break little hearts and try to put them back together again.
After everyone looked at you and ooohed and ahhhhed about how incredibly tiny and sweet and cute you were...I knew it was time. I looked at Daddy over happy little faces and smiled through tears and nodded...
Daddy smiled but looked pained and I saw the question in his eyes- do we need to tell them now?
This was supposed to be the happiest moment- when our family celebrated a new life added to our bunch, the day we had all been waiting for.
I nodded again- I didn't want anyone else telling your brothers and sister about you- I wanted that chance to explain how very wonderful you were, and that Down syndrome was not a death sentence, it was a very small part of who you were.
Daddy said we had something to tell them...that God gave us a very special baby...
I'm crying now, Lily.
And that they were going to love you so much...
Daddy's voice broke a little..
And did they remember Kari?
Kari was a classmate from the children's school. Kari has Down syndrome.

Slowly looks of shock came over your brothers' faces. Tyler first- he looked down at you again, and his face crumpled in grief.
This isn't happening. No, God, not like this.

Daddy tried to get the words out, but it was so hard, and we were all crying then. One by one my babies' faces showed recognition of what this meant. It was like a row of dominoes from the oldest to the youngest..

Tyler backed away, shaking his head in denial, tears streaming down his face...Jonathan was sobbing and looked so hurt- Caleb was so pale, so white- I will never forget the look of shock on his tiny tear-stained face. He looked at me helplessly, in disbelief, his eyes begging me to tell him it wasn't true.
Abigail kept staring at you and crying, Noah and Jackson clung to us, not knowing what it all meant ...but crying nonetheless.
It's not fair. It's not fair. It's not fair.
Daddy kept talking, trying to sooth with words, explaining that you were still their baby sister and that they were still going to have so much fun with you, teaching you things, playing with you...
We held each other and cried and cried, and I saw the nurses at the station crying too...
I drew my babies in close, tried to hold as many of them against me as I could- "Look at her, look how beautiful she is- Noah, look at how much she looks like you!" Daddy kept talking about how you were going to need all of them- need them to love you, to help you, and this wasn't a terrible thing, just different.
I held you up for the children to kiss you- "Come give her a kiss, look how sweet she is," I kept saying-
Please accept her, please don't think she's any less of a baby... please let this all be a dream.

One by one the children held you...Mackenzie took pictures through her tears...
Jonathan held you and cried and kept kissing you over and over...
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He cried so hard, and I just wanted him to say what he was feeling- good or bad- to talk through his emotions to us..."What is it, what are you feeling?" I said through my own tears.
"I just love her SO MUCH," he said, and kept crying but he was smiling, "I just love her!"

Abbi was so quiet and looked so scared, but when she held you, she smiled...

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..and kissed you and said how cute you were.
Jackson held his hands out to hold you...

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And the others leaned in to kiss you as well..

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We explained that you would have to go to Portland for a procedure overnight... and that we didn't know how long you would be up there. We talked about how we needed the children to be praying that everything would go well, and that God would give the doctors wisdom to know how to help you.
But through everything, I knew your brother Tyler was still not okay. He wasn't just sad, Lily. He was angry. His face was a picture of hurt and betrayal and shock, and I knew he was at a crossroad. I saw bitterness in his expression, and it scared me.
I know too well what grief can do, if left to fester too long...it yields to bitterness. And while I didn't think ten minutes was too long to hold onto that, I was worried for what might be brewing in your brother's heart over the days ahead. I whispered to Daddy that Tyler was not okay..he pulled him aside and held him saying, "Talk to me, Tyler...what are you feeling?"
Ten minutes to fix it all.
Tyler shook his head, his arms crossed over his chest and face contorted in grief.

"Talk to me," Daddy said, hugging Tyler more closely.

"It's NOT FAIR!" Tyler finally cried. "First Mom's miscarriage, and now this!"

My sweet 13 year old shook with sobs...Daddy held him and told him that life isn't about things being "fair"- that sometimes things just happen, and we might never understand why, this side of Heaven.

But God is still in control, no matter what it looks like- and we cannot allow ourselves to get bitter, or we'll never make it. We have to trust that God is good, no matter what, and that He is going to help us through.

I asked Tyler to come hold you....

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And although that picture still hurts Mama's heart to look at, it also gives me hope.
Because God can take our pain, Lily.
He can take our bitternesses, our grief, our disappointments, our lack of faith, our tears...
He can handle it.
For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin. Hebrews 4:15


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And maybe He didn't fix it all in ten minutes.
But look how far we've come since that day...
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God can take our darkest hour, our deepest fears, and turn them into beauty...
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 ...He will give a crown of beauty for ashes, a joyous blessing instead of mourning, festive praise instead of despair. Isaiah 61:3
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I'm so thankful for our beautiful, joy-filled family, dearest Lily.

And so very thankful for you.

All my love forever,
Mama oxox