It turned out she was a few weeks ahead of me so she got to go first to have the 18 week ultrasound to find out if she was having a girl or a boy. She was going on a Friday so I waited excitedly for the call. Friday ended and turned into Saturday. I fretted but chalked it up to a busy weekend. Sunday rolled around and I thought surely their appointment was cancelled...or something. I'd call tomorrow. But later Sunday afternoon the call came. The technician had seen something concerning on the ultrasound...something on her back...maybe on the spinal column...they weren't completely sure...spina bifida...sending them to Duke for more tests...the baby might not be able to walk...but they were going through with the pregnancy.
Breathe.
I don't remember what I said. I just remember trying not to cry. Trying to be supportive. Trying to reason through something that hurt worse than anything I could think of up until now in my life and it wasn't even happening to me. My friend's little girl would likely not be able to walk.
This couldn't be happening.
We prayed for a miracle.
I had to wait two more weeks for our ultrasound. It was an eternity. And it was worse than you think. You see, my husband was born with a birth defect called cranium bifidum. You can google that if you'd like, but honestly I don't recommend it. The photographs are upsetting.
Encephalocele, sometimes known by the Latin name cranium bifidum, is a neural tube defect characterized by sac-like protrusions of the brain and the membranes that cover it through openings in the skull. These defects are caused by failure of the neural tube to close completely during fetal development. Encephaloceles cause a groove down the middle of the skull, or between the forehead and nose, or on the back side of the skull. The severity of encephalocele varies, depending on its location. (Wikipedia)
Here's a glimpse of what an xray of someone with encephalocele/cranium bifidum would look like at age 3 months and after the skull has had time to continue to grow by age 2 years:
My husband is part of a less than 1% population with cranium bifidum who survived during the 1970's. Even though he had large skull openings, there was no membrane or portion of the brain protruding through his skull openings. In short...
My husband is a miracle.
We had already been through genetic counseling with our first child. We knew that there was an 80% chance that our children could be born with cranium bifidum or any other nerual tube defect. Spina bifida is a neural tube defect. Our friend's baby, more than likely, had spina bifida.
It was supposed to happen to us.
But it didn't.
After many level 2 and 3D ultrasounds, it was determined that our baby was fine.
In July of 2008 Miss Awesome was born on the very day that our family closed on and moved into our new home. (Still not sure how I did that 8.5 months pregnant.) I will never forget that day. Awesome's mom was on bed rest for the latter part of her pregnancy because of low amniotic fluid so they scheduled a c-section a few weeks early. I remember the text:
Me: We have keys!
Her: We have blood tests!
We got to see Awesome a few weeks later because she was in the hospital for awhile right after she was born. I was so distressed that I couldn't visit at Duke because I had my own little one with me who had just turned 1. If I was distressed I couldn't even fathom what my friends were feeling.
Exactly four weeks after Awesome was born, I went into labor with my little one. The texts from that day:
Me: My water just broke.
Her: Go to the hospital. (although I think that one was courtesy of Awesome's dad)
Few people know this and I often forget, but we did find after our daughter was born that she had a very diluted form of cranium bifidum where only her top fontanel was larger than normal - the diameter was about three inches - but it closed on its own by the age of three. She even has the classic hairy spot at the base of her spine that can indicate a neural tube issue.
We know what 'almost' feels like. But we don't really know.
Not long after that, two little girls began a friendship that would permeate any type of disability, struggle, or stereotype. They were like two peas in a pod from the beginning.
All these years later my husband and I have watched our dear friends live life with complete grace, facing something that is just plain hard. Somehow, they have made this unknown a part of day to day living that is more seamless than brushing your teeth each morning.
We have watched this unshakable family tackle clinic days, braces, therapists, and medical bills for five years now. We have watched this unshakable girl learn to sit up, crawl, scoot, climb stairs, wheel, and even to walk.
We know a miracle when we see one. A miracle is what everyone prayed for, after all.
A few weeks ago we had the privilege of walking in the Walk and Roll for Spina Bifida. I was not expecting all of those memories to come flooding back, but for some reason they did. Teary-eyed with gratefulness, I just said a prayer of thanks for the love we share with this family who is so special to us. I thanked God for every what if, almost, and unanswered prayer. Because everything that IS, is just as God intended it. And I believe that this little girl is just perfect exactly the way she is.
She is, of course, full of awesome!
Psalm 139:16-19 ESV
For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.
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