October is Spina Bifida Awareness Month and SB is said to be the most common permanently disabling birth defect in the United States. Sharing this beautiful story of triumph today: "Our story of yes started with a book — Knowing God by J.I. Packer. I was reading the book for an online book/Bible study. It was a meaty book, and I struggled to get through many parts of it.
But then I read these words: “Nor is it the spirit of those Christians – alas, they are many – whose ambition in life seems limited to building a nice middle-class Christian home, and making nice middle-class Christian friends, and bringing up their children in nice middle-class Christian ways, and who leave the sub-middle-class sections of the community, Christian and non-Christian, to get on by themselves. The Christmas spirit does not shine out in the Christian snob. For the Christmas spirit is the spirit of those who, like their Master, live their whole lives on the principle of making themselves poor – spending and being spent – to enrich their fellow men, giving time, trouble, care and concern to do good to others – and not just their own friends – in whatever way there seems need."
Wow. That hit me right in the middle of the eyes. We had already adopted twice. We had the “all-American” family. But I knew then and there that God wasn’t finished with our adoption journey quite yet. I soon started exploring waiting child lists, and one day I saw her. Her picture literally took my breath away, and I knew she was ours without knowing anything about her. Turns out she was born with spina bifida, and she had an "unclear” MRI. My husband was not as enthusiastic about pursuing her as I was. But the Lord kept taking me back to those words of Packer’s which echoed one of my favorite Bible verses of all time: Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world (James 1:27).
We sent her file to a doctor to review, and what she had to say wasn’t as scary as we had feared. We also talked with a family who had had her file reviewed by another doctor but decided not to pursue her. There were still many unknowns, but we decided to jump in and add this 7-year-old sweetheart to our family. We are SO GLAD that we did!
Fast forward 4 years, and here’s where we stand health-wise with our amazing daughter: her SB lesion was very high up her spine…almost to her skull. As a result of this, she has hydrocephalus and chiari malformation. Her hydro was untreated in China. Once home, her neurosurgeon first kept an eye on it, as it seemed to be very slow developing. Then we noticed issues with her eyes, which is a common symptom of hydrocephalus, and one eye had started to wander. It was determined that her hydro was starting to put pressure on the optic center of her brain which in turn was causing her eye to wander. So at age 10, our girl received a VP shunt. The surgery was easy and her recovery was fast, but - unfortunately - her eye did not correct itself, so she required a further surgery to correct her eye muscles.
Our daughter is currently doing very well on both fronts, praise the Lord. She suffers some balance issues as well as weakness, mostly on one side of her body. She receives PT through our school district. She struggles in some areas at school, but it’s honestly not clear yet if that is SB-related, or due to the fact that she started school at age 8 and is still playing catch-up. Our daughter is extremely high functioning: she has played basketball and she loves the trampoline and jumping rope. She loves to draw and she loves animals. And she is the most caring individual I have ever met."
- Amy Peterson Miller
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