"Mama, when Gracie's in heaven, she won't need a wheelchair anymore, right? And she'll be able to talk to me, right?" (5 year old Ana, this week)
Our Gracie is our first-born child. We've been a family for nearly 7 years now. We couldn't imagine life without her. God has used her to shape us in so many ways.
But being on the mission field with a growing nonverbal daughter with spastic quadriplegia cerebral palsy, epilepsy, significant development delays, GERD, constipation, and a swallow disorder is not always easy. God had it all planned out, though. He directed me to medical school so that Gracie could have her own personal doctor!
(She LOVES her HOL friends and is very popular!)
Our daily challenges with her include:
- No special education so she's homeschooled. She much prefers that someone BESIDES Mama teach her, so this summer I hired a dear friend who is in university for education. I've trained her to be Gracie's one-on-one tutor (and do some stretches with her too!).
- Limited therapies available in this region - and, to be honest, I know a lot more than many of the local therapists because I had the opportunity to study rehab medicine under top experts and amazing therapists in a very HIGH resource region of the world.
- No specialized medical supplies available here - youth diapers (yes, she's now a youth size!!), thickener for her liquids, durable medical supplies. God has been so gracious and we have not run out of thickener yet! I also have found various supplies from various sources and an amazing lady sewed Gracie dozens of cloth diapers before we moved to Africa. But, that doesn't mean that I'm not always calculating, in the back of my mind, how many more days of thickener I have until we run out. When she's having a good day, I'll challenge her with sips of un-thickened milk.
- She's STILL nonverbal and struggles to communicate. We backed up back to picture exchange and she seems to be doing very well with that. Her IPad skills are still too inconsistent for communication - but we keep trying! We're so blessed that Gracie's "team" in the USA still stays in contact with us and even sends us stuff to help her along! But on days like today... it's difficult. She fussed all night until I finally took off her AFO's (ankle foot orthotics) and gave her tylenol and laid with her for hours. Today I examined her more carefully in the daylight and (honestly, much to my relief) it seems that one foot is painful to her. But she can't communicate pain or location of pain - which is so challenging and painful to Mama!
- No regular check-ups. I have to be her doctor. I don't get to sit back and be Mama and let other doctors advise me on my children's health. I'm painfully aware that her hips are slowly dislocating and will likely require surgery. But I can't rely on regular ortho appointments to monitor them for me. It's just something that nags at me and even torments me on a bad day. There's no easy way to monitor her health. There's no way to check a depakote level, so I just have to watch her for any signs of bone marrow suppression and keep track of her seizures. I did get a complete blood count done last year and I'll probably do this same in December again.
- I am her wheelchair tech. Um... yeah. I watched very attentively and asked hours of questions at every one of Gracie's wheelchair fittings... but... there's only so much I can "grow" her chair without additional parts. After adjusting it all that I can, she's still about 2 inches too big for it. The kid won't stop growing! ;-P Her AFOs STILL fit (two years in the making!!) thanks to careful craftmanship by her orthoticist who made a soft foot insert bootie inside the AFO. When the AFOs were getting too tight, I just removed the bootie and got an extra year out of them!
- The insurance that we have is hardly paying for anything. It's really okay, until she needs some major equipment. We budget an extra amount every month JUST for Gracie's needs and God has provided abundantly.
I'm describing all of these challenges (and there are many more that I haven't shared) for several reasons:
1) There may be another missionary family out there who made the choice to move to a low resource setting with their child with significant special needs - I'd love to hear from you!
2) Pray for us and for Gracie! Pray that God would give us wisdom and discernment. Pray that God would keep her healthy and delay her need for surgery.
3) These are the challenges that I (a doctor) have with my Gracie (the most joyful, engaging, delightful child you may ever meet!) in the context of an entire fan club of knowledgeable people in a high resource setting in the USA, after 5 years of the best medical care in the world getting her "tuned up." Imagine what it is like for a parent here who is struggling to feed their family each day by gardening. What challenges face that family? What would you do if faced with the decision to either care for your disabled child (it's more than a full time job!) OR feed the rest of your children? Would you be able to hang in there if your community, friends, relatives were insistent that your child was disabled because of demons? When your child became too big to carry on your back, how would you keep her safe from snakes, fire, aspiration, heat, cold? These are the families that I feel compelled to support. Families who are in that impossible position.
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