Your child is not an island.
Except in those quiet moments when it feels so true that he is. When you have Googled and Facebook grouped and lurked on message boards and found not one soul like his. Maybe if you type his symptoms in differently, if you switch “hypoglycemia” with “blood sugar” or leave out the elevated enzyme levels, maybe then you’ll find the hidden cove of similar cases.
I used to think of the term “outlier” in one way, the way Malcolm Gladwell did. It was about Olympic gold medals or perfect SAT scores. I never thought it would be used by a doctor to describe the way my baby’s quirks and maladies don’t fit under any known diagnoses.
Maybe we parents could write a book. Or at least gather in the hospital waiting room and tell a few jokes. You Know You’re the Parent of an Undiagnosed Child When: You have a genetic counselor on speed dial.
Or: You finally get one specialist to admit she is just “fishing” when she refers you to another specialist (whom you’ve already seen).
Or: You constantly walk a fine line between thanking God for the illnesses your child doesn’t have and wishing you could–just once–land this plane in a field of explanation.
You want to make sense of this. I don’t think that’s a sin.
And even though Christ never crumbles, your theology might. You might have to think about God knitting your baby together in your womb. Did He knit in the snags too? How are broken bodies designed? And are grace and mercy foreordained on our behalf? Are they pre-ordered like books on Amazon?
Dear mama, have you moved past the guilt? Have you finally accepted it’s not your fault? It wasn’t the prenatatal vitamins or the job you worked or the way you couldn’t breastfeed as long as you’d wanted.
And can you share all this with a few special friends without hearing the “at leasts” that Lexi Behrndt describes? Yes, you are grateful. Yes, your boy or girl is gorgeous and hilarious and a joy to raise. And, yes, he is so much more than what the medical records detail. You have never forgotten to remember your child as a gift. You are the best at finding each gem and relishing it. You are his mother, the great giver of praise.
And, yes, it still hurts.