I'm pleased to announce that an essay I wrote about John, my son with Down syndrome, is included in a book that was released on Saturday. Monday Coffee and Other Stories of Mothering Children with Special Needs is available on-line at Barnes & Noble and amazon.
As I was looking at the title this morning, I got to thinking that I feel like a fraud. I don't think I know much at all about mothering a child with special needs. John's "special needs" are so minor. He's delayed, there's no doubt about that, and who knows what the future holds as far as what kind of support he'll need once he leaves the school system, but for now my job is relatively easy. The most difficult part of mothering John has been dealing with his medical issues. I deserve a medal for working through some of the complex medical stuff we've had to deal with.
If you've ever been intimidated by doctors as I once was, you'll find that having a child with unusual medical issues quickly fixes that. I've sought second, third and fourth opinions to find the care John needs. When you've seen more than one doctor for the same issue and no one seems to know what's going on, you educate yourself and end up with just enough knowledge to go back to the medical professionals and demand they take your concerns seriously. I've gotten good at creatively combining words in a Google search to locate the information I need, and then reading studies in medical journals, stopping every other sentence to define unfamiliar medical terminology. I can explain the meanings of porcine bronchus, posterior urethral valves, methemoglobinemia, os odontoideum, and bipartite atlas. When it comes to John's medical care, to keeping him alive, I'm a rock star! The other stuff, the special needs stuff, is easy. This is pretty funny considering how I felt when he was first born, how I didn't think I was up to the task of raising a child with special needs.
So, go order the book, but know that at least one essay-writing mother included in the compilation feels a bit like a phony. (I've also been pretending to be an adult for a few decades, but that's a post for another time!)
This is great, Ann! I sometimes think God gives us the hard, complicated medical stuff, so the other, the actual disability, seems like no big deal. It's all perspective. I love reading what you write . . . wish we could sit down for a cup of coffee together! :)ReplyDelete
That "feeling like a phony" comment in this post resonates with me...Yet, aren't we all jars of clay - and hey, if we are gave in to the phony fears we would say nothing, write nothing, and teach nothing! So happy you are stepping out and giving hope to others! You GO, girl :)ReplyDelete
Ah! I can relate! My son's ped wrote "hypercalciuria" on a paper and before he explained it I had "translated." I understand the world of medicine so much better.ReplyDelete
As for "special needs" I also sometimes feel like a fraud. Delayed? Yes, he is. But heads and tails better off than similarly diagnosed peers? Yes. So much. So we are stuck in an in between. Do I call him a special needs kid? To the nephrologists, OT, PT, pulminologist, developmental pediatrician, dietician and early intervention teacher (& insurance, of course) then yes. To everyone else, he's just my cuter-than-should-be-legal little boy.
Thanks for your contribution! I will have to check it out.