Before our little boy was diagnosed with Shwachman-Diamond Syndrome, I never really gave much thought to the needs of parents with kids with special needs. And while I would be the first to say that SDS isn’t the worst possible diagnosis (and some would probably argue until the world ends that SDS makes him a true “special needs” kid), it also has given me a glimpse into the lives of other parents that do have truly special needs kiddos.
|My Two Munchkins in a recent picture|
With our daughter, if she had a cough or a sneeze, I never really had to worry it would turn into something more. (I did, of course, but she was never seriously sick.) If she missed being in the nursery at church one week, she’d be back the next week, maybe with the tiny tendrils left of a cold, but virtually all better.
Now, if my son coughs in the middle of the night–even if it’s just once or twice–I wonder if he’s coming down with a cold. Or the flu. Or worse. Will he have to be admitted to the hospital–again? How long will he stay?
And, it all runs through my brain in about one-half of a millisecond.
Every special needs kid is different. Whether the kid has SDS (like ours), leukemia, Downs Syndrome, or something else more rare like a muscle atrophy condition, there’s an adjoining parent or two who struggles with the idiosyncrasies of their child’s disease. With us, we’ve had to learn to accept the medications given daily (which I think is probably the same with most parents of kids with special needs) and the fact there will always be that “What If?” question in our brains. And the specialists that will have to be involved with his long-term care. And the fact he may not be as tall as his mom when he hits adulthood. (I really hope we’re at least at eye-level. I’m a tall woman–5’8″–but I can’t imagine having a child shorter than me when they’re an adult!)
While most people tend to focus on the kids with special needs, sometimes the parents and sibling(s) get forgotten. If you’re in this boat, maybe you should take a minute and give the mom or dad a call just to see how they’re doing. Offer some babysitting time. Trust me–it’s scary as a parent to hand your kid over to someone when you don’t know what could go wrong–then you have the added concerns of medications, and it’s nearly paralyzing. Since our son was diagnosed positively, I can count on two fingers how many times my husband and I have left both our kids with someone other than a family member. It’s not that I don’t trust anyone, it’s that I personally feel it’s probably overwhelming for someone to know what they need to do, even for something as “simple” as mealtime.
And, maybe I don’t want to burden anyone else with the complexities. Who knows.
Until next time,