My 5-year-old son looked at me when I was tucking him in last night and said, “Mom, we really have to do a better job of flossing my teeth every day.” “Yes,” I replied, “the dentist will probably yell at me again next month when you and your sister go for your checkup.” In my mind, I thought, “just one more thing we aren’t doing as we should.” *sigh*
Parenting can be exhausting in general, but with special needs kids, sometimes you feel drawn in every direction at once. I started thinking on it, though, and realized that my kids have a pretty good chance with their teeth – I mean, I have wonderful teeth that they may have a chance of inheriting, they brush twice a day, they chew a lot of sugarless gum, and they have little sugar in their diets. So, we are not the best at flossing, and I only give my son’s mouth a cursory scrub once or twice a day to supplement his own brushing. (And only because he’s in my face with his brush waving wildly at me going, “Eeeeeeeeeee”, while he sticks his teeth in my face) This is not ideal, but I think they’ll be ok. Worst case – they get a cavity, which is relatively simple to fix. I will probably kick myself when and if they get the aforementioned cavity for not doing more flossing, but it’ll just have to do for now.
The same goes for sun protection. I was reading yesterday that we should all slather on high SPF, all over our bodies, every day (UV rays penetrate cloudy days as well!). Well, I wear SPF on my face every single day, we wear hats and sunglasses regularly, and we slather the kids up when they will be outdoors for any length of time in the heat of day, but sometimes I just don’t do it and I know I should. And, my kids look at me and say, “Oh no, Mom, we didn’t bring sunscreen!!” Now, worse case here is very bad – skin cancer is no joke! So, perhaps the moral of this is that I SHOULD worry more about sunscreen than I do, but, then again, this is a potential demon to face, one way out in the backyard that may or may not come to our doorstep. Meanwhile, we fight daily the one pushing his way inside.
To maintain spinal health is a challenge when that spine is healthy, but when it is curving and deforming at a seemingly constant rate, the fight is tiring and overwhelming. Andy and I work every day to push toward even the perfect treatment of the diesase my kids HAVE and we still don’t hit the mark. We do more than most parents of scoliosis patients, because, to us, surgery is a very scary and daunting thing – the demon in the house! But, we are not perfect, and we need to pick our battles, plain and simple. We need to spread around the protective barriers of all the other potential ailments as well as we can, but we need to focus our energy on the one in our house, and everpresent. In other words – pick our battles, do the best we can, do a little more every day, and never keep striving for perfection. But, meanwhile there’s life, and we need to live it and try to enjoy it without the everpresent feeling of impending doom. I know it sounds dark and somewhat ridiculous, but it can feel that way when you’re swept up in it – trying to keep the children innocent to the potential that awaits them, trying to keep fun in the house, but emphasize that serious work needs to be done. This is the tender and difficult balance, and all we can do is fight our battles, one by one, as they come, maybe pushing one or two feet ahead into enemy lines, if we can.