Ellen from Love That Max brought to my attention that Congress is considering a National Special Needs Parents Day. My initial reaction is a seething rage. It feels patronizing. It feels like pity. It feels like the government is saying, “Oh, sorry you got stuck with that kid. You know, the one with the problems.” As hotheaded as I am, I think that might be an overreaction – but even after careful thought, I am completely against it. Let me tell you why.
If there was one thing that took me a long time to get used to, as the parent of a special needs child, it was the attention of taking Namine out in public; the mall is a prime example. Namine has almost no equipment now, but that wasn’t the case even a short time ago. We had her kid kart, which is huge. As small as Namine is (and smaller yet as she was), it had to be, for all the equipment she had – ventilator, suction machine, feeding pump, the bag that held the supplies for all these machines, as well as the necessaries for any baby, like diapers, wipes, and such. If that weren’t enough, Namine herself draws attention, because frankly, people aren’t used to her tiny legs. (Heck, most nurses new to Namine don’t even know what caudal regression is. We’ve gotten very good at lightning-quick explanations of what it is and means for her.)
Because of all this, we don’t like to draw attention to ourselves, and we certainly don’t want a freaking holiday for it. We treat Namine as normal: we speak to her normally (signing for emphasis, but also so she feels comfortable signing back), we give her normal food, we act normal around her in front of other people. To summarize: she is normal. And we believe it’s important that she perceives not only that we treat her normally, but also that she perceives herself as normal.
The focus is not me
I often identify myself on this site as “the parent of a special needs child,” but it is not to say “look at me, look at me” – it’s because I’m talking about stuff that you and your normy kids won’t ever have to worry about. Your kid won’t ever have to have open heart surgery – twice. Your kid won’t have to have jaw surgery, palate surgery, stomach surgery, or foot surgery, God willing. It would be my hope that no one’s child would ever have to go through what Namine has gone through, but it is a fact of the life and the cursed world we live in that there are disabilities.
Be that as it may, I want no special day to recognize me for being what I would be anyway. I would not have chosen it, if God had given me the choice. If only He’d checked with me first. But that’s not how He works – He gave us Namine as she is, created her as she is, designed her as she is. And we love her for exactly who she is, but that’s doesn’t make us super heroes, it doesn’t make us special. We’re parents. Just parents, after all.
A jury of her peers
Namine has some little girl friends around the neighborhood, and they’re all older than her. I’ve talked about this before, but I believe it bears mentioning again. Upon first introductions, we were afraid of how they might talk about or treat Namine. But we needn’t have worried – they are aware of her differences, but the differences themselves are not the point. The point is, she is a playmate, an adorable, smart little girl whom they want to play with. That is enough.
My last thought on the topic is that it would be selfish of us to bring extra attention on Namine, just so we could have some recognition. Selfish, and wrong. Namine has enough tribulation ahead of her, with the prospect of school and all that. To be blunt, Jessica and I have worked harder and come through more fire in our five years of marriage, because of Namine’s health problems, than most couples will endure in a lifetime, and perhaps not every couple could endure it. I’m willing to talk about all this here, on our own website, but I’ve no desire to proclaim how great a parent I am.
Because I’m not. I’m just doing all I can for the daughter I love. Giving her every chance I can, and loving her with all my worthless heart.
If this is all the love my spirit can give
Take it back tonight
There is not a reason more to live