One of the dirty little secrets of this world -- the medically-fragile, complex kid world -- is that as moms, we are not martyrs, or saints, or goody-two-shoes who wake up each morning and happily go about the business of keeping our kids alive. We are, quite often, completely pissed off about it. There is simply so much about which to be angry in this world! Anger at the doctors who so rarely bother to hear us, and even more rarely bother to give us answers. Anger at the way the rest of the world can go out to dinner on a whim, or plan a vacation, or even find 10 minutes to clean the bathroom. For me, though, the thing guaranteed to set off my increasingly-short fuse is the innocuous comment of "gee, she looks great".
Let's talk, for a second, about how my child (and the ones like her) actually "look" on any given day. J. is overweight -- a big, pregnant-looking belly that's the result of too many meds and too many illnesses that lead to far too little ability to run around and play. She's also "dysmorphic", which is fancy genetic speak for "funky looking". She's totally blind and has a habit of rocking her head that, despite the best efforts (and occasional "you have to try harder") of therapists is still incredibly obvious. So even dressed in her prettiest clothes, with her hair in a shiny braid, she still looks different. But that's not the part that makes me mad. No, what makes me mad is what those "gee-she-looks-great" people don't see. The way that they can so easily dismiss the 48 hours we spent in the hospital after her 20th (or was it 21st?) surgery, where J. was flushed and feverish, and at almost 10 years old, wanted only to watch repeat episodes of Dora. The way that those same people can ignore the 15 minute conversation we just had about the 18 meds and 4 treatments she has to have each day just to stay alive. The way that those people can somehow think each surgery will be the one that "fixes" her, each antibiotic will "cure" the disease. What I hate is what is behind the "she looks great" -- because what they mean, often times, is "what the hell are you complaining about, she's a great kid, she's alive, and she's in school, so how bad can it really be?"
How bad can it really be? Well, in the past 10 years, I've learned it can be really, really bad. And that even when it's awful, even when she and I are both crying during the treatment, even when she's screaming at me that she doesn't want to do this anymore, even when she's so exhausted she sleeps for 12 hours at night....if we can get up in the morning, put on a polka-dot dress and tights with the sparkly red shoes, and make it to school on time...everyone still thinks "she looks great".
