So, as some of you know (and have probably heard way too much about) I desperately need to finish the novel I have about halfway finished before I start work on another one, or else it may never be done. HOWEVER, there’s always a new idea in the pipeline, and (as some of know) my next one is about infertility.
Yes, that would be why nearly all of the blogs on my blogroll are infertility or parenting-children-with-special-needs blogs. Even though I’m 17.
Because I can.
But anyway, because of all this reading (and even though I might not do NaNo because I’ve promised myself I won’t try to write another major work until the one I’m in the middle of is done, and I really don’t want to cheat at NaNo) I’ve started to wonder about what this parenting children with special medical needs really means.
I’ve never thought of myself as different, not in that way. Never thought of myself as a sickly child, never thought that I, too, might belong in the, for lack of a better word, “medical baby” category — for those babies with medical needs beyond the norm, be it surgery, therapy, or whatever. Or that my sister might.
But do I? What says I do and I don’t?
When I was small, I had a nearly continuous stream of ear infections (my ears are really kind of too small for their own good). I had three sets of ear tubes placed. In fourth grade, I had a cholesteatoma removed from my ear, and I now have a synthetic bone in that ear. I had bad hearing, waxy ears, and (I think) poor fluid drainage. I saw an ophthalmologist for my cafe au lait spots (spots which look like someone spilled tea or milky coffee on me, sometimes more visible than other times), which could be linked to an optic nerve disorder. (I was borderline and luckily I’ve never shown symptoms, but I have to go every year, just in case.) I saw my regular pediatrician, the aforementioned ophthalmologist, and an ear, nose, and throat specialist. I had HUGE allergies and I eventually had to have a full allergy test, where they prick you with different allergens to see how you respond and to try to identify the source of the allergies. True to form, I reacted HUGELY to the general allergen, and then proceeded to not react to ANY of the specific allergens. Not dust, not pollen, not fur. Nothing. Pricked in the back over twenty times for nothing. Thankfully I seem to have outgrown the allergies, like so many of my medical “issues”, but to this day we have no idea what I was so allergic to and what kept me sick for literally years on and off. Does that make me a sickly child, the sickly child I never thought of myself as? To some, I guess it would. But I hardly ever got genuinely sick — it was always just allergies.
Children who have medical issues which necessitate going to see many doctors often begin to associate doctors (and doctors’ offices, hospitals, etc) with unpleasantness, and begin to hate going there. This is certainly true in me. Ever since I can remember, I have hated doctors fiercely, often with no justification (except that they were doctors). And since I was smart, apparently I was often the Goddess of Obnoxious herself to doctors and nurses, and really, anyone who happened to be working in the hospital and made the mistake of trying to be civil to me. (I don’t really remember this; I only remember HATING them.) Does this kind of “phobia” (I think it’s called that, but I never remember feeling afraid, only angry) mark me as one of those children?
(Parentheses are my friends. Btw.)
My sister had hernias when she was tiny, two of them, so long ago that even the thin white lines of the scars have faded completely. She had to be flown to Honolulu for surgery. We do have a family history of them and she was only diagnosed with one, so luckily the surgeon thought to check for another, and lo an behold!
Does that make her a “medical baby”? Do my repeated surgeries and chronic ear problems make me one?
What truly counts? Is there really a family out there who hasn’t had *some* kind of medical issues beyond the normal colds and flus and fevers that children get?
Obviously there are babies born with more serious issues than mine. Babies born with congenital heart defects, for example, or those born with kidney failure or liver failure, who need transplants almost as soon as they are born. Mine were never life-threatening. My procedures weren’t very risky; the riskiest one was the cholesteatoma, especially because, since it was a growth, there was a chance it could grow back. It was certainly the most serious of the surgeries I remember, with at least a month-long recovery (during which they told a kid with chronic allergies she mustn’t sneeze. For at least a month. Needless to say THAT one went out the window pretty fast).
When I had my wisdom teeth out this past summer, I was slightly worried about the anesthesia. That was a strange feeling to me, one I’d never expected when I learned of the surgery. I’d expected to be worried about the pain, of course. I expected to be worried about how I would cope, and how the surgery would go. The usual things. But I’ve had to deal with anesthesia all my life, it feels like. It’s strange to think that my last surgery was in fourth grade. Strange to think that my last surgery was almost a decade ago now, eight or nine years, when I was eight or nine years old. Because inside, I never felt like I was the girl who would be a little bit scared of being put to sleep by something outside my control. Inside, anesthesia felt like old hat, just another routine bit of life. I guess four surgeries before you’re ten will do that to you.
Do other people feel like that? Do people with heart defects — especially ones that were cured — forget about it all sometimes? I don’t think about it very often. I’ve outgrown most of my medical issues. I haven’t had ear tubes in over a decade. I haven’t had ear surgery since fourth grade.
Was I a medical baby, someone with medical issues most babies don’t have? Or are most babies “medical babies”, and I was just one baby among countless others, none of whose problems were exactly the same as mine, but still perfectly normal, my medical needs fairly common?
Maybe I’ll never know.
