Rare Disease Day: Thanks Docs! From a Mom Parenting a Zebra

There's an old bit of advice given to doctors. If it has four legs and a mane, and you're not in Africa, it's probably a horse, not a zebra.

In other words, when diagnosing a patient, don't look for the rare diseases first, look for what is most common. And that makes sense.

But what happens when your child IS a zebra?

Today is Rare Disease Day, so in solidarity with other parents of rare disease kids, I offer up this ridiculously cute picture that sums up our world.

Photo of boy reading newspaper

Being the parent of a zebra means
a. lots of lab draws and appointments with specialist (in this photo he waits for yet another blood draw to test kidney levels)
and
b. (if you're a parent like me) lots and lots of research and reading whether it's
-- reaching out to the fifty other parents nation wide whose kid is like yours
or
--reading (and trying to comprehend) journal articles and college textbooks to learn the anatomy and medical language necessary to understand the lots of lab draws and appointments with specialists (see "a").


But don't feel sorry for us. The rewards are greater than the costs. I think that is ALSO summed up in the ridiculously cute picture above.

Happy Rare Disease Day. Thank you to all the doctors out there who are studying these rare cases. You're helping us find ways to make life as great as possible for kids like mine.

Don't be sorry _____ , because I'm not.

Did I tell you my son has hearing loss? Oh, right, I haven't been putting a ton of his medical stuff up here over the past year (mostly because lots of it is up in the air and has nothing to do with prematurity).

THIS post (click on link) has nothing to do with hearing loss, either, but it could. I could easily re-write this article to say "Don't be sorry my son is hard of hearing, because I'm not."

So for those of you who have kids with special needs -- be it blindness, deafness, need for AFOs, etc, how do you approach those needs or the people around you who make comments? How do you respond to the "I'm so sorry"s that you hear?

Out of the bubble - we caught RSV. But it isn't as bad when you're three.

My son got sick. He was so cranky that we went in after just a day or so of illness and found that he had an ear infection. After three days of antibiotics and several renal panels because he was acting just that weird, we went in for another check up at the doctor's office. She was concerned about his oxygen saturation and sent him in for overnight motoring at the hospital. I thought it'd be a quick stay.

That night he was put on oxygen. For two nights and the better part of his second day there he needed oxygen. On the third night he finally saturated normally so we were able to go home.

I knew we'd have to leave the bubble of isolation eventually, and I knew that with a micropreemie that came with risks. The first year of preschool is hard for any kid. My older kids were sick every other week at preschool. By comparison Jonathan's been doing pretty good. He had croup, a cold, and now RSV/an ear infection this school year, but that isn't too bad.

But this reminded me of a few important lessons for you micropreemie parents:
1. RSV is no small thing! If it can kick a three and a half year old former micropreemie hard enough to hospitalize them for four days, then your younger preemie could be hospitalized even longer.
2. Lungs are still developing in infants and toddlers. Keeping their lungs safe from illness and infection now is helping develop lung strength for the future.
3. Isolation IS hard, but there's an end to it. It's worth the investment.