At The Intersection of Hope, Medical Knowledge, and Chronic Illness

July 27, 2011 by Rieshy

It's a low day.
A below day.
Another, "We don't know day."

I know better than to pin hopes on a new specialist.  Yet, even as I convinced myself that I hadn't really hoped, I found myself trying not to cry with disappointment in yet another flavor of pediatric specialist's office.

A least everyone participated in pretending that I was not crying.

Having a rare genetic disorder isn't good enough for my children.  They get to have a rare genetic disorder along an as of yet unknown biochemical pathway impacting unknown enzymes.

Yay us.

So round and round the traffic circle I go.  Medical Knowledge is blocked and (hopefully) under construction. I need to exit at Hope, but I keep just barely missing it.



Unknown said...

Oh Susan. Hugs.
I was so depressed when I couldn't figure out what was "wrong" with Shel, as a baby he wasn't progressing, he wasn't on the list of milestones, he was...potato sack-ish. I was so depressed. I was thinking about that this morning as I changed Tobin, who is super strong. Why was I upset when Shel was a baby? was it because I wasn't accepting him? NO, I think I was upset because low muscle tone wasn't good enough for him. In a small way, I get what you mean. It's so frustrating, and you want to accept everything and have everything work out, but you love your kids too much to accept it. Keep going around the traffic circle. I'll be praying for you. and them.
It's hard to have peace when you don't know what's going on with your kids...or how to fix it. I'm totally crying right now, this resonated so much with me. Hugs.
p.s. that little ditty in the beginning? Awesome. Awesome like A.A. Milne (i don't say that lightly)

Rieshy said...

Thanks- It's easy to forget how little we really understand about our bodies. So amazingly complex.

My rant helped me. Like Hagrid said, "Better out than in I always say." But prayers help even more.

Hopes Handcrafts said...

sorry it's been a bit of a frustrating day for you, Susan I burden shared is a burden halved {{hugs}}

julia (New Zealand)

Dana K said...

I'm sorry, Susan. That's all. I hope answers are found for y'all. The unknown scares me worse than anything.

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