Friday, February 20, 2015

This weather has got to go

Let's be honest.

I've not seen the sun for more than moments in two months. My doc was so alarmed by my vitamin D deficiency that she called a prescription dose of it in to the pharmacy. I've gone to events just for the purpose of getting out of the house. I spend hours trying to get the online system from J's hospital to work so that I can read his test results as he struggles with morning lethargy and vomiting.

The system still doesn't work. I even called their support services. Turns out that when I click on labs, it tries to send me all the labs at once. With a kid like him, that's enough to cause any computer to time-out.

I told a doctor friend about the new tests JAM was getting. He immediately understood what the endocrinologists are testing for, so he gave me a new term and enough information for me to start on an online search of medical journals for answers again. I know I shouldn't. I know I should just wait. But information seeking is cathartic for me. It tells me what I know and what I don't yet understand. And I still don't understand JAM. Again we wait in the hard limbo of wanting answers and not wanting THESE answers.

I worry and I cry and I am ready for the cold winter to be over.

I am still glad he's in isolation.

But being a parent of a medically complex child is difficult. JAM is a delight. The cares and worries that surround him are worth it.

We're used to all the other stuff now. now. We don't bat an eyelash when we have to take out an emesis bag after he's stuck with a needle. We aren't afraid of gavaging in public. Getting blood draws is still hard, but we've toughened for the most part. Two times ago, J actually just sat and watched as they drew the blood. A squeak at the needle poke was his only protest. Last time they missed on the first try, so they had to draw blood again, and he wasn't so happy.  As they searched for a second vein, he wailed "AGAAAIN!?" and proceeded with crying and "mommy! ba-ba! [bad, bad]"

It is hard, but it is worth it. We are waiting for answers again, and my soul's as cloudy as our sunless sky.


for the sun to come out again.
Storms always come
but they blow away with the wind.
for the sun is coming again...

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