Sunday, March 20, 2022

Trisomy Awareness and Uninvited Gifts

So I've pretty much missed it.  

Trisomy Awareness month and Trisomy 18 Awareness Day.

I didn't even remember to wear blue on Friday.

BUT, for us, every day is Trisomy 18 Awareness Day.  And I hope for my family and friends, they're pretty aware, too.  

For us, Trisomy means having more medical equipment than you even knew existed.  It also means having more love than you knew was possible.

It means measuring outings in battery power and oxygen needs.  It means measuring days by smiles and grins (and goofy jokes).

It means special needs schooling, IEPs, and evaluations.  It means bringing nurses into your home that become family and impact everyone's lives for the better, not just his.

It means learning a whole new language, new culture, new life.  It also means figuring out when you're 50 what you actually want to be when you grow up.

It means treasuring life beyond measure, and knowing you'll say good-by much too soon.

Trisomy is indeed the Journey of a Lifetime, not just his, but ours as well. 


Update on Aaron:  There are two reasons I haven't been as on top of things as I usually am this month.  First is school.  I am loving my Masters program, but it is INCREDIBLY time consuming!  I have been writing, TONS!  But my professors are the ones that see it and I don't think it's stuff the general public would find interesting anyway.  

The second is that Aaron is requiring a lot more care.  He'll have a good day or two, and then some pretty bad ones.  Friday was awesome!  The pictures are from a field trip they took.  He's still not as smiley, but he went swimming and bowling and had a great time. 

Now?  Well, he hasn't slept since his nap after school on Friday except for some 5 minute micro-naps.  He's fevering again, more today than yesterday.  We're using Tylenol and rescue meds and they put a dent in things, but that's about it.  

This is hard, really hard.  Emotionally and physically.  It reminds me of our first year with him.  We've spent 32 days in the hospital since January 14th over three different admissions.  Being admitted takes hours as they do work-ups and make decisions, while also attending to other patients ('cause you know we aren't the only ones there).  

It takes another four hours or so coming home.  An hour to get everything ready to go, an hour to drive home, and another two hours to get everything settled and taken care of here.  (Equipment needs to be changed out and meds processed and organized, etc.) I also had no nurse Wednesday night when we got home.  It doesn't happen very often, but Wednesday was one of those times when there was no one to cover.  So it was me.  By Friday, March 18, Trisomy 18 day, I had nothing left to give.  I made it through classes (somehow) and crashed hard.  

But we keep doing it.  We keep on going.  He's worth it, he's MORE than worth it.  Those smiles, that spirit.  Even when he's sick, it shines through.  In a conference for school this week someone referred to an "uninvited gift."  

"Uninvited."  Yeah, certainly didn't ever hope or dream of having a child who had to deal with so many challenges.  But he definitely is a gift, a gift from God.  

"Every good gift and every perfect gift is from above,
and cometh down from the Father of lights..."
James 1:17

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