Sunday, October 8, 2023

Fall, And Some Hard Times in the Trisomy World

How has it been four weeks since I wrote??

In the meantime, he weathered Covid, finally is getting to school, and overall is doing well.

I won't lie, Covid was rough.

He did okay vitals-wise, but he was miserable, except when he was sleeping (which was a lot).  Even when he was sleeping, it didn't seem restful. This poor kid really wasn't happy. It did earn him a trip to the ER one week in when he started having fevers but everything came back okay (it never comes back great) so we headed back home. 

He is going to school regularly at this point. It only took him about a month to get his act together and get there.  I mean, he went three days and went to the hospital for five days. Home for three days, but not back in school because he was still in pretty rough shape, and then admitted again, this time urgently for another week. Here's where we found out that the antibiotics we've been relying on to keep his colonized bacteria from going all rogue on him have given up and deserted to the enemy. Or at least laid down and surrendered. Or something. Anyway, they don't work anymore. (That makes me just a bit nervous and on edge.)

But he made it to his brother's wedding reception on Labor Day and to school for the next four days, and then Covid. So by the time he was better and going back to school, it was September 19th, four weeks after school started and he had only gone 7 times. I mean, good thing this kid doesn't get written up for excessive absences, right?

But since then he's done well (quick, find some wood to knock on!). Yesterday he went to his niece's 4th birthday party and another family gathering the week before.  After we got home, he hung out with us outside as we worked on putting a fence in. He enjoyed the fall air as we sweated out trying to get holes dug. (It's going to be great once it's done, but like most projects, it's taking waaaaaaaaay longer than I had anticipated. Fingers crossed that it's done before the snow flies.) 

But this week, these past few weeks... Well, they've been rough on our Trisomy community. In a lot of ways, most weeks are hard. I mean, the reality of this life is that our children do not live as long as most other kids, and especially the little ones seem really fragile. But once they reach a certain age (and I don't know what that is), they seem more hardy. Or maybe it's the hardier ones that reach that age? I don't know and I don't have the bandwidth to explore that part. 

Anyway, we've lost some of the older ones, and pretty suddenly. Two girls, 22 and 16 just a couple weeks ago. And this week it was Lane.

Lane was almost 15 years old. Do the math and he's about a year and a half older than Aaron. His parents have advocated for him, and so many others including us, this whole time. He is the reason I know to list phenobarbital (a frequent first line rescue drug for seizures) as an allergy. It's not really, but for a long time we were on another med that the two were contraindicated for.  And I don't mean it would cause a minor issue. Together, the two would cause the heart to stop. Not good. And while Aaron doesn't take that one anymore, he is on a cousin of that heart med, so we still keep it listed as an allergy.  

Lane, and Zane, and Patrick, and Lance, and Nolan, and Caleb, and others are the ones I've looked to over the years for hope, and their moms are inspiration for what I can do. 

And they're all gone. 

It hurts when anyone loses a child. But when those who have been around longer than you, when you're one of the oldest boys now left in the world! it's hard! And it hits right in the solar plexus. It's hard to breathe, to focus, to move forward. He's not even mine. It just feels like it sometimes.  And in the back of my brain, that little voice that I try to silence and shut down, gets just a little louder. "How long until it's my turn?" Because Aaron is getting tired.  It takes longer for him to recover from illness.  He sleeps more.  Please don't misunderstand. He's still goofy and happy and loves school. But it's harder for him. His heart and lungs are getting sicker. 

So I cry, and I pray. (And I worry and I scheme.) I call down the blessings of heaven on Lane's family, and on the rest of us. Because they are so needed.  But aren't they always? For all of us?

“So long as we live they too shall live and love for they are a part of us, as we remember them.” 
~ Gates of Prayer

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