Saturday, March 18, 2017

Trisomy 18 - Joy in the Journey

Once again, I've got way too many thoughts going 'round, and no idea how to organize them.

It's Trisomy 18 day again.  And yes, Aaron is still here.  It's kinda funny to tell people that he's "incompatible with life" and watch them try to work how how the way they understand the meaning of those words can possible fit what they see in Aaron.

"Wait, but isn't he..., uh, doesn't incompatible..., um..." and you can see the wheels turning as they try to figure out if incompatible means something other than what they've always thought.

Nope, that's what it means, and yep, he's alive.

Recently Iceland proudly announced that no babies with Down's Syndrome had been born in the last five years.  If you look deeper, it's actually nine.  None, and they're proud of it.  That doesn't mean they haven't been conceived.  It means they weren't born alive.  And those babies are considered to be "compatible with life."  Does that tell you anything about Trisomy 18 or 13?  Or other disabilities?  And there are many here in this country, many medical professionals, who thing that's the best thing for all these babies and their families.

I disagree, on so many, many levels.  As I've said many times, if you measure a person's quality of life, and their contribution to society in money or achievements, no, he won't measure up.

But if you measure it by the joy they give and receive, the ability to inspire others and influence for good, these children, these "teachers of our souls" have tremendous worth.

And if you believe in the divinity of man, of the human soul, the potential is infinite.

So let me share a couple of funny snapshots of his life.

A few weeks ago there was a BIG (at least in our home) game on TV.  BYU was playing number one, undefeated Gonzaga.  (Most of us bleed pretty blue in this house.)  It was a rough start.  At one point BYU was down by 18.  But they battled back and people started getting excited.  By the time it ended with BYU on top, there was lots of yelling and jumping around and happy faces.  And Aaron was going right along with all of it.

He was laughing and smiling and waving his arms around, really getting into things.

And then Aaron went over and said, "you do know that was BYU and not Utah, right?"

It was like someone threw a switch.  His face went dead, no laughter, just a look of "you're kidding, right?"  Someone had just rained on his parade.  Oops.

When he was tiny, we asked someone where the handicapped parking was because we had a disabled child in the car and the seven-year-old piped up with "who's disabled?"  When he thought about it, he knew, but that wasn't something he ever really considered.  Aaron was just another brother.

About the same time, our four-year-old was looking through his own baby pictures and was trying to figure out how we hid his tubes and wires, 'cause that's what babies have, right?  It's just the way it's done.

And then last year, that four-year-old now nine years old said he was hoping someone he knew had a baby with T18.  When I asked why, he said it was because then they could have a great younger brother like him, and the family could have someone special in their home.

These kids, these kids whose lives I was told would be ruined (yep, I was told that) by their younger brother, have grown so much.  Their lives have not been ruined, they've been enriched.  All of ours have.

This past week, he's had some struggles.  I'm not sure what's changed exactly, but his lower GI system has slowed down again.  And when he gets "backed up" it puts pressure on his diaphragm and his lungs.  That leads to not breathing well, that influences his heart, and so on.  Fun times, let me tell ya.

I'm not the one you want to watch a medical drama series with.  I always laugh in the wrong places.  Music gets dramatic, voices get upset, and I'm laughing, 'cause I'm sorry, ain't nobody in a hospital gonna worry about oxygen sats at 90%, and they're certainly not going to intubate, bag them and put them on a ventilator.

Goofing off at school this week
But when your kid is having trouble getting out of the lower 70's on 12-15 liters, you start getting a bit worried yourself.  Except he's acting like me watching med shows and belly gut laughing.  I mean, how do you call 911 with that?  He's thinking it's the funniest show on the face of the earth.  Stinker.

There were a couple days like that, but he seems to have settled down now.

And today we'll be all wearing blue, even those who are playing on non-blue sports teams have blue fabric tied on their arms.

Let's see if we can turn things blue today.

Let the world know about Trisomy 18, about the good things, that it doesn't have to be incompatible with life.  And it certainly can be "compatible with joy."

Let us relish life as we live it, find joy in the journey, and share our love with friends and family.

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