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.

Sunday, March 5, 2017

Heart Month/Trisomy Month

February has ended and March has begun.  (I'm told it happens that way every year, who'da thunk?)

Anyway, the effort for education and advocacy continues.

Still, today, in this country, families are told that their babies with Trisomy 18 and 13 won't live, can't live.  And some can't.  But other babies without trisomy also sometimes don't live, for a variety of reasons.  And many, many babies with trisomy are living.  

Then parents are told told that IF their baby lives, it will be awful, horrible, painful, a terrible existence, worse than death.  And that breaks my heart.

So that brings me to my goal for March.  Let me show you what life is like with Aaron.  It's not awful, horrible, not usually painful, and certainly not a terrible existence.  I've said before that if quality of life is measured by how much joy you get from life, Aaron's figured out the secret.  He's got it made.  It's not all roses, but whose life is?

This week has been a good week, a really good week for him.  I'm told that often it takes several weeks for a heart to fully respond to a new medication, and I think we're finally seeing some really awesome results here.  He's used less oxygen and been more playful than we've seen in a very long time.

There is a glitch of course (isn't there always?)  Remember back to the beginning of February when I talked about the blood in the trach?  Well, that resolved fairly well and I thought we were done.  But then on Thursday, it came back.  And it wasn't in response to suctioning.  He was gagging and retching, and suddenly, there was a lot of blood in the trach again.  A couple of catheters full of fresh, frank blood.  No bueno, at all.

So tomorrow he's going in for (hopefully) a quick scope of his trachea.  The concern is that it sounds like the trach is wearing away at the inside of his trachea, and since there are arteries in the area, well, 'nough said.  We need to make sure.

But still, he is so, soooooo happy!!!  So we're going with that.

Day 26. Inspiration. When I can't find my way, when I need more than I've got, I look to God and the Temple and remember how much He has already given me. 

Day 27. Joy. If quality of life is measured by the joy you find in the journey, Aaron has the best life of anyone I know. 

Day 28. Love. What else can I say?

Day 1. Life is beautiful (just like his shirt says).

Day 2. Trisomy awareness. Sleepyhead is NOT a morning person. But if you want a late night party, he's your man! 

Day 3. Trisomy awareness. "Hope is being able to see that there is light despite all the darkness." Desmond Tutu

Day 4. Trisomy awareness. Busy Saturday for this kid. A trip to Costco and to soccer to cheer on one of his favorite players! 

Day 5. Trisomy awareness. Got my smiles on for church! Happy Sabbath everyone!

The fight for the right to life is not the cause of a special few, but the cause of every man, woman and child who cares not only about his or her own family, but the whole family of man.

Mildred Fay Jefferson