In medical literature, babies with Trisomy 18 are "incompatible with life." Our precious son, Aaron, defied the odds, not only living, but thriving and loving his life. He passed away 13 years, 6 months and ten days after his birth. This is an effort to share his joy in his journey. Like the little purple pansy, he was tiny, but strong and still brightens his corner of the world.
We almost didn't make it to the Primary Program on Sunday. Saturday evening was a bit of a mess for Aaron, and frankly, I ended up shooting in the dark trying to pull him out of it. Fortunately, it hit the mark (somehow).
Saturday day was pretty darn good. He watched football with his brothers and supervised me in the kitchen. But that evening, he started to struggle.
And by "struggle" I mean, he didn't have any desire to keep his oxygen sats above 80. In fact, mid-70s were where he wanted to hang out. Um, no bueno.
We tried everything. I bagged him, and unless we were actively bagging, he was down in the low 80's. Normally, once we get him up, we can leave him on the bag (oxygen flows at 100% through that) and he does fine. Not this time. So we bagged in some albuterol, using the bag to force it into his lungs.
I should say, we had already given albuterol a few times, twice during the BYU game (apparently he couldn't handle the excitement of them trouncing their opponent. Maybe we should have watched Utah instead).
We changed his vent to secondary settings (more support).
I put him on the big tank for a while.
We changed the trach.
Bagged him some more.
Vented his belly (which did help a tiny bit).
Kid!!!
Finally, I gave him a "stress dose" of lasix. I simply couldn't think of anything else. His lungs sounded good. He was laughing at me, for Pete's sake!
He peed. And he peed. And he peed some more.
And we finally gained some ground.
He made it through the night and was doing better by the morning, so he got to go to church.
But today, well, just as church started yesterday, I started wiping his nose. And we're now on "snot patrol."
The fun goes on.
"Life gets more interesting as it goes on. It becomes fuller because there is perspective there."
Yesterday was the annual children's program at church, the Primary Program. It's presented by children ages 3-11. They sing and say lines regarding what they've learned.
And Aaron has never participated.
Oh, they've asked him to, but it seemed to be a bit pretentious. We had no way of really knowing, or even guessing, what he'd like to say. But this year was different.
This year he has his Tobii.
This year he can tell us his thoughts, feelings, and goofy jokes. (I was a little worried that the last might slip in.)
So two weeks ago, I spent the day creating boards with church vocabulary and symbols, and then he and I worked to figure out what he wanted to say. He kept coming back to Heavenly Father and Jesus and his family. (And lots of times he would name family members over and over, but there's a lot of us, so we just did "family." He couldn't hog the whole time. 😁
In an effort to have some control over what he was saying (you know, that joke telling thing), I created one board just for his part in the program and tried to make it as foolproof as possible.
And I was kinda nervous. Would it work? Would it touch people, or would they think it was an attention getting thing? Would it take away from the focus, which is on our Savior?
Yesterday came with a whole host of emotions, but overwhelmed wasn't the one I was ready for.
Opening hymn: "I am a Child of God." Oh boy, and I was leading the congregation. That one is a special one for us (and many others). It's the song I've sung as lullabies to my kids. The one I've used in so many emergency rooms as we've waited for stitches, broken bones, etc. The tender prayer as I've held them before or after a surgery. And the one thing I simply could not get through when Aaron was tiny and I was still waiting for him to die.
It's also the basis for my testimony. I am His child. He sent me here to earth to learn and grow, and I need help to do so. I have many needs, He loves me, He wants me to return to Him and receive all He has to give.
Yeah, not able to sing that one, so I mouthed it instead of singing and hoped I wouldn't completely break down. I didn't. Much.
The sacrament hymn was "Come, Follow Me," another sweet reminder of what I'm supposed to be doing, to whom I look for guidance. And then the program started.
It was actually kinda hard for me, watching those kids. Aaron actually isn't around kids his own age much, not typical ones. And even the youngest ones are more developed and advanced than he is. There is such a huge gap between him and his peers. Most of the time, I simply ignore it, but that wasn't working so well for me yesterday.
Then they sang "I Will Follow God's Plan for Me," and I really struggled to hold it together. Aaron's life is a gift and has a plan. It's so very different than other kids' lives, but it's his and has so much worth. And I'm supposed to maintain my composure through this??
When we got to Aaron's part, I was nervous and overwhelmed, and it was all I could do to push the button on the part he and I prepared together. And his little computer voice rang out:
"I love Heavenly Father and Jesus, and being with my family."
And I hid my face as I put his computer back down, wiping the tears. Each song continued to speak to me, although perhaps not the way others thought it might. "I'll Walk With You" seems to refer to a handicapped child who can't walk or talk like others, but my thoughts turned to some of my students and other kids I've known who don't seem to quite "fit in" and I remembered again that I need to be there for them and with them.
I was so touched by the Spirit yesterday, so many reminders. I will try to follow Him, to be like Jesus. And I hope that as I do so, my life's plan continues to develop and unfold, and so grateful for Aaron's job in teaching me to feel His love for me.
My life is a gift; my life has a plan.
My life has a purpose; in heav’n it began.
My choice was to come to this lovely home on earth
And seek for God’s light to direct me from birth.
I will follow God’s plan for me,
Holding fast to His word and His love.
I will work, and I will pray;
I will always walk in His way.
Then I will be happy on earth
And in my home above.
(Okay, this is already too long. The "challenging part will have to be part 2. Hopefully I get to it soon??)
We were six weeks, six weeks! from the one year anniversary of our last admit. (July’s CT doesn’t count in my book, less than 24 hours.)
I thought we might make it, but nope. He’s here.
It started last week, about Halloween. He was tired, so tired. And his diapers were loose. And his heart rate was higher, about 20-30 beats per minute higher than normal. No fevers, not yet.
But he pretty much slept almost round the clock. He’d wake up for a little bit, and go back to sleep.
By Saturday, I told William that if it continued, I was calling his doctor on Monday. But then Sunday came.
Sunday was awesome! He woke up laughing. He played, he talked, he teased people. He didn’t sleep much at all, just a really short nap before dinner. I figured everything was good again.
Monday morning though was a different story. I woke up and found his bedding and clothes in a plastic bag. What? When I opened it, I realized why, and was grateful his nurse had bagged them. He’d had a massive blowout during the night, and then another smaller runny diaper before morning. His heart rate was up again. Not good.
His nurse texted me about 9:30 and he was running a fever, very sleepy. He used his computer to say he was tired and sad and cold and happy. (Yeah, I think this kid is always a bit happy.). Obviously, things weren’t going well. I picked them up from school and tried to feel his belly when I got them home. He was guarding, tensing against pressure, so we made an appointment with his ped.
And they sent us up here for a work-up.
The reassuring part is that with his ultrasounds and x-rays, it didn’t look like we needed surgery, which was my biggest worry. Appendicitis is kinda a long shot as are some other intestinal issues like malrotation and that kind of thing. But the consequences of just assuming it’s not that can be catastrophic.
There is something going on, and we’re still trying to figure it out. It might just be an intestinal virus. He’s still so very tired, although he did finally wake up about two this afternoon and start playing. We put him on gut rest with only slow running Pedialyte for until mid-day and then gave him half Pedialyte and half food. We’ll continue that for the rest of today and try to restart his normal food tomorrow.
It’s looking like this will be a shorter stay. I hope so. And I’d really like my happy, interactive, silly bug back.
“Sometimes superheros reside in the hearts of small children fighting big battles.”
I'm sitting here writing with my arms full (almost) of baby girl.
It's "almost" because she's a very tiny, not quite six pound bundle of precious. Miss Linnaea Mae joined her parents a few days before her mom's birthday in October and is the cutest little thing you ever saw.
And Aaron? What does he think? Well, we introduced the two of them when she was about ten days old, and he didn't seem too into her. But the next day at school?
Teacher asked how his weekend went, and instead of using the page he was supposed to for answering, he navigated away from there, through two other pages and started talking about meeting a baby, and it was a baby girl!
Today at church, he continued talking about the baby, asking about the baby, where is the baby girl. Yeah, I think he's impressed.
He's using his computer more and more.
Last weekend, he had all of us cracking up. He was, too! He was telling us,
"tomorrow at this time it will be Monday, Terrible!"
And then he started calling out countries, "Puerto Rico, Cuba." What? Andrew mentioned that he wanted to go to China and someone else suggested that with the tariffs and all, they might not be so fond of us right now. And Andrew replied, "Yeah, but pandas." Aaron chimes in with "I love China!" And he would laugh hysterically after each comment he made.
You know how you can laugh so hard you cry and can't breathe? Yep, that was Aaron. And so, yeah, we had to use albuterol because he literally couldn't breathe. Silly kid gave himself an asthma attack, and acted like that was funny, too! Sigh...
I've said it before: He's a nut.
“A baby is God’s opinion that the world should go on.”
