Thursday, November 2, 2017

The Boy Who Lived

Sleepy boy.
Once again, way too long since I wrote.  Sigh....  Sorry.

I actually didn't think it'd been as long as it has been.  Thought I'd written since we came home.  I guess that part never made it out of my brain and onto the paper.  Again, sorry.

So when we last left our brave hero, he was hangin' out, partying in the PICU, 'cause you know, he's sure that's the happenin' place to be.  And besides, didn't you know?  Breathing is for wimps.

Leaving Primary's on Oct 21
We actually managed to escape that Saturday, the 21st.  So we spent most of our fall break in the hospital.  Someday we need to have a talk about same-day procedures that turn into multiple PICU days.  Someday.

Anyway, while I don't the final, final numbers from his heart cath, there are some things we do know.  We know they're not better.  In fact, they're worse.  How much worse?  I don't know.  But worse.  We also know that each time he goes under general anesthesia, it's harder for him in recovery.  In April, he ended up back at Primary's a few days post-op and we were there for a few more days.  This time, he only lasted a few hours on the floor before being transferred urgently to the PICU where he stayed for 48 hours.  Then we continued to battle things here at home.

Coming home on Saturday was more a testament to how much equipment and knowledge we had here at home than it was to him being better.  All in all, it was pretty much ten days before he was back to baseline, from a "same-day procedure."  That in and of itself is very telling.

So unless things change (hope springs eternal, right?) he won't be having any more trips to the OR, not unless it's absolutely necessary to preserve his life.  Because facts are, it will threaten his life.  We've gotten to the point where it will be difficult for surgical benefits to outweigh the risks.

Our "Boy Who Lived."
And FYI: waterproof mascara and a paint
brush work wonders for non-smearing scars!
So on to this week.  Tuesday was Halloween and Aaron went as "The Boy Who Lived."  I thought it quite appropriate.  Still pretty wiped out from his "fun" two weeks prior, it was hard to get smiles.  But he seemed to enjoy himself at school.  By trick or treat time, he was struggling and then fell asleep.  That's also probably something that's now in the past.

Sometimes it's hard, really hard, to look at him and know where things are headed.  But then I remind myself that we've lived with this uncertainty for over seven years, and he keeps on surprising us, rallying, smiling.  William and I were talking the other night, and I realized that if I spend my time mourning now, I'll miss out on some great times.  The time for mourning will come, is coming.  I don't know how far off it is.  I'm still hoping, holding out, for years.

Back in 2013, he and I had a talk, and I told him he had to stick around for at least 13 more years, until Michael gets back from his mission for the Mormon church.  And then at that time, we could renegotiate things.  The kid rolled his eyes at me.  (I'm not kidding, he did!)  It's been four years.  He's got another nine before we even talk about this again, and I'm going to do my best to hold him to that.  But if it doesn't work out, if his time is shorter, I want to remember all the smiles, all the joy, all the laughter I can.  And while pain and sorrow do touch it, I don't want that to be the overriding theme.
Blowing raspberries during a cold soccer game.

My kids will tell you that for the four months before he was born, Mom cried and researched, researched and cried.  I don't want that to be the kind of thing they, or Aaron, remember for this part.  So we'll do what we can, when we can.  We'll bundle up and make the soccer games, dance competitions, and other things.  We'll avoid crowds during flu season as much as possible, but still get out.  He'll go to school, learn, play, make friends.  We'll cram as much of life and love into whatever time he has.
Life is Beautiful!

And yeah, if you continue reading, you might be subjected to some of the darker thoughts.  It's how I process.  Please don't pity us.  Pray for us, but don't pity us.  We've got the most wonderful teacher living right in our home, right here.  Be glad for us.  Being able to have this angel in our home, take care of him, love him, is an incredible blessing.  And no matter the pain that will come, I wouldn't trade it for the world.

Our own little miracle, our "boy who lived."

I can shake off everything as I write: 
my sorrows disappear, my courage is reborn.
Anne Frank 

1 comment:

  1. I like to think of my daughter Lily and Aaron as besties, even though they only met in person twice. Rebekah and I, though... our journeys have overlapped much, much more.

    Lily and Aaron used to chase each other in and out of the hospital; I can't remember how many times I knew we were in the ER waiting for the room Aaron was packing up and leaving. Aaron is still more like Lily than any kid I've ever known.

    I can't remember our journey without Rebekah, but now, I know it without Lily or rather, after losing Lily. And Rebekah has been there through everything.

    I can't imagine the strength it takes to attend the funeral of a child so much like your own, but Rebekah was at Lily's. She attended the luncheon afterward and sat next to me. She was there the first time I saw Lily honored in as an angel instead of a warrior and held my hand.

    Lily was born 27 days before Aaron, and for the 27 days after she died, Rebekah and I were both holding our breath and praying Aaron would not feel compelled to follow her so closely.

    No one expected Aaron to outlive Lily. She died suddenly, one last cold pushing her body past what it could recover from. I think I told Rebekah what was coming before I told my own mother.

    Before that cold, we'd been fully living. We'd been making memories. We'd bought her a wheelchair van. We'd won the battle for the medical bed that would last her clear into adulthood. We were building a wheelchair accessible house. She went to school and loved it. We even added to our family; Lily shared eight beautiful months with her little sister before she died. We made so, so many memories.

    Not long before Lily died, she and her baby sister were playing in her bed. Lydia was crawling on her and tugging on her vent tubing attached to Lily's trach. You can't tell how uncomfortable that is. Instead, Lily gave a huge grin showing off all her dinosaur teeth that grew in crooked because she so fully adored playing with her baby sister.

    Like Rebekah, I had a season of mourning when I came to realize the depth of Lily's conditions. I am so glad that my family doesn't remember that time. Our friends don't really remember it either. Instead, we are surrounded by people who knew how much Lily loved her sisters, loved school, loved her parents, everybody, and just life in general.

    I don't regret this at all, but I'd sure regret replacing it with pity. So please join me in hearing the dark, the twisted, and then focusing on the joy of this boy who LIVES.