Monday, November 20, 2017

So Thankful...

This is a thankful tree I drew on our big dining room window
to help us focus on our blessings.

Aaron is doing well, like really, really well.  Not sure I should have said that out loud, but I did.  I need to document the good times as well as the rough ones, and if I'm afraid to admit the positives, they get lost and all we have are the negatives.

What's made the difference?  I really don't know.  We've made several changes, all of them small, so I couldn't say for sure.

I've made some changes to his diet.  Turns out that even the natural sugars in fruit can influence inflammation.  But you also need some of the nutrients that are only in fruits.  So I've cut back on his fruit and included more veggies.  I've changed his non-dairy milk to mostly hemp or flaxseed from almond to help with balancing his Omega 3 and Omega 6.

I cut out one of his asthma meds.  Yeah, a little nerve wracking.  I looked back through notes and we really didn't see any improvement when he went on it, and it made him feel sick to his stomach.  But I'm watching very, very carefully.  It's been two weeks, but it's a long-term maintenance med, so the next two to four weeks will be telling.

And we've tried to have him up and about more.  There's a scripture that says "by small and simple things are great things brought to pass, and small means in many instances doth confound the wise."  (Alma 37:6)  Now, I don't begin to profess that I'm wise, far from it.  But hey, whatever it is, it's working!  And I'm grateful.

And he's definitely been out and about a bit.  You know, last hurrah before locking down for the cold/flu season and all.  Big brother Michael had a merit badge powwow down at BYU on the same day that David was playing soccer and Jonny was dancing.  You know we had to do it all, right?

Andrew was in Timberline's show "The Best Christmas Pageant Ever."  It's the story of the town hoodlums taking over the church Christmas pageant.  Wonderful tale.  If you haven't read it, I highly recommend it.  Written on a grade school/middle grade level, it's an easy read with a great message.  Here are three of my own hoodlums afterwards.

Then there was a trip to Shriners for a wheelchair check up where Aaron was fascinated by the big fish tank, and thought Mike and James were hilarious. 

And last weekend we were privileged to attend a Star Raising Party for a special little girl.  She and Aaron have been hospital buddies so many times.  Her mom is part of my "posse" and last April we were even paired in the PICU.  That was a tender mercy for me.  I was working full time so I wasn't there during the day.  She lives down in Delta, quite a haul from here, and had her five-year-old son with her.  So she slept at the Ronald McDonald House during the night and was at the hospital during the day.  I slept in the PICU and was gone all day.  We both watched out for the other child and kept tabs on things for each other.  It was a huge comfort to me to have Mary Beth there when I couldn't be there.

On Sunday, we heard about being grateful.  (I mean, whoda thunk it?  The Sunday before Thanksgiving, right?)  Anyway, one of the talks really resonated with me.  She spoke about how we have a tendency to drink out of the Bottle of Bitterness instead of the Goblet of Gratitude.  And she was right!  I think as a society we tend to focus on what's going wrong, instead of what's going right.  We complain when things aren't following our plans, going according to our specifications, aren't fulfilling the dreams we had.  We drink, gulp, and sometimes downright chug that ol' bottle.

But how much better if we can focus on the good, because there ARE a lot of good things happening.  The world is reaching out to others, charities are helping so many.  Neighbors help neighbors, kids pitch in and help.  And some of them even think that breathing might be an okay activity.  We introduced Aaron to the piano last week.  Yep, should have done that a long time ago.  The kid loves music.  He wasn't quite sure what to do at first, but he's getting the hang of it.  The old cause and effect thing.  And to help you smile, here's a short bit of his debut concert.  Gotta love this bug.

 Those who set aside the bottle of bitterness and lift instead the goblet of gratitude can find a purifying drink of healing, peace, and understanding.
Deiter F. Uchtdorf

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