Colton's Friend, Akston

We've had a really sad thing we've been dealing with here these last few months.  I didn't really want to write about it here, but it also feels very wrong to not mention it, so here we are.

A little over a year ago, a friend of Colton's, Akston, began having trouble seeing and hearing.  And running.  His parents took him to every specialist imaginable and eventually he was diagnosed with childhood cerebral adrenoleukodystrophy, a genetic, neurological condition that is degenerative and incurable once in advanced stages.  Because it's genetic, the whole family had to be tested and they discovered that Akston's two little brothers also have it, although it isn't active in them yet.  Akston's actual words-- and this will give you a hint of what a special kid he was-- were, "I'm so thankful I have this so we can help my brothers."  As if this weren't enough to be dealing with, during this same time Akston's mom, my friend Kristen, also gave birth to twins, her fifth and sixth children (wonderful, happy news, but also, ohmygosh that's a lot).  The twins, thankfully, do NOT have CALD, and they were able to bank their cord cells in the hopes that they will help them to fight it off in their brothers some day.  Meanwhile, the other two boys will need to have MRIs every 6 months to watch for if or when it becomes a problem, and if there are ever changes, they'll have to undergo treatment that is basically like chemotherapy.  It's going to be awful.  But at least it isn't hopeless.

In Akston's case, there wasn't much they could do by then but just wait for the disease to take its toll.  Over the course of several months he lost his ability to see and hear, to walk and talk.  Finally when he couldn't swallow any more his family could only keep him comfortable until the end.  He died on the Tuesday before Thanksgiving.  And it's just been so sad.

I'm sad for Akston, but probably even more sad for his mother and father.  I can't imagine dealing with so much heartbreak.  I also can't imagine caring for your vibrant, active child and watching him go downhill so quickly, all while trying to take care of newborn twins.  I'm also sad for Colton for losing his friend.  And I'm sad for Craig who, as bishop, had to preside over the funeral of a 9-year-old.  

Anyway, as is often the case, in the midst of all this tragedy there have been some glimpses of absolute beauty and I would be remiss if I didn't write these down, too.

There was a primary activity right before Easter where the kids were running a 3-legged race.  At this point Colton knew something was happening with his friend, but of course he didn't really know what to do about it.  I encouraged him to partner with Akston and they had a great time.  After the official activity was over, the kids began running around playing tag.  When Akston got tagged, he couldn't really see the kids to tag them back, so the kids all began running close to him, holding out their arms and yelling, "Here I am!  Tag me!  Tag me!"  It was a beautiful moment of children at their best, working to make sure their friend was included, despite his growing disabilities.  

Another time, the ward gathered to do some yard work for the family.  (Their neighbor kept complaining that they weren't maintaining their yard well enough.  WHO DOES THAT???)  Because I suck at yard work, I went inside to try and help.  While I was dinking around in the kitchen trying to be useful, Colton and Gideon came inside and sat with Akston on the couch.  Colton and Gideon were being goofy and joking around and Akston was laughing with them.  He couldn't talk very well by then, but he said something that went along with their jokes-- I didn't catch what he said, but it was very clear that Gideon and Colton understood everything he was saying and they all continued laughing together.  I was watching and trying not to cry, because I was pretty sure this would be the last time they were able to do this.  But it was so beautiful and innocent and sweet.  Just three friends laughing together, boys being silly.

Colton, Akston and Gideon at Akston's birthday party back in March.

I mentioned that on Ryder's birthday there was a YWs activity that I was supposed to arrive at the church early for.  This activity was an idea of one of the girls, who thought we should offer to babysit for parents so they could do a little Christmas shopping.  It was a lovely idea that was not particularly well executed on my part.  The day before it was supposed to happen, my secretary was frantically texting me, worried that no one would show up and maybe we should just cancel.  I was overwhelmed with everything else, and basically told her to shove it (I think my exact words were "I can't handle this right now").  I decided that we were moving forward with the activity and if it didn't work out, then maybe we should learn to plan better next time.  Sometimes that's all I can do.  (Reasons like this are why I don't love being the president!)

Within an hour of that dust up, I got a text from Kristen asking about the babysitting.  She was going to be at the church setting up a memorial room for Akston's funeral the next day, and wondered if the Young Women would be willing to watch her younger kids while she did that.

So we were able to help out in one final way.  (And the YW got to swoon over how cute those babies are).  It was one of those rare times where Heavenly Father takes your puny efforts and manages to make them count for something, and I felt lucky to be a part of it.

Such good friends!

The funeral the next day was so hard.  I honestly can't remember the last time I've cried so much.  I was leading the music, including a children's choir mostly made up of Akston's cousins all singing "I Will Walk with Jesus," which I had taught to the kids a couple years earlier when I was the primary chorister.  Kristen told me she had a video of me conducting it and Akston just singing his little heart out, so she wanted me to conduct it for him once more.

Megan thought to take a picture of Gideon and Colton with some of Akston's favorite things.  They had another wall with pictures of him, and blown up sized posters of stories and things he'd said.  It was really very lovely. 

Anyway, you can read Akston's obituary here.  He was such a vivacious and sweet boy (and I feel like those two traits rarely go hand in hand).  I really can't believe he can be gone so quickly.  I've been so impressed with Kristen and Nathaniel and how they've handled everything.  I hope some day when I'm faced with terrible trials I can be half as brave and faithful as they are.