We managed to get us all in the Christmas Cards. For the first time ever, I printed a newsletter.

Newsletter

We’ve never sent a newsletter with our previous Christmas cards. Signatures and sometimes a joke. But I think we can all acknowledge it’s been an exceptional year for the Wilcoxes.

As I write this, it’s been exactly 200 days since Asher had to go. When that anguish was fresh and raw, it wasn’t “had to go” it was “brutally ripped from our arms against his will and ours.” But after sitting with the pain for a while, we started to see reasons why we were actually very lucky things rolled out the way they did. Too many things to think life is a random chaotic meat grinder. Let’s start from the top:

• In 2018, when he had his first auto-immune response, the Dr on-call was the foremost doctor on childhood immune responses on the west coast.
• When he was discharged, they told us “We’ll never have this issue again.” This was obviously untrue (I don’t blame them) but if they had said, “He’ll be dead in a few years,” we wouldn’t have been as adventurous. We probably wouldn’t have gone to Ireland.
• We got to have (5) more years with him, symptom free. Those years included his personal transformation and our trip to Ireland.
• His second onset didn’t occur until after Ephraim’s birthday party (which happened literally hours before) and so it is not mentally connected to Ephraim’s birthday.
• The on-call Hematologist at the children’s hospital studied under the same doctor we saw in 2018.
• I work 1 hour ahead of the rest of my company, meaning I could take Asher to the doctors without getting in the way of my work.
• We recently moved from Caldwell to Meridian for unrelated reasons. But that meant the trip to and from the hospital was 20m, not an hour. If it had been an hour… Menolly might not have been able to come as often. I would have been away longer when I went to shower. And… when he was taken from Boise to Seattle via MediPlane, his brothers would have been too far away to say goodbye to him in person. It was the last time they saw him.
• My job let me disappear, with pay, for a very long time to be with Asher in the Boise and Seattle hospitals.
• I have incredible insurance. And that’s not just a financial consideration. Think about this: My son is sick. I want to take him to the hospital but I put it off because I don’t have good enough insurance or can’t afford it. He dies at home. Would I ever be able to forgive myself? Medicare for All folks. This should never be a choice people have to make. His total costs from both hospitals, $521k. My cost, $1,500. Medical care should be a basic right and the US health system is a tragedy of corporate greed. Vote.
• Someone in the new Meridian ward is a mortician AND knew me well enough to be frank and clear with how his body would be handled and what the process would be like WEEKS BEFORE HE PASSED.
• While his care was drawn out, his final moments were fast. The medication he was taking to suppress and reset his immune system essentially guaranteed he’d have cancer eventually. Your immune system kills cancer every day; the medication was never a permanent solution. But dying of cancer is incredibly slow and painful. He only had about 40 minutes from good to no good in sight. I’m grateful for that.
• My sister booked a flight to come see us days before Asher crashed. She booked it for the day he passed. I will always be grateful for having someone with me to drive home with. That would have been a long, lonely road.
• AsherCon was amazing. AMAZING! I had the skills, time, materials, machinery and human helpers to pull it all together. And (another good thing) because we were in Seattle, it took a lot of time to get his cremains back to Meridian. Giving us time to get folks together.
• There’s no blame for how his care or passing went. If I had taken him on an adventure and he died… well… let’s put it this way and say very few marriages survive that kind of passing. If the doctors hadn’t been top notch, I could have ruined peoples lives legally burning down the establishment out of rage for my son. Or let’s say he died in a car accident: Would the driver ever forgive themselves? Would we be able to forgive the driver? Because there’s no one to blame, the burden is on “the plan” or “the Planner.” And He can handle a little anger from His children.
• That’s not to say this has been easy. We miss him. So very much. And we always will. I was talking to a friend and I said, “The sharp stabbing, breath catching anguish of it is nearly gone. But I will always be a bereaved parent.” It’s easy to look at this and think the world is chaotic and evil. There was nothing we could have ever done to prevent his sickness, and when he did get sick, we did everything possible to bring him home.

But at what point does the static become a picture? All these little points of grace do seem to point to the idea, “Yes, your son is going to come home early. But… we’ll see what we can do to lessen the pain.”

I still don’t like that there was a plan which involved Asher going home early, but… I appreciate someone pulling the strings to soften the impact.

This year had more in it than Asher’s passing. We had a lot of good things too:

• Zeke got the chance to go spend several days and nights playing Dungeons and Dragons with his mighty crew. It was his first “real adult adventure.”
• Ephraim turned 16 and joined the, “I could totally learn to drive if I wanted to,” crew.
• Menolly took another full semester of college and decided, “This is not how I want to learn anymore, but it was fun.”
• Ephraim and Brian started taking Swamp Music lessons. Brian on the guitar, Ephraim on the banjo. We’re both getting pretty good at our respective instruments.
• Asher started a new D&D Campaign with a new universe inspired by some of the things he wanted to play with. Ephraim and Dad did most of the new world building. Asher also managed to convince one of his friends and two neighbors to join in.
• The house went through some serious changes. Paint, window replacement, eternal water heater, new pavers and a walkway, rock landscaping, trees got haircuts, raised beds and a brand new, “way bigger than we expected” pergola perfect for outdoor living. Oh, and we replaced the driveway too.
• We planted an Asher tree in the front yard. It’s a 3-in-1 apple. He loved Minecraft Mods and this is as close to “breaking the game” that horticulturists get.
• Ezekiel managed to thread the needle, land his fighter jet on the aircraft carrier, and graduate from high school! He’s also got a full-time job now which makes him happy sometimes and gives him enough money to afford an apartment (he still lives at home. It’s complicated. Shocker.). His senior pictures are amazing and mad props to the photographer. These were taken May 3rd, and she still managed to get real smiles out of him. I love those smiles.
• Menolly’s continues to make pot, but we’ve also connected with some great drug dealers who have hooked our whole family on drugs. Oh, and the headshrinkers. We see them.
• Which is to say, Menolly still makes pottery, but she’s been throwing with larger and larger lumps of clay and these carved platters and stuff which are really cool. Some day, we’re going to make a new urn for Asher’s ashes that has that classic Wilcox flare.
• The drug dealers (Psychiatrists) are great. Ephraim is responding very well to the ADHD meds. Zeke’s meds for ADHD and depression work well enough when he remembers to take them. Menolly and I are on the same set of drugs at different doses supplemented with Matcha in the morning for 80mg of caffeine (which is a great OTC neurostimulant).
• Our headshrinkers are people who specialize in grief counseling and CBT. “The friend you pay to listen and not judge. .” I think between that and the book The Unspeakable Loss by Nisha Zenoff, we might actually make it through this year. Tough to tell, only a few weeks left.
• We took Asher through the temple. Sure this was bittersweet, but it was a good thing overall. Plus my friend had to have brain surgery that same day, but it was a breeze and he’s doing much better. These two events are connected in my head. And I like that. This is the same friend who helped us “burn it with fire” referring to the intubation tube support Asher hated so much. It was quite a big fire. Asher’d be proud.
• The Year of Brandon Sanderson completed with some really fantastic books. If you’re a fan and didn’t invest in the Kickstarter to get access, hit me up and we’ll discuss your… uh… options… :-) In the same vein, we got to go to a lot of good movies this year so, good job studios.
• Ephraim got to go on not just one, but TWO solo trips to his Aunts houses. He flew all by himself to New Mexico and Alabama to spend a week at both places. He also went camping twice, but the 2nd time was cut short because of mosquitoes.
• Penny (the dog) learned to use a word board. She has three words, “potty”, “pets” and “play.” But… only one button gets used all the time. Play. There is only play. Would you like to play? Yes. Yes you would.
• Zeke bought his very first car! It’s blue and goes vroom. :success:
• We went to Universal Studios with a friend and got to see the new Mario World and Hogsmeed.
• Mom got to go to Denver and see a performance with her sister. It was her favorite Dancing with the Stars judge Derek Hough.

Four pages of good things for a year when we were kicked in the tenders.

I’ll say one more thing. We started these photos as a way to tell folks “back home” we made it to Texas and we’re still us. Well, guess what? We’re still here.

And all six of us are still in the Christmas Photos (dogs are people too).

We love you, and we know you love us,

The Wilcox Family