Sunday, May 23, 2021

An Emotional Week

It's been a bit of an rough week for me, and I wasn't really expecting it so much.  

I've been on edge since our last doctor's appointment.  It was hard.  It's still hard.  This is where the doctor told me Covid would kill Aaron.  Straight up.  Not that it would be hard, might be difficult, could be a problem.  It. Will. KILL. Him.  

And that coincides with everyone around deciding that it's all over and life is normal again.  No masks, no distancing, the last 16 months have just been a really bad dream.  CDC says now that fully vaccinated people don't have to wear masks.  Less than 1/3 of our state has been fully vaccinated and no one under 16 has been.  But I see masks on less than 10% of people.  This is HARD for me.  

I've always loved being with people, enjoyed crowds.  I know there are people who don't, but it's something I've thrived on.  

I'm struggling. I'm having to walk out of rooms with a lot of people in them.  I'm practicing breathing exercises.  But I'm trying.  My family will continue to wear masks.  We've seen their benefit over the past almost 11 years.  We've had all sorts of flus and colds run through the house.  I got pneumonia (twice!) from the flu and spent most of the first six months I was subbing sick.  Aaron didn't.

I'm being forced to focus on the lessons I'm learning.  I lean on the Holy Spirit at church, focus on the messages and the music, and try to calm my heart.  

And that was the start of my emotional week. 

Thursday was Aaron's school dance festival.  Every year they put it on. But this year we were missing his principal.  She was an amazing advocate for her students, and a friend as well.  I knew it would be hard without her, but I didn't anticipate crying before it even started.  Most of the dances were dedicated to Kim, and I know she was there with us.  

But the part of the week that caught me off guard was Wednesday.  Wednesday, Michael was vaccinated.  I think I was mostly excited for my shot back in January, and grateful when William and Andrew were able to get theirs.  

But Michael represents that those who are closest to Aaron are all going to be protected.  Those who interact with him daily will have a much smaller chance of bringing it home.  

Yeah, I cried.  And then again as I saw the giant wall where people had posted their
thanks and their reasons for being vaccinated.  There were some funny ones, and some poignant thoughts.  And it touched me that while there is a lot of pushback and vocal noise going on, there are also many who are stepping up and helping out.  

I know Aaron's days are known to God.  I know he has been protected thus far.  And I also know that those days will come to an end, long before I want them to.  It is His plan, and I do trust it.  

But believe me, when you watch someone struggle to breathe, when you see them change to that ugly blue/gray of someone not oxygenating, when I think about what life will be like without my son, I simply cannot not do everything in my power to protect him.  And so I cried out of relief on Wednesday.  

Michael's card says, "My brother"

Lots of people my age are joking and laughing about the "empty nest".  I used to dream of those days as well, especially when I felt like I caught myself coming and going at the same time.  We're almost there.  Next fall I'll only have two kids at home:  Michael who will be a sophomore in high school, and Aaron.  But to get to our empty nest, we'll have to bury a child.  

There are lots of "lasts" right now, the last day of middle school and the last day of high school.  We've been to our last high school choir concert, and our last middle school anything.  I watched my last soccer game yesterday.  These have been fun and a little bittersweet.  

I don't even want to think about the other more permanent "lasts" that are coming...

 “The two hardest things to say in life are hello for the first time and goodbye for the last.”
-Moira Rogers

Thursday, May 13, 2021

Can't Cheat Karma

 Yesterday was a long, rough day, although Aaron's smiles were out in full force, so there is that.  We spent all morning with the comp care clinic and then were seen again by ENT in his clinic so he could clean out Aaron's ear and get a good look at the ear drum.  No ear infection, labs all looked good, so it probably is disease progression. We have a tiny bit of room to go up on his Ventavis (a heart med), but that’s about it. I did talk them into a bigger trach, 5.5, but it’s going to take time to get it. No one seems to think that will help, but I’m clinging to the idea that it might. This is about where we were 2 years ago when I talked them into a 5 from a 4.5, and it made a world of difference. So hoping...

Really, there are no good answers.

The bright spot of the day was Shriners where they’re putting in for a really sweet motorized wheelchair. He’s just gotten big enough and has enough equipment that it’s getting pretty heavy. It's going to be a really sweet ride. He'll even have a control joy stick that he can use to move the chair. We'll also have an override where we control it. You know, keeping walls intact and all.

And then the icing on the cake was the trip home. One of my biggest fears is breaking down w/ him in the car. And yep, of course... Fortunately, I had made it to Highland so our awesome LPPD was really helpful. They changed out my flat, but

then the donut was pretty low. Tried to make it back to their locked yard for air, but then the tire came off the rim as we pulled in. So ended up having to call AAA for a tow, my son came out to get Aaron and I, and we had to transfer everything to the big van. And now I’m trying to figure out tires, again. (Just last week I replaced my front tires and rear brakes because they were really worn and I didn’t want this exact thing to happen.) It was like Karma said, “oh yeah, you think you can outwit me? Joke’s on you!”

Can I just say it was a rough day?

"Some things in life are too complicated to explain, in any language
- Haruki Murakami.

Tuesday, May 11, 2021

I Won't Give Up, I Can't Give Up

Just over ten years ago, I sat in Aaron's hospital room and Skyped with my parents in China.  We'd just learned that Aaron couldn't breathe on his own.  Our only choices were to trach him or let him die.  In my mind, it really wasn't a choice.  

As I explained things, my dad very gently asked me if I would ever be ready to let him go.  I paused for a minute, and then said, "no, I don't think I will be."  He just nodded and said, "that's a good thing to know."  

Here we are, almost exactly 10 1/2 years later, and I'm still not ready.  

It's been a really rough few week around here.  Really, it's still pretty much the norm for us, but Aaron has had more and more episodes where he's needed significant intervention.  I think there has been one day (Saturday maybe?) where we haven't had to bag him, and most days it's at least a few times.  He's getting his "rescue" med, the one that's only supposed to be used occasionally, around the clock, as often as every three hours.  His digestive system is also not working as well as it should.  Things aren't "moving" they way they're supposed to.  But when you're having trouble with oxygenation, it affects every system.  Kinda funny how they all rely on that good ol' O2.  

I really don't know what's going on.  I'm kinda hoping that when we're seen tomorrow, they discover a really nasty ear infection.  That would explain a lot of things.  We've also started giving him Tylenol and Motrin to see if that helps, and it seems to, so maybe...

But I've also spent the last several days doing research again, trying to make sure we're looking at everything.  His awesome ped, Dr. K, called in x-rays and labs yesterday.  The good news is they all look pretty normal.  That's also the bad news.  

Tomorrow we have our first in-person trach/vent clinic since the pandemic started.  They offered us tele-health or in-person, but with everything he's got going, I wanted eyes and hands on him.  

So I've got my list of questions and ideas.  After getting off work at 1:30 tomorrow morning, we'll be out of here about 6:30 am.  Yeah, not much sleep, but that's the spot they had open for us.  I'm grateful for doctors who will listen and explain things, and I'm really praying that we can come up with a plan that will make him more comfortable.  And breathing better would also be good.  He deserves it.  

Here's the latest picture of our family, and probably the last one for a long time.  Jonny and Avanlee leave for Saudi Arabia tomorrow, a year later than they hoped, but still too soon for me.  I'm excited for them, but oh boy, we'll miss them.  And then Andrew leaves in July for a two-year mission for the Church of Jesus Christ of Latter-day Saints.  I keep saying I didn't realize when I was having these babies how much it would pull at my heart strings when they left.  I wouldn't keep them.  They need to go out on their own, but it's definitely bittersweet.  

“You do what you can for as long as you can, and when you finally can’t, 
you do the next best thing. You back up but you don’t give up.” 
Chuck Yeager