Life and Death, Death and Life

Future so bright, he's 
wearin' shades.

Years ago, when Aaron was tiny, a doctor told me that if he lived, I would get to the point where I was planning for life instead of waiting for death.  I didn't know what that would look like, but it crept up on me and moved in.  I realized when I was waiting with Michael to catch the kindergarten bus and thinking about Aaron's school bus experience, that I had made that change.

But still, death lurks, sometimes hidden more than others, but always there, waiting, in the dark recesses of my mind.  

I haven't written lately not because there hasn't been anything to say, but because there's been so much, and much of it is hard to process.

I've been to more funerals for children than adults in my life, and that's saying something.  

But child or adult, each one leaves a hole, a giant hole in the lives of their loved ones, and a smaller but still significant hole in my own life.  

A neighbor lost their one-year old son a few weeks ago, and two weeks ago yesterday, one of my posse lost her daughter.  A dear friend and neighbor is coming to the end of her fight with cancer, and it's hard to wrap my head around it all.  

Six years ago we spent the summer in and out of the hospital, which was better than some who spent their whole summer there.  But four of us really bonded.  A nurse dubbed us the "Posse", and we kinda were.  We watched out for each other, and our children, sitting with them when one of us left the hospital, meeting up for meals, hanging out and chatting.  

Almost two years later, we were in the ER with seizures and being put on medications which scared me to death.  This same mom was also there, and walked me through what life is like with seizures and meds and everything.  The doctors diagnosed, she made life doable.  

Last week she posted, "I've heard that unicorns never die, they just become legends..." and my heart broke. 

And in addition to the heartache for her and the others around, survivors guilt and anticipatory grief are real, too.

But at the same time, Aaron is here, and he's alive and well, at least the way we define "well."  (Side note, I wanted to enroll him in a Covid study.  He obviously met the first criteria, between 6 months and 12 years, but the second question asked if he was in good health.  I thought about putting yes, because it's good health for him, but figured they'd laugh me out of the building if we showed up.  Oh, well...)

So we're moving forward, planning for life.  He said "see you in two (years)" to his older brother a few weeks ago.  We're getting ready for the new school year.

This fall I'm starting a full-time master's program as well as working full time.  We've discovered that Aaron does much better on a blended diet than formula, but out of necessity, he still uses formula five days a week.  Blending twice a week isn't bad, but given that I'm not sure how to juggle things I've got now, anything I can eliminate is critical.  Enter my sister...

The baggie on the left in the middle 
picture is the finished product.
Totally shelf stable for 25 years! 

From time to time, I've made food for Aaron ahead of time, but then it needs to be stored in the freezer, and there truly is only so much space there.  I was visiting with Mara and she mentioned that her neighbor freeze dries her husband's smoothies.  Aaron's meals are a lot like a smoothie!  And Mara owns a freeze drier.  (Can I say, freeze dried watermelon tastes like cotton candy!)

So I'm in the process of putting together enough food for Aaron for twice a week for the school year, and she is freeze drying it for me. It's a lot of work, for both of us.  But in the end, I'll have enough to get him through the year in a shelf-stable, no refrigeration needed, still completely nutritious state!  Totally. Worth. It!!! 

If you look close, Aaron signed his
name just under the American flag.

'Cause we're planning for life.  Although, there is that little voice in the back of my head that says, "what if he doesn't end up needing it all?"  I mean, we are in a pandemic, and the turkey has also decided his latest trick is to undo his  trach ties.  I mean, what could go wrong?  

But I'm telling that little voice to shut up.  I'm not listening.  I will move forward.  A month ago there was a beam signing for one of the big support beams for the new hospital.  It opens in 2024.  And I'm planning on him being seen there.  It's going to be his hospital, 20 minutes from home.  And to do that, he has to stick around.  

I'm planning on it.   

“It does not do to leave a live dragon out of your calculations, 

if you live near him.”

― J.R.R. Tolkien

Eleven Trips Around the Sun

So very tiny....

When Aaron was born, before he was born, we decided that we were not going to do anything "heroic."  We didn't want to "torture" him.  

But when he was born not breathing, we knew we had to try to resuscitate him.  

Quickly brought around, our little guy was transferred to the NICU where he let us know exactly what was and what was not okay.

Arterial lines?  Feeding tubes?  Labs and echos?  No problem. 

A diaper change?  No thanks!  I seriously told my one-day-old baby that those were just part of life and he needed to suck it up. 

And so time went on.  After a harrowing day six and seven of life where he chose this life over death, he improved steadily and came home at 16 days old.  

And so life continued...  

1 Year Old    

Two Years Old

Three Years Old

Four Years Old

Five Years Old

Six Years Old

Seven Years Old

Eight Years Old

Nine Years Old

Ten Years Old

 Eleven Years Old!!!

The past year has brought a lot of new experiences and challenges.  A pandemic and lock-down.  School at home, and then back in the classroom with many precautions, including severe restrictions on where he could have suctioning and other life-saving cares.

Nurses who wear masks the whole time they interact and no church attendance for him.

Looking forward to being able to get his vaccine, hopefully this fall.

Aaron's heart and lungs continue to deteriorate.  We pray they can hold out much, much longer.  He sleeps more than before, but he loves to interact with family and watch movies.  

He loves science and books and art.  Isn't much into writing though.  You know, kinda like most fifth and sixth grade boys.  

Mostly, he's ours, our son, brother, grandson, friend, teacher.  He is as much our ministering angel as we are his.  Maybe more.  

Let us relish life as we live it,

find joy in the journey,

and share our love with friends and family.

President Thomas S. Monson

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

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.

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

Home!

We get to go HOME today!!  

Probably our fastest rhino admit ever. (4 days, people!) I’m not going looking.  If someone wants to doublecheck, that’s fine.  Just do a search for rhino and be prepared for a LOT of posts.  It’s our nemesis.  

Anyway, he’s on “sick” settings on his vent to keep his lungs open, but still, HOME!!

Thank goodness for a mini-ICU at home.  

I remember a PICU parents lunch several years ago (we had those weekly pre-Covid) where I mentioned we were hoping to go home that day.  A poor mom sitting across from me got kinda excited.

“You mean you can discharge straight from the PICU?”

Her little one was in with RSV and had just bounced back to the PICU from the floor.  They had been hoping for home but she wasn’t quite there yet, and I’d gotten her hopes up again.  

The social worker gently chimed in, “SHE can go home from the PICU, you won’t be able to.”

And I explained that we already had at home a ton of medical equipment.  She was glad her baby wasn’t going to have all of our “accessories” but still disappointed.

But here we go!  (And I get my 20 foot work commute back again tonight.)

Ah! there is nothing like staying at home, for real comfort. 

~Jane Austen

How We “Work”

We’re here, we’re back, whatever...