Smarty Pants or Smart Aleck?

Sooo my kid.  Yeah...

Last week was the wax museum at school.  For the third year in a row, Aaron has chosen to represent a strong female character.  I'm kinda proud, and kinda hoping it's because of the strong women in his life.  I keep trying to live up to what he needs.

First year he chose Amelia Earhart, second was Helen Keller.  This year was Eleanor Roosevelt.  

Now, every child at his school is severely handicapped.  It's the prime requirement for enrollment there.  Federal law requires a child be educated in the least restrictive environment (LRE) possible, and this is pretty much as restricted as possible without being confined to home/hospital education.  In short, none of these kids are at "grade level" so to speak.  (In spite of the fact that I got an invitation to test my sixth grader for the ALL program, Advanced Learning Lab, the honors program in the district.  Whatever.)

But at the same time, they are learning and being taught and challenged.  So Aaron was asked to write

"Eleanor Roosevelt" on his computer for the report.  Here's what he did!  I couldn't believe it.  My severely handicapped child, the one that would only progress to a six to nine month level, if that, identified the first two letters in Eleanor and the first letter of Roosevelt.  It's kinda on par with a kindergarten or maybe first grade level.  A little beyond the average six to nine month old.  

Now for the second part.  He IS in sixth grade.  And sixth graders are notorious for not always wanting to work.  On Wednesday they were trying to get him to finish up his report.  He didn't have enough information.  

"Do you want to put this in?"

"No."

"Do you want to look at this?"

"No."

"Do you want to try this?"

"No."

"Are you going to say no to everything today?"

"Yes."

Oh, boy...  There's obviously more going on in that brain than people give him credit for.  I've always said one of the things that makes Aaron a little easier to parent than my typical kids is that he always does his work.  I may have to rethink that one...

His reaction immediately
after his vaccine. I think
he was relieved it was so
much easier than an IV!

Anyway, in other news, Aaron has now had both Covid shots, for which I am incredibly grateful!  I was a little concerned with possible side effects from the second so we scheduled it for a Friday afternoon so I could watch him over the weekend.  He was a bit more tired and needed a tiny bit more support than usual, but overall, if I hadn't been looking for something, I'm not sure I would have even noticed.  

This weekend he does seem to be starting to fight something.  He's needing quite a bit more support, although still within what we can provide at home.  He's more tired, a bit more junky, and his temp is a bit higher although not technically a fever.  (100.4 is the fever threshold.)  We're having a talk right now about how good he's been all semester, but just because it's coming to an end doesn't mean he has to take a "vacation" trip up north.  We'll have to watch and see, but I'm hopeful that we'll weather this at home.  Still soooooo grateful that we have the new trachs and they're helping him breathe so much better.  

Be a student of life and a lifelong student. 

~Terri Guillemets

I Am Enough

 It's been a long time.  Two months.  How did I go two months without writing? 

Actually, I think I know how I did it.  I have been writing, a lot!!  But it's been for classes and not on here.  As a side note I mentioned that on the 16th, I was done with what I needed to do for one class until after Thanksgiving.  Michael said he wished he had a class like that.  I then informed him I'd written four papers in 36 hours for that class, and he retorted that he didn't want a class like that.

But anyway, here I am. 

It took four weeks to get Aaron's new trachs in.  Fortunately, the special needs world looks out for its own.  A mom got in touch with me and asked what size and length we were looking for and sent me one within a few days.  Can I say, I did NOT expect what came next.

Aaron has not been doing great.  He's been declining.  It's slow, but it's real.  We keep hearing "disease progression."  We kept seeing disease progression.  Higher oxygen needs, lower saturations.  And then, with the new trach, things changed.  We started seeing higher sats, lower oxygen.  The opposite of what's been happening for months and even years!  His digestive system was working better.  He was happier, more alert!  Could it be that what he needed was a longer trach for oxygenation?  Kinda looks that way!

The last several days have been a bit harder.  I think he's fighting off something, but he's still doing pretty well.  We're still below 8 liters, instead of pushing 10 plus.  His sats are generally in the low to mid 80's instead of high 70's.  I said he hadn't been doing as well, right?  We're now tolerating oxygen saturations down to 77.  Yeah, 77%.  Kinda rough to wrap your mind around, so I generally don't.  

In the meantime, we've had Halloween, cutest Dracula ever, and he got a new wheelchair.  This is kinda awesome, and intimidating, too.  I mean, I learned to drive way too many years ago to put it down here, but it was like learning all over again.  This chair is a power chair, and also has the ability to raise and lower so he can be up at eye level, instead of everyone looking down at him.   It also turns in place, which is a bit hard to get used to.  He has his own controller, but so far, he doesn't get a whole lot of access to it.  He can do it outside, or at school in the gym or hallway, but you know, in the interest of not putting holes in walls and running over people, we kinda control it the rest of the time.  

He also got his first Covid vaccine.  I cannot say how grateful I am for this!!  He gets his second one this next Friday.  It is such a blessing to be able to help protect him this way.  He still won't be going out much until at least spring.  The viral season is already exploding.  The last count I heard from Primary's was between 245 and 249 patients.  It's only a 260 bed hospital and that includes units like NICU, the ER, and behavioral health.  It's busting at the seams.  Right now, it's sorta okay because they can do something called load leveling, where they send patients to other hospitals as well.  Kids that are older or less complex that don't need quite the level of specialized pediatric care.  But guess what happens if the other hospitals get too full?  

Anyone remember a few weeks ago when Idaho enacted crisis care standards?  Know what that means?  For us, that means Aaron does not get admitted.  He gets turned away.  Kinda see why I'm so vigilant about masking and vaccines and such?  'Cause you know what, you just don't know exactly how it's going to affect you.  You don't know if it's going to land you in one of those oh so sought after hospital beds.  And you don't know what it's like watching someone turn those nasty colors as they fight to breathe.  I do.  It's ugly.  And that's why I'm so insistent that everyone around Aaron take precautions.  And why he doesn't go to church, and we're very careful who we see in close quarters.  It's just not worth the risk.  

But anyway, off the soap box.  

I've been pretty blah lately.  I've struggled just to feel.  Sometimes that protects me, and sometimes it just hurts.  We lost two more trisomy kiddos last week.  Older kids, one that I know personally, in real life.  It's a gut punch. 

But I thought, once I get Christmas things out, that'll do it.  Nope.  When I get Andrew's package put together?  Not really (but I am excited about his reactions).  I've tried to be easy on myself.  We didn't do quite as much with the decorations this year.  But still...

And then tonight I got my old Christmas songbook out.  

Yeah, that's what I've been missing.  For the second year, we haven't had our community choir that I always sing in.  For me, Christmas music began with rehearsals in October.  We sang on Sunday nights and the songs would play in my mind all week.  It came to a climax the second Sunday in December, and that's when Christmas really started.  

But as I sat at the piano, I started feeling again.  And it was poignant, and soul-filling.  I went through the songs I grew up playing:  "Chestnuts Roasting on an Open Fire," "Silver and Gold," "I'll be Home for Christmas," and so on.  Playing them, singing some, hitting sour notes because it's been waaaaaay too long.  And then I came to "The Little Drummer Boy."  

I don't know, that's always been a favorite of mine.  Sad little boy with nothing to offer, home gone, just his drum surrounded by all sorts of magnificent gifts.  But he plays it, plays his best for the Christ child.  And the Baby smiles at him.  What he has to offer is enough.  

What I have to offer is enough, too.  What I can do, what I can't do, what I want to do, it is enough for Him.  I don't have to do everything, be everything, know everything.  It is enough.

In class, we're often reminded of the importance of self-care.  I think I've been neglecting that aspect of mine for too long.  I need my piano, my music, the grounding.  I'm glad I found it again tonight.  I'm glad I found myself again.  I am enough.  

Then he smiled at me
Pa rum pum pum pum
Me and my drum

Warning: Rambling Therapy-type Post

Okay, it's time for a "therapy" type post again.  You've been warned.

One of my (self-assigned) assignments for a class was to pick a word to focus on, reflect on, and use to re-center myself.  I'm supposed to use it to help frame both professional and personal regulation.  When I asked the family hive mind, the one all the kids who responded chose was "resilience".  Various others had some other ideas, but that's the one that spoke to me, perhaps because my kids, without consulting each other, said so. 

So resilience it is.  And I like it.  One described it as ocean waves that keep coming in, and sometimes they send you for a tumble, but you get back up.  When I asked what resilience looked like, another said pansies (you know, the flower I associate with Aaron, the one on the blog).  

But maybe it's a bit like praying for patience.  I learned LOOOONG ago to never do that.  See, God doesn't give you patience.  He gives you opportunities to practice and develop patience.  

And I'm left wondering if resilience is something similar.  

Can you tell I'm having a bit of a rough time?  (And I'm avoiding homework??) 

So here we go, and like I said, you've been warned.  

Aaron is still struggling, although he might have finally gotten rid of the ear infection that sent us to the hospital in the middle of the night in an ambulance on August 11.  But it took three different courses of oral (okay, g-tube) antibiotics and a fourth round of three antibiotic injections, each 24 hours apart.  

And yesterday he decided once again that breathing was totally optional.  As in even with the bag, his nurse was struggling to get him out of the 60's.  Someone tell this kid if he's going to be a rebellious tween, he needs to pick something else?  So I raced out of a (mandatory) meeting and picked them up at school.  (It didn't help that last week as I passed the school, there was an ambulance and fire truck there with lights on and doors open.). Anyway, we got home and did a trach change that went pretty normally.  There was some "junk" in the trach, but not completely blocked.  So who knows? 

And then the fun began.  Big blood clot.  I'll spare you the picture I took but about the size of two peas stuck together.  And then more bleeding, frank, fresh bleeding.  And later, another.  And another.  All told, by the time I got up this morning, he'd had about eight clots that he'd coughed up with fresh bleeding behind each one.  After the first two last night, I decided he wasn't going to school today.  The trouble with bleeding is a two-edged sword.  Suctioning, especially going just beyond the trach, can make it worse, but not suctioning can lead to clotting inside the tube, cutting off all breathing.  See the problem?

This morning when it continued, we had to head in.  So we spent the entire day in the emergency room.  They ran a ton of labs, took an x-ray, and called the ENT who brought in a fun camera to look down his trachea.  Long and short, they found lots more blood and clots, mostly up by the end of the trach tube.  The thought is that it is curving enough that it's rubbing on the front of the trachea and causing the problem.  Unfortunately, the solution is probably a longer trach, which doesn't just hang out on hospital shelves.  It's a specialty trach, and I really didn't like the other options we had there.  We did come up with a workable plan until a new one can be acquired, but then given the amount of blood (and the fact that just as they came in, he did block his trach leading to us doing an emergency change), they wanted to keep him for observation.  

Nope, not happening.  I was very much against it unless there was something they could do there that we can't do at home, and there's not.  In fact, we can watch him better at home than they can there just due to staffing and protocols.  So home we came.  And here we are.  But the other part is that he's got some liver and heart labs that are wonky, more than usual.  And I don't like it.  At. All.

My friend died last night.  I don't even know how to process this.  It's been coming, but still, to have it here...  I ache for her husband and kids, and the whole neighborhood. She was, IS, an amazing person.  Like I said, I don't know how to do this.

And then there's school.  17 credits is a LOT.  And today was supposed to be spent in study, working on my papers, my mid-term, my term paper, and the group classes I really need to get teaching.  Um, nope.  Didn't happen.  Don't get me wrong.  I am LOVING what I'm doing.  This is what I'm supposed to do, who I'm meant to be (just wish I'd figured it out 30 years ago).  But it's hard.  And while I'm working on how to help others, how to help them process the difficult things in their lives, I'm realizing that today, right now, I'm not processing.  I'm shoving it down, trying to ignore it, and trying to write a paper on racism.  

So there I am.  My friend is gone.  My son is struggling.  I spent the whole day at the hospital which is just EXHAUSTING, and now I'm need to set that aside until "later" to process.  Except that I decided I couldn't do that.  So here I am, writing, processing, untangling the knotted up threads in my mind.  And you, if you've gotten this far, have a front-row seat to my insanity.  

And maybe now I'll be able to focus a little more, and maybe even get some sleep tonight before it starts all over again tomorrow.  I love you, Traci.  I hope I can someday be like you and like Aaron.  

“If there ever comes a day when we can’t be together, keep me in your heart, 
I’ll stay there forever.” 

—Winnie the Pooh

And Then There Were Two...

Yesterday, Joseph moved out to go back to school.  We're down to two.  TWO.  Not quite sure how this happened but it did.  It's Michael and Aaron.  Just two at home.  (Plus two dogs, which is almost like two toddlers, but whatever.)

And Michael is a sophomore and playing football, and Aaron is in 6th grade.  I just started my social work master's program.  Michael and Aaron both seem to be enjoying school, I'm loving it!  Totally overwhelmed and feeling like I know nothing, but it's fascinating.  I've been assigned to two grade schools for my practicum and love getting to know the kids and staff.  

In the month (plus) since I wrote, Aaron has kinda struggled.

Anyone remember what an ear infection feels like?  That hot needle poking into the eardrum?  The electric shock you get every time you swallow, or the throbbing pain when you like down?  Yeah, the ears...

Anyway, the beginning of August, we started seeing some drainage from one ear and he wasn't as happy.  A couple other things came up and on the 9th, I made plans to take him in the next day, probably to Primary's but not quite certain.  Aaron decided he was done playing around.  He'd been having a rougher time all evening, needing to be bagged pretty often but able to maintain with that kind of support.  I figured I got off work at 1:30, would try to get a few hours of sleep, and then take him in.  Um, nope!  At 1:35 he took over.  Even bagging him we struggled to maintain 70's saturation.  (Remember, most of us hang out about 96%.).  So plan B (or G or Q?? who knows how many versions by then.) I grabbed the hospital bag, William and the nurse worked on Aaron, and we called 911. 

Guys, it's been long enough since we called them that I didn't know them, and they didn't know me!  That's actually kinda a good thing.  I did have to tell them I was riding in the back, within arm's reach of Aaron.  He's complicated enough that they just said, "okay."  Good thing.

Anyway, due to some pain issues we did x-rays of lungs, hips, legs, etc, ran all sorts of labs.  Everything came back good, except his ears.  Bilateral nasty ear infections.  Bring on the pink stuff.  (I remember taking that, it tasted good!  Too bad his goes through the g-tube.) He starts to get better and we discharge on the 13th

Fast forward ten days.  You know what is significant about ten days?  That's the time it takes to go through the antibiotics.  He's struggling again.  This time I didn't wait for him to take charge and took him to the pediatrician.  New antibiotic, not quite as yummy, but stronger.  He does better again, and is actually happy and laughing for the first time in quite a while.  For about ten days.  Yeah, that again.

In the meantime, school starts and the usually back to school crud starts popping up.  He's doing well, but some in his class are getting sick.  And then we had some difficult things happen mid-week as well.  He struggles more, we start suctioning blood tinged secretions.  And he needs more oxygen.  And some more.  And his nose gets a little snotty...

Which brings us here.  To the ER.  Again.  The good news is that his left ear is definitely infected.  Yes again, and yes that's good news.  His chest x-ray looked like him in my opinion.  So now we're waiting on labs, but hopefully we'll be headed home sometime later.  Still waiting on the labs.  

But man, this poor kid!  And he can't have tubes because there is no room in the middle ear for them.  The structures in there are either malformed or under developed so not an option.  

Through it all, he just maintains. He tries to smile, he watches his movies.  He doesn't sleep well, but again, it hurts to lie down.  He's my hero.  They were trying to get an IV in and he just endured it.  He shook, he grimaced, but as soon as they were done, he was fine.  He didn't fight or cry.  He just did it.  I hope when I grow up, I'm like Aaron.

A true hero isn't measured by the size of his strength, 

but by the size of his heart.

Zeus, from Hercules

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