Life Out of Order

There's an order to this thing we call "life."  It's the way it's "supposed" to go. 

As kids, we watch our great-grandparents, or sometimes grandparents grow older, weaker, needing more help.  Our parents are strong, in charge, know everything (okay, until we're teens anyway). 

I remember coming home from school one day and finding my mom curled up in her rocking chair, crying.  She'd gotten a phone call saying that her grandma, my great-grandma, had died that day.  I knew her, but not that well, and felt a little sad and kinda awkward.

A couple years later, as I got up to go to school, my mom came and wrapped her arms around me to tell me that my grandma, my dad's mom, had just passed away.  That was harder.  It felt wrong, the day felt colorless and strange because time should have stopped, but no one else at school seemed to even realize that the world had changed. 

The years go on.  My other grandparents also passed, although my children knew two of them.  My mother-in-law no longer drives.  When I talk to Mom, I hear Nana's voice.  My father's hands have been replaced by my grandpa's.  It's strange to see them on my father, but that's the way things go.

My children are growing and grown.  I have an adorable granddaughter.  Now I'm the one getting older, and worrying about my parents and my mother-in-law.  I'm the grandma.  And this is how things are supposed to be.

Adult children bury their grandparents and parents, and eras end, and it hurts, but life goes on.  Babies are born.  Old people die.  The Circle of Life.

But sometimes it's not that way.  Not always.  Not nearly enough.  And I'm still trying to figure out how to process it.  I'm at the point where I'm about to throw in the towel and cry that it's just not fair.  It never will be.  And there's nothing I can do about it.

We special needs moms are scary.  Honestly.  Other moms are afraid of us. It's almost like our life is contagious.  Our children die.  They don't grow up.  And it feels so, so wrong.  And in the fierce way moms have of protecting their children, other moms don't want to know this pain.  They don't want it to be real. 

We don't either.

I've lost count of how many children have died, just since 2020 began.  But two in particular have devastated me.  Zane was one of the few boys with full T18 older than Aaron in the whole world!  His mom has been a mentor to me from the beginning.  He went into the hospital just after the New Year and was gone so fast. 

This week, sweet Emarie got sick.  She's 12 (now forever 12) and I think we've known her family for almost ten years.  She didn't have T18, but she was part of the Chromosome 18 family.  She coded on Wednesday, and hung on until today.  I just can't seem to wrap my head around this.  She was so happy, doing so well.  A wonderful big sister, and now she's gone. 

Her dad took family pictures for us before Matthew's mission.  Her mom and I sat together at so many school events before they moved farther south.  I love her smile, her younger siblings.  And I have no idea how to process this.  I never figured out how to process Zane's passing. 

This seems so wrong.  So out of order.  My mom used to say she wanted all of us at her funeral, because that meant she wouldn't have attended any of ours.  I said that to my kids, too.  Until ten years ago. 

Most of my posts manage to end upbeat.  This one won't.  I'm sorry.  But I just can not seem to find anything positive today about a child dying.  It just feels so wrong.  So out of order.

“For no soul can ever be replaced, and death claims a beauty and a magnificence that will always be missed.”

― Jocelyn Soriano

I Hope...

I'm not very good lately at updating.  Sorry.  I tend to keep a lot of these thoughts in my head, or I think I've written, but nope.  Still in my head.

I finally managed to get around to communicating with Aaron's neurologist regarding our weird two weeks the beginning of November.  Actually, it was more of a bury my head in the sand than a too busy kind of thing.

We had that weird 48 hour stay the beginning of November where we thought things might be surgical, but then looked like a viral tummy bug.  But he was just So. Tired!  All. The. Time!!  Trach/vent clinic came up mid-November so I mentioned it there.  He was still really tired. We're talking over a two week period he was sleeping more than twice as much as normal and kinda tired acting even when he was awake.  We (doctors and I) decided to look into some labs.  Were his thyroid meds working well?  That can certainly cause it.  What about vitamin D levels?  They all came back good.

In the back of my brain I'd been wondering about seizures.  No reason.  He wasn't acting that odd.  It was just this darn lethargy.  So once we had the labs back, I decided to give him a dose of Ativan (seizure rescue med) one evening.  Lo and behold, it worked.  He had kinda a strange night where he really didn't sleep, was dazed but would interact if you came into his line of vision.  And the next morning?

Well, apparently we found the reset button.  He was back to his normal, active, playing, goofy self.  I liked that I had my kid back.  I didn't like the implications so much.

In the meantime, we were struggling with his oxygen.  Cardiology had warned me long ago that as his pulmonary hypertension progressed, we'd get to the point where we would have to tolerate lower oxygen saturations.  And we have been.  At one point (several years ago) his sat monitor alarmed if he went below 92, then it was reset to 90.  96 was our ideal, the sweet spot.  I can't even remember when we reset it to 85.  It's been some time.

But since mid-fall, 85 was pretty good.  If he was asleep, we might see an 88.  I can't remember the last time we were in the 90's.  This kind of thing pulls at you.  It weighs you down.  We were having to set the alarm for 80-82 on a regular basis.  It's hard.

So with him feeling better and not sleeping so much, work, worry about sats and such, I just really couldn't seem to find the emotional time and energy to connect with neurology about possible sub-clinical seizures.  Especially since I felt like I might be tilting at windmills.

Getting ready for the VEEG

When I finally did, I got an email back increasing his seizure med (which also makes him a little more tired and less interactive, boo!) and telling me to contact a company about a 48 hour video EEG (VEEG).  That was scheduled for two weeks after the med increase.  (Completely coincidental, but also an important time frame.)

In the meantime, Christmas was coming, we were getting out of school, and everything else.  Sats continued to be between 80 and 85 most of the time.

His VEEG was Jan 2-4.  Talk about fun!  He had to keep 21 wires glued to his scalp and two more on his back for two full days.  In all honesty, he was really, really good about it.  I gave him a short haircut and he did have to wear no-nos on his arms because he kept hitting them, but overall, no issue at all.  However, when it was done and I told him it was over, immediately he started pulling at the cap and netting and wires.  Those suckers were coming off!  It did take a lot of nail polish remover (acetone), Dawn dish soap and coconut oil to get it all taken care of.

48 hours later, all done!!

But here's the thing:  the day before we started the VEEG, his sats started creeping up.  He became less tired.  I was seeing 91, 92 when he was asleep, and the monitor wasn't going off all the time like it was before (yes, even set at 80 we heard it a lot).  And it's continued. This last week, I've put his monitor back up to 85, and it's still not going off much. We even sometimes see 90's when he's awake!

I did some research into his seizure med.  Keppra is a pretty fast acting drug.  It reaches a high state in the blood between an hour and two hours after administered.  However, it takes about two weeks to reach what they call "steady state."  Remember what I said about the time period between the increase and his VEEG?  Yeah, about that long.

Aaron:  Legend in the Making

So now I'm (impatiently) waiting the report.  We don't see neurology until March (and that's only happening because someone cancelled) so I won't get to talk to the doctor until then.  But I think we have at least some answers.  It looks like he's been seizing and we weren't aware.  Seizures are exhausting, hence the extra sleep and lethargy.  But even if we can't see them, that doesn't mean they're not dangerous.  We need to figure out things.

But at least now, he's happy.  His heart and lungs are working better.  He's getting the oxygen his body needs.

I hope this is the answer we didn't know we were looking for...

"Hope.  It is the only thing stronger than fear."

 Suzanne Collins

I Want to Remember, I Don't Want to Forget

December.  Christmas Time.  The most “Wonderful Time of the Year.”

For so many years it was my favorite time.  In lots of ways, it still is.  The lights, the sounds, the smells.  Friends, family, surprises under the tree. Celebrating the birth of our Savior.  It’s magical, sacred, glorious! In my 50 years, I’ve only slept a handful of times on Christmas Eve. As a kid, I wondered what I was getting.  As a mom, I can’t wait to see my kids’ faces. Yeah, it’s special.

But life has changed for me.  Or life changed me.  I don’t know.  I still love the music, the decorations, the Spirit of the Season.  But I’m also hesitant, frightened, and a bit sad.  Nine years ago I was praying for just one Christmas with Aaron.  Now, I keep praying for “one more”.  And hoping that it’s many more.  

Winter is hard on kids like Aaron.  So many in the hospital, so many who have passed away in December, often from a virus.  Yeah, and the common cold is the most common culprit. Most years we spend part of the month in Primary’s.  Last year we raced in, almost too late, and fought for ten days to keep him breathing.  Five years ago, we spent the days before Christmas, Christmas day and the week after in the PICU, coming home on New Year’s Eve.  That was the year our children voted unanimously to put off Christmas so Aaron could be part of things.  


The reality is, someday Tiny Tim’s crutch will be alone by the fireplace, and no one wants to deal with that before it has to happen.  

So along with my smiles, I find myself fighting tears.  ‘Cause this is hard.  Aaron is declining.  He has been for the past year or two.  It’s slow.  I hope it’s very slow. 

But it’s real. We are getting poorer results while giving more support than we ever have before.  

And because I want to remember, I don’t want to forget, I try to store as many memories of the good times while I can.

I want to remember the look of joy on his face as he sees Daddy come into the room.  

I want to remember him imitating Linnaea’s cries.  He was so funny.  She was upset, and he chimed right in, then stopped and looked at us to see if we noticed how cute he was being.  And then went right back to it.  Newborn cries in stereo, without twins!  

I don’t want to forget the looks he gave David when David snuck brownie crumbs into his mouth.  If looks could kill...  And he wouldn’t take his eyes off Big Brother for quite some time, in case he tried it again.

I don’t want to forget how excited he gets when we get him ready for church and put him in his wheelchair.  He likes going out, but he really gets going on Sunday mornings when he’s all dressed up.  Buckling the straps is a challenge as he wiggles and giggles through the process.  

I want to remember how he laughs at his own jokes, and how silly they are.  He loves to tease his brothers, and is quite the imp when it comes to “helping” them with his cords and tubes.  He often laughs so hard that the ventilator alarms, thinking that he’s breathing too fast.

I want to remember the look of wonder when I first turn on the flashing penguins above his bed.  

I don’t ever want to forget the cuddles and the look of determination, along with pain, when he endures yet another IV poke, or other hard time, but does so with an expression of trust that as long as I’m there, he’ll get through.  

I want to remember him “leading” the music down in the congregation on Sunday while I’m up front.  

The wiggles and giggles in his bed.  (Did you know the cool kids don’t lie upright in bed?  It’s sideways with feet hanging over, always.). 

The running and spinning with his brothers in his wheelchair.  The “supervision” of basketball games on the driveway and soccer tournaments.  

The drives in the car where sometimes he manages to unbuckle his seatbelt, making it so we have to pull over to refasten him.  

How he “helps” with diaper changes and g-tube feeds, and laughs at you the whole time.  

Sunday was our Christmas concert.  That’s really where I feel the Season begin.  And this was the first year I brought him.  I don’t want to not have a memory of him there while I sing.  And so this year, he came.  He sat and played with Daddy through the music and really enjoyed it.  And I have another memory to tuck away, safe and sacred, and treasure when there are no more memories to make.  

At a Christmas party two weeks, a friend was telling me about how her son’s condition has progressed to only soft foods, and they’re not far from a feeding tube. I had no words for her.  It’s natural to tell someone that things will get better, it’s just a bump, it’ll improve.  But it won’t for him, for her.  And I’m starting to realize that we’re in a similar position.  

Oh, I’m not discounting that things can’t get better here and there, but overall, we’re on a downward trajectory.  That’s what progressive diseases do.  They continue to get worse.  They don’t get better.  And “someday” will come, sometime.  And I don’t for a minute think I’ll be ready.

But in the meantime, like a squirrel storing nuts for a long winter, I’m packing away as many thoughts and memories and pictures as I can.  

”You remember someone said that God gave us memory so that we might have roses in December....” ~J.M. Barrie

Another First and a Challenging Time, Part 2

We almost didn't make it to the Primary Program on Sunday.  Saturday evening was a bit of a mess for Aaron, and frankly, I ended up shooting in the dark trying to pull him out of it.  Fortunately, it hit the mark (somehow).

Saturday day was pretty darn good.  He watched football with his brothers and supervised me in the kitchen.  But that evening, he started to struggle.

And by "struggle" I mean, he didn't have any desire to keep his oxygen sats above 80.  In fact, mid-70s were where he wanted to hang out.  Um, no bueno.

We tried everything.  I bagged him, and unless we were actively bagging, he was down in the low 80's.  Normally, once we get him up, we can leave him on the bag (oxygen flows at 100% through that) and he does fine.  Not this time.  So we bagged in some albuterol, using the bag to force it into his lungs.

I should say, we had already given albuterol a few times, twice during the BYU game (apparently he couldn't handle the excitement of them trouncing their opponent.  Maybe we should have watched Utah instead).

We changed his vent to secondary settings (more support).

I put him on the big tank for a while.

We changed the trach.

Bagged him some more.

Vented his belly (which did help a tiny bit).

Kid!!!

Finally, I gave him a "stress dose" of lasix.  I simply couldn't think of anything else.  His lungs sounded good.  He was laughing at me, for Pete's sake!

He peed.  And he peed.  And he peed some more.

And we finally gained some ground.

He made it through the night and was doing better by the morning, so he got to go to church.

But today, well, just as church started yesterday, I started wiping his nose. And we're now on "snot patrol."

The fun goes on.

"Life gets more interesting as it goes on. It becomes fuller because there is perspective there."     

Ann Dowd

Another First, and a Challenging Time Part 1

Yesterday was the annual children's program at church, the Primary Program.  It's presented by children ages 3-11.  They sing and say lines regarding what they've learned.

And Aaron has never participated.  

Oh, they've asked him to, but it seemed to be a bit pretentious.  We had no way of really knowing, or even guessing, what he'd like to say.  But this year was different.

This year he has his Tobii.  

This year he can tell us his thoughts, feelings, and goofy jokes.  (I was a little worried that the last might slip in.)

So two weeks ago, I spent the day creating boards with church vocabulary and symbols, and then he and I worked to figure out what he wanted to say.  He kept coming back to Heavenly Father and Jesus and his family.  (And lots of times he would name family members over and over, but there's a lot of us, so we just did "family."  He couldn't hog the whole time. 😁

In an effort to have some control over what he was saying (you know, that joke telling thing), I created one board just for his part in the program and tried to make it as foolproof as possible.  

And I was kinda nervous.  Would it work?  Would it touch people, or would they think it was an attention getting thing?  Would it take away from the focus, which is on our Savior?  

Yesterday came with a whole host of emotions, but overwhelmed wasn't the one I was ready for.  

Opening hymn:  "I am a Child of God."  Oh boy, and I was leading the congregation.  That one is a special one for us (and many others).  It's the song I've sung as lullabies to my kids.  The one I've used in so many emergency rooms as we've waited for stitches, broken bones, etc.  The tender prayer as I've held them before or after a surgery.  And the one thing I simply could not get through when Aaron was tiny and I was still waiting for him to die.  

It's also the basis for my testimony.  I am His child.  He sent me here to earth to learn and grow, and I need help to do so.  I have many needs, He loves me, He wants me to return to Him and receive all He has to give.  

Yeah, not able to sing that one, so I mouthed it instead of singing and hoped I wouldn't completely break down.  I didn't.  Much.

The sacrament hymn was "Come, Follow Me," another sweet reminder of what I'm supposed to be doing, to whom I look for guidance.  And then the program started.

It was actually kinda hard for me, watching those kids.  Aaron actually isn't around kids his own age much, not typical ones.  And even the youngest ones are more developed and advanced than he is.  There is such a huge gap between him and his peers.  Most of the time, I simply ignore it, but that wasn't working so well for me yesterday.

Then they sang "I Will Follow God's Plan for Me," and I really struggled to hold it together.  Aaron's life is a gift and has a plan.  It's so very different than other kids' lives, but it's his and has so much worth.  And I'm supposed to maintain my composure through this??

When we got to Aaron's part, I was nervous and overwhelmed, and it was all I could do to push the button on the part he and I prepared together.  And his little computer voice rang out:

"I love Heavenly Father and Jesus, and being with my family."

And I hid my face as I put his computer back down, wiping the tears.  Each song continued to speak to me, although perhaps not the way others thought it might.  "I'll Walk With You" seems to refer to a handicapped child who can't walk or talk like others, but my thoughts turned to some of my students and other kids I've known who don't seem to quite "fit in" and I remembered again that I need to be there for them and with them.

I was so touched by the Spirit yesterday, so many reminders.  I will try to follow Him, to be like Jesus.  And I hope that as I do so, my life's plan continues to develop and unfold, and so grateful for Aaron's job in teaching me to feel His love for me.

My life is a gift; my life has a plan.

My life has a purpose; in heav’n it began.

My choice was to come to this lovely home on earth

And seek for God’s light to direct me from birth.

I will follow God’s plan for me,

Holding fast to His word and His love.

I will work, and I will pray;

I will always walk in His way.

Then I will be happy on earth

And in my home above.

(Okay, this is already too long.  The "challenging part will have to be part 2.  Hopefully I get to it soon??)  

Aaaand, We’re Back

Sign outside Aaron’s room here.

Well, it was a good run while it lasted.

We were six weeks, six weeks! from the one year anniversary of our last admit.  (July’s CT doesn’t count in my book, less than 24 hours.)

I thought we might make it, but nope.  He’s here.

It started last week, about Halloween.  He was tired, so tired.  And his diapers were loose.  And his heart rate was higher, about 20-30 beats per minute higher than normal.  No fevers, not yet.

But he pretty much slept almost round the clock. He’d wake up for a little bit, and go back to sleep.

By Saturday, I told William that if it continued, I was calling his doctor on Monday.  But then Sunday came.

Sunday was awesome!  He woke up laughing.  He played, he talked, he teased people.  He didn’t sleep much at all, just a really short nap before dinner.  I figured everything was good again.

Monday morning though was a different story.  I woke up and found his bedding and clothes in a plastic bag.  What?  When I opened it, I realized why, and was grateful his nurse had bagged them.  He’d had a massive blowout during the night, and then another smaller runny diaper before morning. His heart rate was up again. Not good.

His nurse texted me about 9:30 and he was running a fever, very sleepy.  He used his computer to say he was tired and sad and cold and happy.  (Yeah, I think this kid is always a bit happy.). Obviously, things weren’t going well.  I picked them up from school and tried to feel his belly when I got them home.  He was guarding, tensing against pressure, so we made an appointment with his ped.

And they sent us up here for a work-up.

The reassuring part is that with his ultrasounds and x-rays, it didn’t look like we needed surgery, which was my biggest worry.  Appendicitis is kinda a long shot as are some other intestinal issues like malrotation and that kind of thing.  But the consequences of just assuming it’s not that can be catastrophic.

There is something going on, and we’re still trying to figure it out.  It might just be an intestinal virus.   He’s still so very tired, although he did finally wake up about two this afternoon and start playing.  We put him on gut rest with only slow running Pedialyte for until mid-day and then gave him half Pedialyte and half food.  We’ll continue that for the rest of today and try to restart his normal food tomorrow.

It’s looking like this will be a shorter stay. I hope so.  And I’d really like my happy, interactive, silly bug back.

“Sometimes superheros reside in the hearts of small children fighting big battles.”

Uncle Aaron!

I'm sitting here writing with my arms full (almost) of baby girl.

It's "almost" because she's a very tiny, not quite six pound bundle of precious.  Miss Linnaea Mae joined her parents a few days before her mom's birthday in October and is the cutest little thing you ever saw.

And Aaron?  What does he think?  Well, we introduced the two of them when she was about ten days old, and he didn't seem too into her.  But the next day at school?

Teacher asked how his weekend went, and instead of using the page he was supposed to for answering, he navigated away from there, through two other pages and started talking about meeting a baby, and it was a baby girl!

Today at church, he continued talking about the baby, asking about the baby, where is the baby girl.  Yeah, I think he's impressed.

He's using his computer more and more.

Last weekend, he had all of us cracking up.  He was, too!  He was telling us,
"tomorrow at this time it will be Monday,  Terrible!"

And then he started calling out countries, "Puerto Rico, Cuba."  What?  Andrew mentioned that he wanted to go to China and someone else suggested that with the tariffs and all, they might not be so fond of us right now.  And Andrew replied, "Yeah, but pandas."  Aaron chimes in with "I love China!"   And he would laugh hysterically after each comment he made.

You know how you can laugh so hard you cry and can't breathe?  Yep, that was Aaron.  And so, yeah, we had to use albuterol because he literally couldn't breathe.  Silly kid gave himself an asthma attack, and acted like that was funny, too!  Sigh...

I've said it before:  He's a nut.

“A baby is God’s opinion that the world should go on.” 

—Carl Sandburg