Monday, December 21, 2020

2010, The Dry Run


2010, or 2020?

As I've looked at this last year, I've been struck with the similarities of our 2010-2011 year. 

That was the year Aaron was born.

Feb 2010:  I go in for a routine ultrasound.  Yes, I know they do an anatomy scan, and they look at aaaaallll the baby parts, but the one I'm the most interested in is his/her gender.  I've got fun ideas I want to try to put in place but will they be pink or blue?  Instead, I feel like I've been sucker punched and can't breathe, ever.  My world (and my family's) has just been turned upside down.

Feb-Mar 2020:  Rumors and rumblings of a new disease are growing louder, more persistent.  In the middle of a national ballroom competition, the world shuts down:  NBA, the competition (that we've been involved with since 2007 yearly, and even back when we were in college), school, church, just about everything.  Our world goes virtual almost overnight.  Life has changed dramatically.  

Spring 2010:  I continue to do research and visit more doctors than I've ever seen before.  I cry and I wait, we plan and re-plan, but mostly, I isolate.  I "bubble" myself as a defense against people who don't know, those who would say insensitive things that I'm just not up to dealing with.  In my sister-in-law's words, the "well-meaning weirdos."  

Spring/Summer 2020:  We watch the news, I do research, looking for scientific evidence needed to help protect us.  But science is a tricky thing, especially when confronting a new idea.  Hypothesis are formed, tested, revamped, sometimes discarded.  We've had a front-row seat to the research process never seen before by the public, and it's kinda messy.  Still, I trust it. Don't necessarily like what's happening, but when someone can admit that they were wrong with what was initially thought and show why and come up with another idea that (might) be better and start testing that, well, I'm more comfortable with that than simply sticking with something to save face.  

June 2010:  Aaron is at his first doctor's visit after leaving the hospital, and I'm still so, so, sooooooo overwhelmed and scared.  Terrified that he's going to die on me any day, and desperate to figure out how to save my little boy.  And I have No. Idea. how to move forward, so I ask:  "what do we do now?"  Dr. K. asks what my goals are.  Fair question.  Lots of parents want their child to experience as much of life as they can in their short time, so they do everything, go everywhere.  That's okay.  That's their plan,

But I told him, "I want to keep him here as long as we can."  

"Then don't take him out until after flu season." 

It's June, flu season just ended.  So I clarify, "Next May?"  


And so we did.  We locked down our house.  No one came in that didn't live here.  We didn't curtail the kids' outside activities much, but there wasn't the very high chance that they were coming into contact with a contagious virus multiple times a day.  We did wash well, and if someone so much as sniffled, they got a mask.

Yeah, a mask.

In 2010. 


If you were sick in our house in 2010 (and every year since then) you had two choices:  a mask or your room.  And it didn't matter which you chose, but you had to choose.  

But it was a balancing game, one we're still trying to play.  I've known people which medically complex, fragile kids who simply lock everything down, and have done so since their child was born.  And that's what they choose, and that's okay.  Just like I chose to keep Aaron isolated for his first year instead of taking him out.

But that's not what we've chosen.  We didn't save Aaron's life for him not to live it. So we've taken what we hope have been calculated risks, and we still do.  

He goes to school, and so do our boys.  We had our adult kids over for Thanksgiving and we will again for Christmas.  One doesn't even have anywhere else to go as the dorms are closed for the holidays.  But they've tried to be careful and they got negative tests before coming home. 

Yes, one son played rec soccer and another is playing rec basketball.  Does it scare me?  Yep.  Are they as careful as they can be?  Yep.  I even took Aaron to a couple of the soccer games (although we stayed waaaaaay away from everyone).  And basketball is only allowing the players, one coach, the refs, and maybe one videographer in the gym. 

I'll admit, this all broke me a few weeks ago when I thought about my son's senior year, how it "should" be, and how it is. I thought about the choir concerts and parties and just good times I had with friends my last year of high school, of the wrestling tournaments and dances, and I lost it.  He doesn't get any of those (okay, for him it's basketball and football, not wrestling) and that's not okay.  It's not okay in the same way that Aaron doesn't get to play Little League.  But it IS.  It's reality.  And sometimes it hurts way too much.  

I get it, believe me, I GET IT, when people say we're not guaranteed another year, another tomorrow.  I've been LIVING it for the past almost 11 years.  Christmas is four days away.  I'm just now counting on Aaron being here for that.  But at the same time, I feel like it's important to take the precautions now to help maximize our chances of having a next year.  

Because if we don't take them, we might have this year but no more after.  If we do, there's a much better chance that while this year looks different, we can have many more later.  And like 2010, that's a calculated risk I'm willing to take.  

To keep every cog and wheel is the first 
precaution of intelligent tinkering.
Aldo Leopold

Sunday, November 29, 2020

Too Long, Again


I know, I know, it’s been a long time.  Sorry.

Aaron has been home, recovered (pretty much), had Halloween, a couple doctor appointments and gotten sick again. 

I said it’d been too long, right?

Anyway, he did manage to weather this one at home.  He did continue to run a fever for about a week after we got home, but it finally went away.  He got another ear infection (maybe twice?) and a cold and is now doing “okay” with the resulting increase in his lung pressures.  

He thinks he’s doing more than fine.  Something the last couple days has been hilarious.  I would agree, except he’s laughing so hard that he’s hyperventilating and throwing himself into an asthma attack.  This kid...  I tell ya. 

We did visit with another pulmonologist for a second opinion on his lungs and his vent settings.  The good news is that she believes we’re doing everything that we can do, and his settings are the best ones for him. That’s also the bad news.  There’s not a lot more that we can do to optimize his health.  It’s bittersweet.  

We’re still riding the Covid isolation rollercoaster that so many are on.  I find it more than a little frustrating to deal with those who think it’s no big deal because they’re all healthy and fine.  And it’s hard to have teenagers who should be going out, hanging with friends, doing activities, and can’t.  But I’ve seen the reality of an overcrowded ICU.  I’ve lived it.  I’ve been in a room built for one with two beds and two sets of monitors.  And I’ve watched as staff have rushed from one patient to the next, never really having the time to slow down.  During a (virtual) meeting at Primary’s two weeks ago, we learned that there are about 14 kids hospitalized, half of which had no pre-existing conditions.  And this is a virus that “doesn’t affect” kids.

In other news, William finally was able to have knee surgery ten days ago, and my dread of the dentist has caught up with me (again).  I had a root canal on Tuesday because, why not?  But we just keep moving on.  I’m getting used to working a swing shift and then trying to sleep for a few hours when the kids go to school.  Andrew is back on a hybrid schedule because there are too many cases at the high school but will return to a "full schedule" tomorrow.  Michael still goes to school on (this year’s) typical schedule of M, T, Th, Fr.  

And I’m trying to get through some pre-requisites for a master’s program.  

Yeah, life is kinda busy.  And challenging.  And still, it’s good.

I’m grateful for this time to be thankful.  A week ago, we watched the prophet speak and as he did so, I felt it touch my soul.  One of his challenges was to flood social media with grateful posts.  I don’t think that means we have to ignore the hard times or paint everything all rosy. But I know that as I read and looked at pictures, my spirits lifted.  I was reminded that during one of the very dark times in Aaron’s life, I wrote a post entitled “Happiness Is...”  That was another hard season.  Aaron’s heart was failing and we didn’t know if we had enough time left for his new medication to actually take full effect.  My father-in-law was in the hospital, and ultimately would pass away a few weeks later.  

But it was those little things, the lemon bars at lunch, a favorite cookie dropped off by a friend, the funny bear that hung in the partially constructed building across the way, the bed the nurses made up for me as we got to the room in the wee hours of the morning.  It was those things that helped me through.  And if I’d only focused on the hard times, I would have struggled so much more.

So today, I’m focusing on a couple silly puppies, a granddaughter that lives only down the stairs from me, a son who is willing to drop in to take care of a plumbing problem that truly, I should have been able to do but was beyond my emotional energy.  I’m grateful for sunshine and a job that I can work safely from home.  (I mean, you can’t beat a 20 ft commute.)  I have co-workers that although we don’t see each other in person (never have!) reach out and make me smile.  I love my comfy bed and the fact that my puppy lets me sleep even during the day and waits patiently (most of the time) to get her out.  

I’m grateful for the technology that allows us to still have worship services with others even when we’re not “with” them, and for sons who hold the priesthood and can administer the sacrament so I can renew my covenants with my Father.

And so many, many others things, family who prays for us and we pray for as well, friends across the country, the freedoms we enjoy here in this land.  Is it perfect?  Nope, but neither am I and I think it’s about the best there currently is.  

So there’s some of my ramblings.  Aaron is doing well overall, and we’re hanging in there.  And I’m grateful.

Counting our blessings is far better than recounting our problems.
President Russell M. Nelson

Tuesday, October 6, 2020

Pixie Dust


It’s happening, it’s really happening! 

We’re getting sprung this morning (or afternoon).

See that dark red vial of “stuff”?  It’s packed red blood cells, and I’m convinced, a bit of pixie dust.  

Aaron is doing sooooo much better.  In fact, if I hadn’t had to work last night, we probably would have just gone home. But by the time we made it through the 24 hours post-transfusion, there wasn’t time to get us home before I was working.  So he stayed the night one more time, but this time on the floor.  

I called the hospital at break and he was awake and playing on ten liters.  He was still on ten when I got back about 3 am, but asleep, so I asked if we could turn him down.  He ended up on 4, FOUR liters!!  And there he stayed until he was getting breathing treatments this morning when he came all the way up to FIVE!!!  


So we’re outa here.  He’ll be at home for at least the next few days and then after that, we’ll see.  He’s continued having afternoon fevers and those may stick around for the next few weeks.  In a normal year (what’s that anyway?) it’s not cool to send a kid to school with any kind of fever.  And this year?  Yeah, just not happening.  

But that’s okay.  We’ll be at home where we can see family again, I won’t have a commute, and I can fall into bed just after signing off work.  A real bed, you know, not the chair that folds down that has been masquarading as a bed for the past 2+ weeks.  It’s good, it’s very good.

“All you need is faith, trust, and a little bit of pixie dust.”

Sunday, October 4, 2020

Inching Forward

He’s doing a little better, or at least his labs look that way.  They’re all coming back absolutely pristine, including inflammation markers.  Those go up if the body is stressed at all, and they’re currently at 0.  White blood count has come way down, well into the normal range now.

He’s still mounting a fever in the afternoons, and the oxygen needs go up in concert with the fever.  The only thing that anyone can come up with now is that it may be an antibiotic induced fever.  Frankly, I kinda like that answer. 

His hematocrit is a bit on the low side, especially for a cardio kiddo, so that very dark line in the picture is a unit of blood that’s currently draining into him.  (So now he’s a vampire??  I guess he’s not drinking it so maybe not.)

Anyway, without anything else that can really be done for him, we’re probably heading home soon, probably Tuesday morning, possibly tomorrow.  We’ll see.  Each time he gets sick like this, it’s harder for him to fight it off, fight back.  But it looks like he’s done it again this time.  

And this weekend was General Conference.  I love the talks, the comfort, the inspiration.  And we’ve been here before for several.  But I think we’ve at least watched more at home than we have here.  With everything going on, I wasn’t able to listen as well I would like.  So grateful for the technology that let’s me go back and listen again, over and over.  It strengthens me, inspires me, and helps me to move forward.

I assure each one of you that the Lord knows you, 
that He is aware of your concern and anguish, 
and that He loves you — 
intimately, deeply, personally, and forever.
M. Russell Ballard

Friday, October 2, 2020

Shooting in the Dark


Just a quick update, and a plea for ideas if you’ve got them (especially trach or Trisomy moms).

We’re here, still, for who knows how long.

He’s completed his bactrim antibiotics (high powered, broad spectrum, should get anything antibiotics), labs look good, and have continually trended in the right direction. White blood count is pretty darn normal at this time.  We’ve repeated labs ad nauseum, x-rays, repeat viral panels, just sent (another) protected trach brush.  Cleaned out and looked at his ear drums. Looked at urine, too, and his BMs.  Everything looks good.

But not only has our progress stalled, we’re moving backwards.  Oxygen is back up.  Fevers are returning, 100-101 for the past few days, but 102 today, pretty much afternoon into nighttime.  Last night he acted like he hurt, he was crying.  The team did a complete head to toe exam and couldn’t find anything.  He’s played a little today, but not much.  We’ve looked at everything we can think of.  

And yet, here we are.  It’s been two weeks since he started having fevers (almost to the hour).  Sigh...

Our minds have the need to know. When we don’t know, we make assumptions —
they make us feel safer than not knowing.  And we are pretty much
always making assumptions. 
Miguel Angel Ruiz

Wednesday, September 30, 2020

Not Quite There...

Just kinda a down and dirty quick update.  

Aaron is still sick.  He’s still in the PICU.  And while he’s “better,” he’s not “all better.”  

He’s still running a fever most afternoons (I think we “skipped” his fever on Monday, that’s all) although it’s much lower.  It usually stays below 101.   He’s a little more playful, but sleeps most of the time and isn’t super interactive when he’s awake.  He is back on his home vent (as opposed to the PICU vent) although at much higher oxygen flow.

His labs are a bit wonky as well.  They’re trying to balance his electrolytes as his sodium can’t make up it’s mind where it needs to be, and it also wants to be lower than we want it to be.  Fortunately, he has a deep IV that we’re able to draw labs from, so at least he doesn’t have to be poked multiple times a day.

Long and short:  I don’t know when we’re coming home.  It’s been a long time (almost 2 years) since we had a stay longer than a couple days, so I guess we were due.  It’s harder since I have to go home most evenings to work and then drive back up in the wee hours of the morning.  (By the way, did you know freeways around here are pretty much empty at 3 am?  Like on Tuesday morning, I was almost to downtown Salt Lake before I saw any cars, and then it was just a handful.) 

But I’m grateful we still have a reason to need to be in the hospital.  I’m grateful it’s not behind us forever.  There’s only one way for that to happen, and I’m not going there right now.  So we’ll keep plugging away.  I brought his favorite movie (Peter Rabbit) up and we’ll put it on when he wakes up.  He’ll sit in his wheelchair and even maybe throw pies at his brothers on his computer.  It’s just going to take more time... (Too bad mom is not the patient sort.)

Who forces time is pushed back by time; who yields to time finds time on his side.
~The Talmud

Sunday, September 27, 2020

Itty, Bitty Baby Steps

There’s progress.  It’s slow.  It almost feels glacier-ly slow. (Is that a word?  You know what I mean.) But it is there.

It’s hard to update when I feel like there’s almost nothing to say.  But his fevers are trending lower.  Yesterday he woke up without one, and when it did go up, it wasn’t higher than 101, and it responded fairly well to Tylenol.  Given his heart and respiratory rate, he’s going to have another one today.  You can see it coming.

He does have a lot of bruising.  When he gets a virus, his platelets drop significantly, so as he moves, as we move him, as they do blood draws, etc, the tiny blood vessels beneath his skin break.  It’s not nearly enough for them to be super worried, but they are watching his labs. 

He is still soooo very tired.  But he played for about 15 minutes yesterday before going back to sleep.  It’s not much, it was so short, but he did play.  Before, he would sometimes hit his toys, mostly by accident, or just here and there.  Yesterday mid-day, he was purposfully grabbing and whacking them, and then he was gone again.

When he does desat, he’s not turning ugly colors (as much) as he was before.  He’s still dropping into the 60’s and taking time to recover, but we’re not bagging him, and his color stays (sorta) normal.  We might even need to put clothes back on him soon to keep him from pulling at his g-tube and the leads they put on him to watch his heart rate and rhythm.  But so far, he’s still too tired to really do much with those.   

So there’s that. Not much else.  Child Life made him a cute name banner with Peter Rabbit stickers.  That is his FAVORITE movie.  90% of the time he chooses it.  Good thing it’s got awesome lines ‘cause I think everyone in the house can pretty much quote it verbatim.  

I’ve been able to go home and work the last three days as he’s gotten more stable.  It’s weird, odd, and not a little discomforting to look across the entry into his room and see it dark, hear the silence where we usually have machines humming away.  I’m anxious for the day that it’s lit up with lights and machines and a silly boy moving and shaking in there again.  It’s too quiet. 

“It does not matter how slowly you go so long as you do not stop.”

Thursday, September 24, 2020

His “Spark” is Back


Aaron is one sick little boy.  

The past few days have been hard, very hard.  He’s fevered pretty consistently, and usually between 102 and 104.7, even on all the fever meds he could be given.  On Tuesday, he stayed between 104 and 104.7 in spite of piggy backing Tylenol, Motrin, a cooling blanket turned way up, ice packs, a fan, and no clothes besides a diaper.  

He’s not been interactive at all, no toys, no playing, and no smiles.  Just sleeping or lying there watching.  

He did grow out a nasty bacteria from his trach called Stenotrophomonas, which isn’t always susceptible to the high-powered general IV antibiotic they had him on, so on Tuesday, they added in another one as well.  

But Tuesday, Tuesday was not a good day.  He was maxed out on his oxygen and we still ended up bagging him several times.  Multiple times the nurses were calling for respiratory therapy and doctors showed up as well.  I tried to go home to work (don’t really have any time off yet) and came back after just a couple hours.  Things were bad, really bad, and I was discouraged.  

For the first time in years, I’ve put up collages of him being happy, playing, interacting with siblings. It’s important for staff to be able to see him as he really is, goofy, funny, outside, and not just lying sick and still in a bed. Usually, that’s not an issue.  He’s that way when he’s here too.  Not this time.

But last night, we got a glimmer of our Aaron.

One of the times we called respiratory, we got an RT that has known Aaron from the beginning

And as S. left, Aaron gave him a smile.  The first smile we’ve seen in days. 

As the day wore on, we got a few more, and then he started playing with his toys.

Don’t get me wrong.  He’s still very, very sick.  He’s on the hospital vent between 60 and 100% oxygen.  He’s still running high fevers.  He’s not that playful. But there’s something, and I’m grateful for it.

We’re not going to get out of here any time soon, unless he decides to start sprinting to the finish line. This kid usually takes his time.  However, we will get there, we will make it home. And that’s a good thing.

“The smallest spark can become the greatest light.”

George E. Miller

Monday, September 21, 2020

Unseen Blessings

Last week I was so discouraged. Last week I was so down, couldn't really see the point. After all, there wasn't anything we could do to stop the progression. Slow it down, yes, but stop it, no. 

And then there's this week. Here's how things went down.

Aaron had a really good start to the week but then started getting sick. I didn't realize it at first because the only sign was that he was more tired. The med changes should have made it easier for him, given more energy, but he doesn't always work with the plan, so maybe? But I hadn't gotten around to looking things up yet. 

And then a low grade fever began Friday and he needed  more O2 and really started struggling. We did what we could, Tylenol and Motrin, increased breathing treatments, and tried to figure out if/when he would have been in contact with someone sick. (You know Covid was front and center in my mind, and my fears.) 

Anyway, we made it through Saturday and my first swing shift for work but he was pretty much maxed out on what we could offer. So late Sunday morning we loaded up and came up to Primary's. 

I called the ER on arrival because if it was somehow Covid I didn't want to bring him in and contaminate everyone and everything. The vent would actually make him a super spreader because it aerosolizes his breaths, although by then he was struggling enough that he was on a bag instead of the vent anyway. 

So here we were with fevers that we were treating with both Tylenol and Motrin, piggybacking them, some minimal secretions, and a very sad little boy. 

It turns out he's got rhino and pneumonia, but not Covid (thank heavens!).  So we'll be here for a little while until he is better, hopefully not too long. I'll still need to work so I'll have to go home for that Mon, Tues, Thurs, Fri & Sat. But he'll get through this. 

And that frustrating, discouraging hospital stay 12 days ago? Well, I'm seeing that a bit differently. See, both times we came up with higher oxygen needs and struggling, but the first time he was also heathy. Those changes last week made all the difference in his ability to endure and hopefully fight off this illness.  What I saw as a setback turned out to be a blessing.

"The degree to which I am blessed staggers me… 
the degree to which I take that for granted shames me.”
― John Green

Sunday, September 13, 2020

To Fight the Unbeatable Foe

Some battles can't be won.  Some foes can't be beat.  But we have to fight anyway. 

We've had a rough couple weeks, and now the pain is between my ears. 

It's his heart, again, still, always. and there's not a lot we can do.

Aaron was doing well, quite well, and then he wasn't. 

He's also gained quite a bit of weight, almost 6 pounds since mid-May, and only grown about half an inch.  All in all, not good signs, and then we add in significantly increased oxygen needs, lungs sounding okay (for him) and no sign of illness.

Over the past two weeks, it's gotten worse.  We've had to use his emergency tank, a lot of albuterol, and bag him kinda often.  We do have a couple new nurses, and maybe this is just his way of breaking them in, but seriously, he doesn't need to break them as well.  

It's been rough. He was off school on Monday for the holiday and I kept him home Tuesday and Wednesday.  Wednesday was actually a good day, finally, but it didn't last.  Wednesday evening it was too much.  Once again, bagging and low sats so I gave up and we went in.

In the emergency room, his viral panel was negative and his x-rays looked like they always do.  But his heart numbers, well, they were worse. We have a tiny bit of room to move up on some of his heart meds, but not a lot.  As we went over his nutrition, it appears that he's getting too much free water, so we've revamped that as well.

All in all, other than trying to redo his food and bump a couple meds, we can't do anything.  And he's not sick, so it's not like we're hoping things improve.  We have added another (yes, another) machine, a cough assist which will help clear his lungs and maybe help that way.  

And we came home about 48 hours later because, as I said, there's not much that can be done.

But the reality is, he's getting worse.  It's still pretty slow, but it's clear and noticeable.  

His doctor said we're probably going to have to accept still lower sats.  I remember when he would drop below 90% and we would go in.  Then it was 85, now it's 80%.  I told Dr. D that when we drop into the low 70's, he gets ugly colors.  He agreed, it isn't pretty to see someone that cyanotic, but some kids still handle it.  And yeah, he probably will.  I don't know if I will.  Especially since I know that it will just continue.  

And I find myself feeling a bit like Don Quijote.  It's an impossible fight, I'm tilting at windmills, except they really are monsters, and they are turning me on my head.  But I can't stay down because the fight goes on.  And fight I must because he does.

It's been ten years, 122 months (today) since he was born and his clock started ticking on this earth.  In reality, they told us that day might never come itself, and somehow in my naivete, I thought four months would be enough, I would be happy if he could live four months.  I was wrong, so wrong.  It's been more than 30 times that and it's not enough.   

So this is my quest, to follow that star, No matter how hopeless, no matter how far . . . To be willing to march into Hell for a Heavenly cause.

Because sometimes it is Hell, to hold your child, to administer treatments that he hates but endures without complaint, to know that he will be taken from you, far too early, no matter how far away that is.  

So we'll keep making memories, having fun, getting out when it's safe.  

And I'll keep fighting, I will be true to this quest, this calling.  I will keep working, praying, learning and trying, because he deserves it.  He deserves my best efforts, and I pray that when that day does come, I will know that I have done what I can. Because I know that the world is better for Aaron being here, my family is better for his life, and I am better as well.

This is my quest, to follow that star ...
No matter how hopeless, no matter how far ...
To fight for the right, without question or pause ...
To be willing to march into Hell, for a Heavenly cause
The Impossible Dream

Sunday, August 23, 2020

Learning to Be Still

I'm not sure how it's been so long since I've written.  Maybe it's because I've been struggling.

When I last wrote, I was in quarantine.  As I expected, my test results came back negative, but it was a huge wake-up call to me.  There was no way I could go back into the public schools.
And in July, we lost two little boys whose moms I'm close to, on the same day.  One, little Joseph, had full T18 like Aaron.  I've been with his mom and dad through several hospital stays and we've met up in person at picnics and parties and such.  He was fine, and then he was gone.  It was such a blow!  I'm still trying to wrap my head around it. And with the pandemic going, I couldn't even attend the funeral, although I went down to visit Becca the week before.

So I'm no longer a sub, and that has been hard.  I keep saying how much I miss my students, but it's simply not safe.  It's not safe for the kids or for the teachers either and yet, here we are.

Our schools have chosen to open with what appears to be very little intervention.  Besides masks and getting out an hour early (which means that for secondary students they're not eating lunch at school), not much has changed.  The classrooms are still way overcrowded and so are the halls, and that is from a pre-pandemic perspective.

We went back on forth on whether or not the boys would go to school.

Wanna hear something funny?  The one I'm not worried about at school?  Aaron.  Yeah, him.

His school is taking huge precautions.  He even has his own "tent" that he'll be in if he needs any cares, including suctioning with a closed system and his nurse and everyone in there will be in full PPE, like at a hospital.  And it's his, as in no one else will use it.  All equipment is student assigned, and is cleaned each evening by someone in gloves.  Masks are a given.  Very few students in the room and they temp check and record everyone entering the building for any reason at all.  Earlier I had to take a piece of equipment over and drop it off and I got temp checked.  Yeah, they're pretty much doing everything they can.
science experiment at home

 Then there are the other schools.  I get it, there are waaaaay too many students to do that with, but I felt there were other things they could have done.  We considered keeping them home, but the online options were pitiful at best.  Michael is on an honors track and Andrew has 4 AP classes plus German 3.  I don't see their education going well without significant support which wasn't available.  So they're in school, in person, at least for now.

But the routine we have going is somewhat detailed.  Andrew drives to school, a privilege he can 100% credit to Covid.  No way I want him on a bus.  He drops Michael off at school on Michael's early day and picks him up each day as well since we're also not carpooling.   When they get home, shoes and backpacks go on a shelf in the garage, they go to the laundry room, put masks in a laundry bag, strip and put clothes in the washer, put on a robe, shower, and then put the robe in the washer, too.  They also wash hands after disrobing and before leaving the laundry room.  Masks either have filters sewn in, or have filters inserted to make them more efficient.  They have water bottles with straws so they don't have to take off masks and their own sanitizer.  I've done everything I can to try to keep this out of our home, but they also still have to live a life.
Sensory time, playing with
shaving cream 

I've had people ask why we're send them to school, sending Aaron.  Well, the fact is we didn't save Aaron's life to just exist.  We still need to move forward, experience things.  I don't like this.  I really don't.  But I do believe that we can rise to the occasion and do what is needed.  Yes, I do believe masks work.  I've taken care of Aaron for 10+ years through countless colds and two bouts of flu, including one that I developed two different pneumonias after.  And he didn't get them.  I wore a mask each time and was diligent in washing.  Can they fix everything?  Nope.  Does it get riskier the longer you're in contact?  Yep.  Hence the danger of schools.

Anyway, that's kinda where things are.  I'm now working from home for AAA, and it's going well.  It's an intense learning curve, but I'm making it happen.  I miss the students, but I'm still helping people.  I did a completely crazy thing last weekend.  One pandemic puppy wasn't enough, so now we have another.  I have always wanted a little poodle, and now we have Sophie.  She's soooo funny, and so different than Simba in basic personality.

Simba is a great dog, but he's actually somewhat shy and timid.  Not around us at all, but hesitant with new situations.  When we got him, he was so stressed that he was really sick for about 24 hours.

Sophie?  Not so much.  I didn't do the math until we were on the way home, but she was just 5 1/2 weeks old, actually too young to leave her mother.  She didn't even have the teeth to really chew her food, and I couldn't find the kind of food they'd been giving her, along with her mother's milk.  I have to admit, when I put it all together, I was more than a bit worried.  No need.

I did have to moisten the puppy food I picked up for the first few days, but she didn't seem to care.  It;s food, just give it to me!  She slept through the night almost from the beginning, and treats everything as if it's an adventure.  She was only just over 2 pounds to Simba's 35+, but was thrilled to take him on.  The first couple days, he wasn't so sure.  He'd whine and back up and be very subservient to her.  She just wanted to play.  He's gotten over that, and we do have to intervene in their playtime periodically because he's so much bigger, but they get along well.

So that's where things are in the Peterson house.  Aaron loves petting Sophie, both dogs seem to know they need to be gentle with him.  He's thrilled to be back in school.  We've got a couple new nurses that I'm hoping will work out well.

And we're trying to hang in there.

A couple weeks ago we sang "Be Still, My Soul" for home church and it really spoke to me.  I was anxious and irritated, very much bothered by what was happening with our schools and the danger I feel is coming in opening the way we have.  But I was  reminded that He is in charge.  I need to do what I can, but then leave the rest to Him.  I have done my part, I believe.  I've taken a job that has removed me from the schools.  I wrote to the governor, my representatives, my school board and the state school board.  We have put in place "decontamination" measures for coming home from school.  And my boys need to keep learning.

I have done what I can.  Now I need to leave it in His hands.  That's harder to do than it is to say, but it's what my soul needs.

I need to be still and know that He is in charge.

Be still, and know that I am God.
Psalm 46:10

(And I also need to do another pandemic video.  Maybe next time.)

Monday, July 6, 2020

Where Am I?

Peek a Boo!  You can't see me!
Where am I?

Well, here.

In my room.  On my bed.

Where I’ve been for almost 48 hours with the door closed unless someone is bringing me something.

Am I sick? Yeah.  With Covid?  Probably not.  Almost definitely not.  But I do have a sore-ish, kinda scratchy throat and a (very mild) cough.

And a child with a tattered heart and lungs.

So while everyone agrees it’s probably a mild summer cold, I’m here until proven otherwise.  (hopefully tomorrow morning).  And I’m facing some ugly truths here.

I don’t think I’m going to be back in the classroom this year.  If every time I end up in contact with someone sick I get quarantined, that’s just not going to work.  Have any of you been in a public school in the last few years?  There’s a reason they refer to it as a petri dish.  Kids are fomites, germ factories, they travel and they happily share!  And someone has to be able to confidently care for Aaron around here.

Right now, Andrew and Michael are doing most of his care because they’re home and not going anywhere.  But if school is open (yeah, big if), they need to be there.  So they’re out.

We postponed Aaron’s birthday celebration last month because Joseph had been exposed at work, and because it was a known exposure, a negative test helped but didn’t completely release him from quarantine.  And trust me, you’ve NEVER seen someone so happy to go back to a job that’s not his favorite thing in the world.  I think he literally skipped out the door that Monday.  Because I’ve been careful and we can’t come up with where I might have been exposed, a negative test will release me.

Joseph’s quarantine set-up.
His room and bathroom were beyond the plastic.
It’s a weird time around here.  We don’t do much. At all.  A very kind neighbor lets us come swim in her pool when no one else is there, so there’s that.  And that’s about it.  We set up the trampoline for the first time in years and Simba is always good for some laughs.  But mostly, we kinda drift.

I worry.  A lot.  I worry about my family, about my kids' jobs.  I worry about whether Jonny and Avanlee will be able to go to Saudi Arabia, and when it will happen.  I worry about my parents down in Arizona, where they're enacting crisis triage now because the hospitals are full.  And I worry about what happens here in a few more weeks because so many people think it's just not that big of a deal.  It is!  And when push comes to shove, when there isn't the staff or the room for two more patients, Aaron won't be the one chosen.

I’ve had lofty goals for getting my class worked on.  I mean, there’s nothing else going on, but I find it so hard to focus.  Aaron is back in school, summer school.

We thought long and hard about that one.  But we’re also very confident in the school’s screening procedures and the very low numbers of people actually there.  And frankly, we didn’t save his life ten years ago for him to sit at home and do nothing.  This is about the only thing that he can get out and do.  Right now, it’s probably not that big of a deal.  We are here (even if we are kinda boring).  But come fall when the days get short and dark and his brothers are gone, he needs to have stimulation as well.  And he loves school.

So I hold my breath and pray and send him, so very grateful for amazing nurses who go with him to watch out for him.

On another note, I mentioned I’ve been in my room, holed up, for almost 48 hours.  Yeah, that includes yesterday, Sunday.  We’ve been doing church at home since mid-March, and I’ve been pretty much the driving force.  No one has been coerced, but I’ve put together the songs and conference talk, or reminded whoever has a turn to do so, told them when things needed to be done and so forth.  You know, kinda the one in the middle of all the prep work.  Not yesterday.

It was a very interesting, and moving experience to sit in my room with my door cracked open and listen as my husband and boys sang “I Am a Child of God” and then moved on to the sacrament ordinance.  Sitting all by myself on the side of my bed, there was plenty of time for introspection, and not much in the way of distraction.

Please, wear the mask!!
I’m so grateful for the blessings in my life.  I’m grateful for an eternal perspective.  I don’t know what this next year (or more) will bring.  I’m pretty sure it’s going to be a bit rough and different.  It’s certainly not what I would have wished for for my boys’ high school years, one’s first and the other one’s last.  But people have gone through rough times in the past.  Ancestors of mine have worked hard only to leave everything, including small babies’ graves, behind.  They’ve fought for this country of ours, leaving their families to do so.

Things aren’t perfect, but they never will be.  But I do live in a wonderful nation, one that gave Aaron a chance at life when there aren’t many others that would have.  What a blessing that is for me, and for so many others.

So many thoughts.  I know this is a bit of a ramble, but without structure to my life right now, I find it hard to put structure to my feelings.  We’re kinda in a haze, drifting along mostly.  And I can’t wait to get out of my room...

First three months of quarantine.

"God understands our prayers even when 
we can't find the words to say them." 
~Author Unknown

Wednesday, June 3, 2020

10 until 10

Ten years.  TEN YEARS, GUYS!!!

This guy, he's going to be ten years old on June 13th, TEN DAYS!!!!

Before he was born, he only had a 50% chance of surviving until birth.  What??  Isn't that when we start counting lifespan?  And then when he was born, I was told he had about a 5% chance of reaching his first birthday.

I lived on the edge all that year, wondering how much longer we had.  His first birthday party had more people than at a lot of wedding receptions.  I was so overwhelmed and grateful for that milestone, even though he slept through pretty much the whole evening.

Having reached that milestone, I learned that he had a 60% chance of turning ten.  If someone had told me before that one of my kids only had a 60% chance of reaching ten years old, I would have been devastated.  Instead, I was over the moon.

From 5% to 60% was such a huge leap.  I really couldn't fathom that much time.  Now, I can't imagine life without him.  (Not that I could before either though.)

Anyway, here we are, ten days from his tenth birthday.  And I will forever be leaving behind the days of kids in single digits.  I remember being so excited myself when I reached the ripe old age of ten, double digits and all that.

I had hoped to have a fun birthday party for him this year.  In fact, a friend had offered to throw one for him at a local park with ponies and all sorts of fun.  Obviously, that's off.

We would love for anyone to send a video (he loves those!) or greeting or whatever and we'll read or watch them with him on his birthday.  Because of the pandemic, it will be immediate family only here, and that's assuming that they're all well and the weather is good, because it will be backyard only.

Please, please know we're so grateful for all your love and concern and prayers through the last ten and a half years.  He's not only our miracle, he's everyone's.

Compatible with Joy!

"The first fact about the celebration of birthdays is that it is a good way of affirming defiantly, and even flamboyantly, 
that it is a good thing to be alive." 
~G.K. Chesterton

Wednesday, May 13, 2020

This is Rough -- Week Whatever

Things are rough here, at least in the space between my ears.

I do okay as long as I only think about today.  If I try to think about tomorrow, or next month, or next school year, it's really, really hard.

Economies are starting to open up.  That's a good thing.  I really do believe that.  And governments are trying to put into place ways to keep the vulnerable safe until a vaccine and/or a good treatment can be found.  They're saying that anyone at high risk and anyone caring for them should stay isolated.  Except I think that most consider the elderly to be the only vulnerable population.  There are all sorts of ways to avoid going out if you don't have to work, if you're retired, if you don't have children at home.  So far, I'm not seeing a way to do it otherwise.

There are a lot of high risk people who are not retired.  Many are children whose parents are not independently wealthy, who can't afford to "retire" even for a couple years.  What do we do?

Andrew and Michael need to go back to school, if it's being held.  They NEED  that interaction.  They can't stay locked up for two years.  It wasn't super hard when all their friends were isolating, but now that they're starting to get together again, they want out too.  I need to work.  But it's public school.  A petri dish.  What do we do?  Calling a number for groceries, meds, etc to be dropped off for the next two years isn't feasible.

I think of my high school years, of the time over the past few in the schools and of the crowded hallways, the packed classrooms.  Guys, that's where the memories are!  That's where the good (okay, and not so good) things happen.  I don't remember the lessons from classes much at all.  I remember the interactions.  And as I look at what is being said, and what is not, I don't know that this will happen for the kids next year.  I hear about only a portion of students being on campus at any one time.  That sounds lonely, and scary.  Yes, I know, it's life.  And they'll get over it.  But I ache for my kids, my boys and the kids I've taught.

There is just no good and easy answer to any of this.

I've worked hard to transition Aaron away from the blended diet that he does so well with to a formula, that isn't nearly as good for him.  But if he ends up in the hospital, there's not a good way to get his food to him, and they won't provide a blended diet.  Even more, if I get sick and can't make it for him, he needs to still be fed.  If anyone in our home gets this, all our nursing will stop.  So we'll be dealing with the virus and no help from the outside.  I keep having visions of it being like when Laura Ingalls and her family got malaria, and everyone was so sick and there was no help until someone found them.

Yesterday morning, early, I got a knock on my door.  Andrew was there and had just thrown up.  He'd made it to the bathroom, but it was his turn to get up with the puppy, so what should he do in the morning?  I told him to wake Michael when Simba started whining and tell him what happened.  Okay, fine.  Before this hit, I would have been asleep again before he even got back upstairs.  Instead, I lay awake for over two hours, wondering if Covid had found us, and how.  Was this the start of it?  Where was it going?

He threw up once, that's all.  No fever, no diarrhea, no muscle aches, nothing.  And yet, I still made him stay in his room all day long, by himself, meals and everything.  Normally, if it had been 12 hours and nothing (or sometimes sooner!) I let the kid out.  But no way.  He didn't get to come out until this morning.  And I worried the whole time.

I guess there's a reason that much is written about certain parts of history and how people endure, or even thrive during those times.  How they make people stronger, better, or sometimes bitter.

These are unprecedented times.  We keep looking back to the 1918 pandemic and all that happened then.  I wish I had more writings from people's lives.  My great-grandmother lost both her parents within two days of each other.  She and her brother were placed in an orphanage.  Yet, when I hear stories of all she went through during her life, when I look back on my own memories of her, she was a rock!  She worked so hard, endured so much, and yet was funny and gentle and lived a long life.

So right now, I'll try to keep my focus on the here and now.  I try not to think of what it would have been like if my own high school years had been interrupted like this.  I try not to envision what might be coming.  I'll continue to work with my boys here at home, keep training this puppy of ours, and find time to work on my own schoolwork.

I've started taking a video or two, just a few seconds long, each day to put together once we're done (or once I decide it's been long enough anyway).  It makes me look at things differently.  What do I want to remember from this time?  What am I going to forget about?  What am I taking for granted?

There is a future coming.  I don't know what it will hold or what it will look like, but one thing is certain, it will come.

All the flowers of all the tomorrows are in the seed of today.
Croft M. Pentz

Sunday, April 26, 2020

An Eventful Time: Week 6

Looks like I'm writing about every other week.  At least I'm still writing, right? 

Anyway, it has been a bit of a crazy week here.  The week before was pretty normal, whatever that is anyway. 

We had Easter Day on our own, which was a little hard for me.  I miss my kids, sooooo much!  Sunday dinners are much easier to prepare and clean up after, but I miss the banter and laughter, and the hugs.  I very much look forward to the time we can be together again. 

But this week?  Well.... 

There are people doing different things during quarantine, things that otherwise wouldn't happen.  Us, too, apparently.

The boys, Andrew especially, have been begging for a dog for years.  I keep saying no.  There's not time, there's not a fence, there's not, well, whatever.  Too busy.  Except now we're not.  (I guess.)  So we've been casually looking, and then it wasn't quite so casual.  Andrew really got into it.  He'd spend hours each day looking at classifieds and on rescue pages.  We even had a beautiful German shepherd come out for a "visit."  He was a sweet dog, but not a good fit for us.  And then he found him. 

Meet Simba!  Initially his name was "Lucky" but by the second day he'd warmed up enough that he was pouncing on things, and crouching before!  He even saunters and runs and plays like Simba. 

The boys are loving him, but also learning about sharp puppy teeth and getting up in the middle of the night to take care of him.  It's a learning experience. 

And Jonathan graduated this week.  Finals over, he and Avanlee came out for a porch visit and it was good to see them, but hard not to hug.  Right now, they still plan to move to Saudi Arabia so he can pursue a Masters/PhD in mechanical engineering in August.  But no ceremony, no party, just a hike to the Y on the mountain for the two of them.  I'm so glad they have each other.

Aaron continues to do really well.  His school nurses come work with him each school day for a few hours.  He goes on walks, does physical therapy and is working on counting and understanding coins, among other things. 

Long overdue pictures put up.
I've gotten a start on my own course work, and the Andrew and Michael are moving forward with their own lessons.  We got some sad news as two favorite teachers at the middle school won't be back next year.  We already knew we were losing an amazing principal.  This whole lack of closure is so hard!  We didn't know the lasts were going to be last.  I wasn't even at the schools the last couple days because of the ballroom competition down at BYU. 

I don't know where this whole Covid thing is going to go.  No one does.  Right now, people seem to be saying there's a whole lot of over reaction, blowing things out of proportion.  The medical personnel don't seem to agree.  I just know I don't want to take a chance with Aaron's life, or anyone else's.  I'm more than a little worried that we'll follow the 1918 flu pandemic where the initial wave, the one in the spring, really wasn't that bad, but then when things were relaxed, it all blew up in the fall.  I've gone over my boys' schedules for next year wondering which classes are going to be very difficult to do online.  You know, choir, band, that kind of thing really needs a class. 

But at the same time, the slower pace is also kinda nice.  I like waking up about 7 and relaxing in bed for a little while before getting up and going.  There would be no chance for a dog with all the school and soccer and scouts.  Everyone is at dinner each night.  We've watched more movies in the last six weeks than probably the last six years.  Everyone knows when bedtime is, and it's late enough that there aren't (many) arguments.  Aaron spends a lot more time out and about with us because he's not so tired after being at school all day, and neither are we.

It's just a new, strange way of life right now.  But we're all still alive, and enjoying life, while also missing the old stuff.

"When we are no longer able to change a situation, 
we are challenged to change ourselves." 
~Viktor Frankl