Rough Spot and Getting Over It

We've had some rough times this week.  It's been busy, and sometimes good, but there were events on Thursday that reminded me just how fragile life is, and how much trust I have to have for him to be able to leave me, and how much training needs to be in place.  And it kicked the PTSD back into high gear.  So even though it was "only" a few hours, the effects on me and my body have lingered.

Thursday afternoon I was home, talking with my husband.  I was actually just getting ready to do something, but I have no idea now what that "something" was.  My cell phone rang and the caller ID said, "Dan Peterson."  I picked it up saying, "oh, this isn't good."  You know, I realized later, they do call me from time to time, and it's usually about a meeting, forms, you know, logistical type things.  But I knew in my gut this wasn't that kind of thing.

The school nurse identified herself and said, "Aaron is having an emergency."

"I'm on my way," grabbed my purse and ran.  As I drove out of the driveway, I called her back. Aaron had dropped his sats into the 50's (50's!!!, 50% oxygen in his blood!!!!!) the nurses had changed his trach and he was doing better, and 911 was there.  I told her she was not to let them transport him until I got there.

I drove as fast as I could, almost praying for a cop.  There was one, but he was on the other side of the road dealing with a minor fender bender and paid me no mind at all.  And of course, the high school had just let out.  So why is it when I need to hurry, these kids decide to drive the speed limit (sorta)?  I just wanted everyone to get out of my way, and prayed and prayed and prayed.  His school is only five miles away.  It felt more like 50.

I whipped into the first parking space I saw, nowhere close to staying in the lines, and ran into the school and down the hallway.  He was lying on the floor, looking oh so sad, but at least not all gray and blue.  I almost started crying myself.

The trach they took out had a big, ugly blood clot in it.  We'd been suctioning a bit of blood out for the past few days and the thought is that a scab came loose from wherever he'd been bleeding from and blocked the trach.  He had been choking to death.

I took him across the street to the American Fork Hospital just to make sure we weren't missing anything.  His chest x-ray looked just like it always does, his labs were perfect.  And he started laughing at everyone.  So we came on home.

And instead of going to work, or running errands, or anything like that, I stayed close to home on Friday.

But it wasn't all bad this week, and I'm trying to focus on that.

On Monday, Santa came to his school and visited with each child.  They held up a picture board so Aaron could tell Santa what he wanted.  He wants music.  Yep, that's Aaron.  His nurse caught a cute video of them interacting and especially with the events later in the week, it brings tears (happy tears) to my eyes.

My mother sent my Christmas ornament for this year.  It's a butterfly that she made.  Butterflies are my favorite. They symbolize the children who've left us too soon.  Beautiful, fragile, and touching.  It reminds me of the caterpillar that crawls into the cocoon and emerges as something so much more.

And this morning, I'm listening to beautiful relaxing hymns.  I'll go to church, take the Sacrament, and remember that even though sometimes it's hard, sometimes heartbreakingly so, there is hope.  There is life after death.  I know it. And I know that what waits on the other side is so much more than we have here.  But I'm still holding out for more time on this side of things.

But there is a resurrection, therefore the grave hath no victory, and the sting of death is swallowed up in Christ. He is the light and the life of the world; yea, a light that is endless, that can never be darkened; yea, and also a life which is endless, that there can be no more death.

Mosiah 16:8

A New Angel for Christmas

Yesterday, at 4:14 p.m. Utah time, a friend's daughter became the newest Christmas angel.

My heart is broken.

Sweet Lily was almost four weeks older than Aaron and like him in so many ways.  Lily didn't have Trisomy 18.  Her genetic makeup was so individual that her doctors referred to her challenges as "Lily Syndrome."  But both kids were trached and vent dependent with crazy oxygen needs.  One day high, another low.  Both of these kids could swing from doing amazing to rushing in within minutes.

I can't even remember when and how Danielle and I connected.  It seems like she's always been there.  And "there" was often in the hospital.  We weren't often in the PICU together, but we'd pass as one was brought in and the other sent to the floor.  We spent enough time as neighbors on the same floor unit that we joked about putting in a window between our rooms, or even a door, much better!

There is a favorite cookie of mine up there, it has chocolate chips, coconut, oatmeal and macadamia nuts.  I found one in my room one morning and the nurse wouldn't tell me where it came from.  I knew it was Danielle.

She was there three years ago (right next door where we wanted to put in that window) when Aaron finally turned around a bit, gathered some energy, and serenaded the unit after being in really rough shape and sleeping 22 out of 24 hours for several days.

There was a time when Aaron was in with a cold and Lily was there already.  We were on the floor, but not doing well.  His doctor kept popping in and out of the room.  (That's not a good sign, you don't usually see them between rounds unless there's a problem.)  I knew Lily wasn't doing great, either.  He mentioned that he had to go to a care conference for another patient, but he would be right around the corner and could come quickly if things deteriorated further. I figured it was Lily.  He did excuse himself from that meeting to check on a patient.  Danielle was certain it was Aaron.  We were both right.

Lily cheated death so many times.  So many times the family was given "the talk."  When things like that happen over and over and over again, you kinda figure they'll keep on happening, with the same outcome.  They're sick, very sick, they rally, and life goes on.

Except not this time.  Her lung disease had progressed to the point where she wasn't going to "come back."  Her body was done, she was so frail.  Her spirit was strong, but her heart and lungs were just too scarred.  Danielle describes it as beautiful and peaceful.  I have no reason to think that it wasn't.  I also know beyond a shadow of a doubt that there is immense, indescribable pain.

I have been in tears since she first told me a few days ago that things weren't going to turn around this time.  There is a huge, Lily-sized hole in their lives, and in mine.  There will be silence where there was once the gentle hum of machines, and the quiet-breaking sound of alarms.  There won't be middle of the night feedings or trach cares to do.  There won't be breathing treatments, diaper changes, nursing schedules, supply orders.  There won't be snuggles and sighs and warmth.  They're all gone now.  All that was so much a part of every waking, and sleeping, moment of Danielle's life for the past six and a half years.

All gone.

Lily is fine.  She's free, she's at peace.  They will see her and hold her and love her again.  That will come.  But for now, it hurts, it hurts beyond measure.  And I ache for my friend.  Her life will go on, but it will never quite be the same.

Grief never ends ... But it changes.  It's a passage, not a place to stay.  Grief is not a sign of weakness, nor a lack of faith ... It is the price of Love.

Author Unknown

The Most Wonderful Time of the Year

It must be December because life just sped up again.

We claim the fourth guy from the left.

We had a ballroom concert and a cub scout service project.







One of Michael's requirements was to come up with, organize, and carry out a service project.  He chose to collect stuffed animals to donate to our local fire department to give to kids they help.  He really got an amazing response!  You should have seen the look on the paramedic's face when he dropped them off.  Having taken more than one ride with a kid in the back of a rig, I can tell you they will be much needed and loved.

The kids I managed to get to the party.  It's been a
while since I got a family Santa picture. 

We also had our church Christmas party, complete with the big guy in red himself.  Aaron wasn't too sure what to think of him.  It's his seventh Christmas.  Seven!  I still remember sobbing over his cradle on his first Thanksgiving saying I just wanted one Christmas with him.  We almost didn't get that.  He was lifeflighted less than 24 hours later, nearly dying on his way to the hospital.  Seven, such an abundance of blessings.

He's actually not doing as well as we'd like him to.  He's struggled quite a bit this week.

2010

We even went in today for x-rays and labs to make sure he didn't have something nasty that wasn't quite full-blown yet.  Fortunately (I think) he doesn't.  The up side is we're not heading to the hospital.  The down side is we don't know what's going on.

2011

2012

Each day has had some tough moments.  I'm grateful for so much support here in the home.


Without a monster oxygen tank and some nifty devices, he's be in the hospital.  But so far, he'd maintaining at home, and still going out to make memories with us.

2013

2014

2015

2016

"Like Thanksgiving, the spirit of Christmas was never meant to be shut up into a single day."  Robert Flatt

Tradition

In Fiddler on the Roof they sing of tradition.  It's what bind them together, gives them their identity, allows them to feel secure in their place.  

We also do the same thing, whether is Monday Family Night, putting up the Christmas tree, back to school shopping, whatever.  Tradition anchors us, and also allows us the freedom to explore, knowing that we have a home base to come back to.  

I remember the first few years after we got married trying to put our two different Christmas morning traditions together.  It was actually kinda hard. 

See, William came from a family that got dressed, had a big Christmas breakfast all together, and then waited for Dad to check on whether the big guy had come.  

At my home, we weren't allowed up until 6:00 (I never slept Christmas Eve as a child, and that lasted well into my adult years, too) and Christmas was the one morning we were allowed chocolate before breakfast.  We could get into our stockings anytime after 6:00, but couldn't touch the rest of the presents.  And cinnamon rolls with chocolate chips were breakfast.  Yum!  

And since there's only one Christmas morning a year, we really needed to find a way to combine them.  Like I said, it took a little while, but when we sat down and talked about how the idea was a happy Christmas morning, with parts from both so we could incorporate both of our childhoods, it actually worked out pretty well.  Tradition, our own tradition.

Then a few years ago, we added in another tradition.  In 2013, Aaron was in the hospital for Thanksgiving, and somehow William wasn't all that interested in doing the big turkey dinner all by himself.  He took a poll, and no one else (at home) was real interested in doing it at all.  So they decided to do a Charlie Brown Thanksgiving.  And they loved it.

Now, before anyone goes feeling sorry for this poor neglected family of mine, understand that I had to fight my kids the next year to get my traditional Thanksgiving back.  (See, there's that word again:  tradition.)  We compromised, a lot like we did with Christmas celebrations, and now we do the big meal with china and crystal on Thursday, and on Friday when we're all exhausted from putting up the Christmas decorations, we have our Charlie Brown feast.  After only a few years, the tradition has been declared.  It is what it is.  Although I've been warned that if we ever disappear up to the Big House on Thanksgiving, the turkey dinner is the one going out the window.  

But I think the most important part of Thanksgiving is having our family around, our crazy, silly, sometimes cranky and tired family.  And while we haven't all been together for Thanksgiving since 2012, we all know where each person is.  And everyone knows what to expect, whether they're here or not.  The traditions bind us together even when we're far apart.  

And I'm grateful, so grateful.

“Tradition is not the worship of ashes, but the preservation of fire.” 

― Gustav Mahler

One Little Monkey Jumpin' On The Bed

Yesterday, Aaron managed to accomplish something that most children do by the time they're six months old.  He's (almost) six and a half  years.  He fell and bumped his head.

Our little turkey (okay, monkey) rolled over, which is awesome!!  Except he did it on the edge of a table at physical therapy.  And he fell off and bumped his head.  And yep, mama called the doctor, and both mama and doctor figured he's probably just fine.  But the doctor (and principal, and everyone else) said, no more monkeys by the edge of the table.

The table wasn't very high, only about 18 inches, and they put ice on the bump right away.  In fact, by the time he got home from school, I couldn't even tell it was there.

And his brothers have gotten a real kick out of telling him, "no more monkeys jumping on the bed."  Hopefully, they're also taking their own advice.  And really, compared to over the years, this has been pretty minor.  We've had chipped teeth, broken bones and numerous bruises.   I think we've got this.

In other news, he's started another new medication, but we were able to stop an old one. The new one is once a day and the old was twice a day, so we're down one dosing.  Yea!!

It'll be up to 12 weeks before we really see a difference, but he's doing quite well.  He's even back to breathing on his own for a few hours every day.  I apologize for not updating more, but typing is rough when you try to use one hand.  It's hard enough to keep up with my thoughts with two hands. Using one really bogs me down.

In the meantime, he's back to singing songs and telling us what's what (so to speak).  He's back in school and loving it, except the bumpy parts.  Today his school nurse couldn't be here, so he went up to the hospital for some meetings with me.  I tried to get some pictures, but he was playing the "won't look at the camera" game.  I think he almost won.

"Mix a little foolishness with your serious plans. 

It is lovely to be silly at the right moment." 

Horace

Perspective

These three cuties are all now registered
voters.  Where did the time go?

Along with the rest of the nation, I was shocked and surprised when Trump won on Tuesday.  Along with many I had deep reservations about the man.  And along with many, I had prayed and studied hard before making my decision of who I wished would be in the White House.

That said, I believe (I hope) most Americans also did so.  I don't think anyone went to the polls thinking, "Oh, boy!  I really hope that by voting for __________ I wreck our nation."   I know in our home, we didn't all vote the same way, but we all love our country, and we each put our voice behind the one we thought would do the best job.

But it's one person.  Yes, it's a person with a lot of power now, but it's also one branch of a government that was established by our forefathers with a system of checks and balances.  And I believe in it and I trust it.  And I will continue to talk to and email my representatives, both on the local and national level and express my thoughts and concerns.

But I refuse to think the world has come to an end, or that we are finally being delivered.  In four years, we'll have another opportunity to do the same thing again, although I hope without all the hate and fear mongering.

However, let me share some other stories that have also been in my newsfeeds, ones that I think hit a lot closer to home, and are frankly, in quiet ways, more important and have a longer lasting impact.

On Tuesday, in addition to all the nasty political posts, I saw a picture of a mom with her toddler.  The little girl was lying, "asleep" in a hospital bed.  But it was much more than that.  Tests had just shown that this precious daughter had no more brain activity, and Mom was having to break the news to the siblings that their little sister wouldn't be coming home.

On Wednesday, another friend posted that her husband's tumor had shrunk.

Others are experiencing life events, too.  Little ones admitted to the PICU, others babies being born to happy families.  Wedding anniversaries, birthdays, soccer games.  We've been experiencing the "practice" in the practice of medicine with Aaron as we tweak one thing and then another, and then revisit some old issues in new ways, trying to optimize his health.   Frankly, none of these have been much affected by the polarization that seems to exist in our country right now.

We're all Americans.  We live in a wonderful country.  Are there problems?  Sure. Are we everything we could be?  Of course not.  But we're trying.  And we need to try harder to come together.  To see each other not as enemies, but as fellow citizens who want what's best for our nation.  We have different ideas.  That's okay.  Our great constitution was a matter of compromise, painful, soul searching compromise, but the men who wrote it came together for the greater good.

We need to do the same.  We need to put down the insults and stop hiding behind our fears.  Believe me, I understand them, at least some of them.  My own son could face repercussions from this election.  I'll have to redouble my efforts to advocate on his behalf, to help others see the value in his life.

But truly, I believe that the area we have the most influence, and the area where we are most likely to need to change, is right within our reach, our homes, our communities, our online outreach.  Let's pull together.  Let's be Americans.

"Your success as a family... our success as a nation... depends not on what happens inside the White House, but on what happens inside your house."

Barbara Bush

He's Happy Again!

Just could not stop laughing at me last night.

He's back.  My happy, playful, silly bug is back.  We've seen glimpses of him, but for more than a month now, that was all.  Brief signs of the child we know and love so much.

This week, we've made some medication changes, tweaked some other things like feeding schedules, had a follow-up appointment with cardiology.  But I think the biggest change was unscheduling an asthma med.  His new heart med can cause bronchospasms, so we've been pre-medicating to avoid those.  But the albuterol (asthma med) can also cause a high heart rate.  It got to the point where he didn't sleep for more than an hour or two at a time, ever.  It's hard to do much of anything when you're that tired.

One of his 15 minutes sleeps.

And I knew I was tired.  On top of everything else, I covered three out of six nights last week.  Plus another child's bus had a (minor) accident coming home from school.  There was another crisis that came to a head.  Plus my right arm has gotten to the point where I can barely use it again.  (can I say typing one-handed is pretty darn slow?  We won't talk about all the typos.  I hope I'm catching most of them.)

Then wild man who should have still been sleeping.

That's how my week started off.  Lots and lots of worries, not much sleep, and was this the way things were going to have to be?

Was this the beginning of a more permanent decline?

I held my own breath as I made the decision to stop the pre-medication, hoping it wouldn't make his breathing worse, and that we could respond in time if it did.

Actually really relaxing, for the first time
in way too long.

Not only did it not make it worse, he slept from 2 pm Monday until 2 am Tuesday, woke for about 30 minutes, and then slept until time to leave.  He napped more Tuesday and yesterday more than usual, but again, it was peaceful, not restless.  And he's back to his active, happy, teasing self.

And me?  Yesterday when he went to school, I went back to bed and didn't get up for six hours, that after sleeping for over eight the night before, and I was still more than ready for sleep by bedtime last night.  I hadn't realized the extent of the emotional drain on my body.  But things are really looking up on all fronts.  I can feel the stress leaving.  We can do this.  We can do hard things.  Just not all the time.  And I think (I hope) we might be getting a breather.

"There is virtue in work and there is virtue in rest.

Use both and overlook neither."

 Alan Cohen