Monday, December 26, 2016

Acceptable Gift

Christmas has always been a special time for me, and even more especially over the past six and a half years as I've come to know and rely on Him at a more personal and intimate level.  And I know He loves me, the whole me, gray hair, short temper, fears and all.  But sometimes, (often?) I feel insecure, especially around other people.

Placing the Christ Child on
the Nativity Advent.
A few weeks ago, a friend asked if I'd like to join her family in providing a musical number for Christmas Sunday.  How fun!  And then as things evolved, as they always do, it changed.  Her family would do a number, would we like to do one as well?  Okay, that can probably work out.  Except my family is scattered more often than gathered.  But probably...

It took until last Sunday night to all come together and reach a consensus.  By then, there was a third group involved, too.  But Christmas mornings are best with lots of music anyway, so it was all good, at least in theory.

Enjoying Christmas music on his
Wish TV
Until Saturday night, Christmas Eve.  We had practiced as much as we could, but with school schedules, and work schedules, and our accompanist (oldest daughter, Deborah) moving into her new apartment, well, it wasn't very often.  Plus Michael who was going to sing the solo at the beginning was coming down with a cold.  And I realized something I hadn't thought through before.  Both my friend and the other family have members who make their living with music, as in get paid to perform, not just give lessons, neither of which any of us do here.

All lined up and ready for Christmas.
I was feeling very inadequate, under prepared, and yes, afraid.  Afraid that it wouldn't come together.  Afraid that instead of adding to a Christmas Spirit, we would take it away.  Afraid that it just wouldn't work.  If I could have gotten out of it on Saturday, I would have called it off, but by then programs were printed and I felt like we needed to go ahead.  But I was scared.  Not uneasy, scared.

I told Michael (who was also really nervous) that having practiced as much as we could, we had the right not to just ask for heavenly help, but to expect it.  But I still worried.  I did know that He would accept our offering, but I couldn't see Him in the congregation, just lots and lots of neighbors and friends, and strangers.  I tried to find the balance between looking up, but not making eye contact.  Ever tried that?  It doesn't really work well.  And we started.

All the kids "together" on Christmas.
Tender mercies.
And Michael's voice rang out, clear and pure, "O come, O come, Emmanuel, and ransom captive Israel."  The rest of us joined.  The second verse Mary, Michael and I sang the beginning and Joseph and David took over halfway through.


Somewhere in there, my friend caught my eye, the one who'd originally asked us to sing, the one whose family is incredibly, and professionally musically talented.  And she was smiling.  A gentle, warm, grateful smile.  And I knew our gift was acceptable, not only to the Christ Child and His Father, but to the rest of those listening.  And I had to blink back tears.  Her smile was the gift   needed



When we give what we can, He will accept it.  And what a blessing when others can be touched, too.

 The message of Christmas is that the visible material world is bound to the invisible spiritual world. ~Author Unknown

Sunday, December 18, 2016

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.

video

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


Sunday, December 11, 2016

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



Monday, December 5, 2016

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