No Answers

Not sure where to begin with this one.

Monday, Aaron went back to school.  He was doing well, and seemed excited to get out of the house.  He did seem to be experiencing a little discomfort, but I wasn't sure. He did well at school and then went to cub scouts with Michael and I, where he saw some of his friends, the Lone Peak paramedics.

Monday night he struggled a little more.  More oxygen, less smiles.  But nothing else.  I considered keeping him home.  Through the night, he still was restless so I sent out texts to his nurse and bus driver that I was just going to watch him.  I guess he thought he needed more attention than that.

Watching TV upside down in his bed. Silly boy.

I ended up bagging him five or six times over the course of the morning, and about 10 o'clock, loaded him up for a trip to Primary's.

What's going on?  We just don't know.  We really don't.  He hasn't acted like he was in pain since sometime early Tuesday morning.  He has no secretions, none.  He has no fevers.  His x-ray looks really good (okay, good for him).  His labs are just about perfect.  Heart rate, breathing rate, totally normal.  Nothing.

Nothing except he's requiring a minimum of eight liters of oxygen while asleep and ten when awake.  But I guess we'll be grateful for the ten.  Above that, and we transfer to the PICU.  Great people down there, love having lunch with them, don't really want to need them.

So we wait and we watch, we pray and we hope.

Outside my window has been a bit dreary today.  It's been cloudy and rainy (and even a little snow!).  There's a covered bridge to the next building, and beyond that, downtown Salt Lake.  Just over the top of the bridge, I can see the spires of the Salt Lake Temple.  What comfort that brings to me.  A reminder of the temporary nature of this life, but of much better things to come.  When the dark comes, the lights shine bright.  I wish my camera could really capture it.  I'll have to take a picture with my heart.

"All the darkness you may be experiencing cannot dim the light of a single candle. Have hope."

Author unknown

Refocusing on Joy

Well, we're a week post-op, and he's being a kid.  He finally got rid of his ear cup, and while the site continues to ooze a little, he (mostly) leaves it alone.

But it's been a long week.  Aaron being home from school to recover meant that he went everywhere with me, including grocery shopping.  Let me tell you, that was a sight to behold I'm sure.  Pushing him in his wheelchair and pulling a cart.  We were not inconspicuous.  I also took work off so I could be by him and keep his sites clean, and while it was nice to have some time off, it also allowed for a lot of thinking time.  Not always a good thing.

See, when the anesthesiologist takes extra time to make sure you understand the risks of your son's surgery, when he tells you that his odds of dying in the OR are exponentially higher than a typical kid's, when you have just the day before attended another little one's funeral, well, you can see where things are going.

Another mom put all this into words for me last week when she wrote about her child.  To paraphrase, the hard part of having a medically challenged child is not your day-to-day.  It's not the breathing treatments, the equipment, the extra people around.  It's not the tube feeds, diapers or time it takes to move around.  It's not the crazy learning curve where you feel like your brain has been blasted into outer space.  It's not even the lack of sleep.

The hard part of having a medically fragile child is knowing that some day, and you don't know when that day will come,  you will have to hand him back to God, and stay behind.  The hard part is the work that has to go on between your own ears, in your own head, as you try to wrap your mind around what will happen, but still live in the moment and love the child you have. It doesn't matter if it's this week, or ten years or more down the road, having to let go will happen, and it will be excruciating.

Add all this together, plus exhaustion and a million things you "have to do" ('cause somehow the world will fall apart if you don't do everything, right?), and yep, I was struggling.

But every six months, our church has a worldwide conference.  We gather in meeting houses and homes to listen to counsel from the Prophet and other General Authorities.  The promise is that if we will prepare for Conference, there will be personal guidance, directly for us as individuals, in our own lives.

I'll be honest, on Saturday I didn't get much.  Saturday morning I missed because of a soccer game.  And Saturday afternoon, well, I was grumpy.  In the words of one of my favorite authors, I was having a Jonah Day.  Everything was conspiring against me, too much to do, no desire to do it, and so forth.  And frankly, I didn't want to be inspired, not yet.  I just wanted someone to put their arms around me and say, "it's okay, you're okay."

But Sunday, oh, Sunday.  It was everything I could have asked for and more.  It was as if the speakers had sat down and said, "Okay, here's Rebekah.  What is it she needs most? How can we get through to her?"  Never mind the millions of others who were watching as well.  I was taking notes, but couldn't even come close to writing fast enough.  The first one that really hit was one on Joy.  On having joy regardless of our circumstances. Elder Nelson related the story of Eliza R. Snow and some 80-plus women and children crowded into a small cabin in the winter after being driven from their homes.  Physically, it must have been awful.  But she described it as a "very merry night."  I immediately felt chagrin for my own attitude.  Plenty to eat, warm comfy house, no danger, yeah, I was in much better circumstances, and not nearly as grateful.

And that opened the door of my heart for the further messages. Messages about love, forgiveness, repentance, trials building character so we can reach our divine potential.  Faith, parenting and teaching, counting blessings, and so on.  Like I said, as if they knew exactly what it was I needed to hear.  And while I know the men and women speaking didn't know me, I also knew that my Father in Heaven does know me, and He loves me and knew I needed to hear what was said.

So now, I need to repent of my attitude, cultivate a lot more joy and gratitude, and watch Saturday's sessions again, this time in with a proper frame of mind, a willingness to be taught, a desire to learn.  I'm so grateful for today's technology that makes this possible.  My focus is being refocused.

The joy we feel has nothing to do with the circumstances of our lives, and everything to do with the focus of our lives.

Elder Russell M. Nelson

Further Adventures

Well, we did make it home on Sunday....

And went back on Monday.

Fortunately, it was very short, like just the afternoon.

Aaron has gotten pretty good about keeping the cup on his ear, except he did pull it and a bandage off Monday afternoon.  And with that bandage, came blood, quite a bit of blood.  So back we had to go to get it checked out and rebandaged.  Fun times, let me tell ya.

But we're back home again.

Recovery can be much more fun when you get to sit back and watch movies on a big screen.  A friend gave him a gift card for some new movies.  Up was the first one he chose, and he is loving it.  I'm loving that he's happy.  And home.

Life is either a great adventure, or nothing.

Helen Keller

Surgery!

Pre-op photo op

We've been (I've been) on countdown to surgery for the past few weeks.  Thursday morning was T-5 days.  And then suddenly, time sped up.

Actually, we got a call from the hospital Thursday afternoon asking if we wanted a spot on Friday.  Yeah, the next day, less than 24 hours.

My first thought was, "can't do that, there's so much I have to do!"  But my second was, "that's five days that I don't have to worry about him getting sick and making us cancel."  Yep, we took it.

Dropping off one last care package for Matthew
before he heads to Canada on Monday

I'm not sure what it was:  the fact that we'd (finally) made it to surgery after rescheduling three times because of illness, that I just know too much now, or the three funerals I've attended in the past few months for T18 babies, but I was really nervous about this one.

The rock settled in my stomach as I hung up the phone and just sat there as I rushed around, rearranging work schedules, nursing schedules and tried to think of what I was missing.  I put together a final care package for Matthew to drop off early Friday morning and sent out texts to family members, blended up meals to freeze to take with us for him, and threw laundry in.  All the while, the prayer kept going heavenward, "please let this work, please let him come through okay."

Identifying the surgical sites.

He did really well, and I'm so grateful.  It took about three hours, but he couldn't have done better.  I was so glad to see Dr. M come into the waiting room with a smile on his face.

Turns out that his right ear DID have a tube in it still.  But it was completely blocked up by tissue, so essentially useless.  They got it cleaned out and working again, could actually see it moving the way it's supposed to.  There was a lot of junk (debris in the doc's words) in his outer ear, but not as much in the middle ear, which is very good.

Very cute pillowcase that "Jars of Hope" sent to him.
It got here Thursday, perfect timing!

His left ear was a bit of a bigger challenge.  Not only was his mastoid bone diseased, but so was the 2nd of the three small bones in the middle ear, the incus.  In fact, it was in such bad shape, that they had to remove it as well.  His ear canal is now open to the mastoid bone and it will take some time for it to heal.  Hence the lovely cap that he wears over it.  They could not put a tube in that eardrum due to all the infection and removal of the spongy area in the mastoid plus the bone, so we'll have to keep an eye on it, and (my guess is) try to put a tube in at a later date.

Right now, he's got the cap on his ear, mostly 'cause he's asleep.  Our job is to keep it on for the next week.  He's pretty sure his is to take it off and wave it around.  It's a game, and he's winning.

He's still on too much oxygen to be able to come home today, but maybe tomorrow.  For now, his pain is well controlled, he's happy, and I'm grateful.

I found this boat that someone crafted when I went to find something to eat in the Ronald McDonald Room last night.  Figured given all the rain we've had in the past few days, it was very appropriate, not to mention, quite cute.

Wherever I have knocked, a door has opened. Wherever I have wandered, a path has appeared. 

~Alice Walker

It's That Time!

Can you feel it?  It's that time again.  Days are warm, but nights are crisp.  Leaves are turning colors in the canyons.  School bells ring and sniffles start.

Yeah, sniffles...

Coughs, colds, fevers, flu.

Influenza.

It's actually already here, making itself known.

It's still classified as "low activity," but it's not "minimal" or "absent."

And guess what?  Flu shots are here, too.

They're everywhere.  Doctor's offices, health departments, even your local pharmacy.  BYU is doing a flu shot clinic where they're handing out free t-shirts with the free flu shot this Friday.

I got mine when I went to Wal-mart to pick up some things earlier this week. It's easy, everyone can do it.

Refs...

Soccer players...

Even Extremely Awesome people.







So just do it.  Yeah, I've heard some people say they feel under the weather afterwards, and one kid did complain that his arm hurt.  But really, for the vast majority of people, it's a minor annoyance.

However, for others, like kids with heart or other transplants, or cancer patients, you're their first line of defence.

And for kids like mine, if you're willing to do it, it can make the difference between this...

And this.
















Or this.

Isn't he worth it?

"An ounce of prevention is worth a pound of cure."

Benjamin Franklin

Family "Things"

This week has been a difficult one for me, emotionally and physically exhausting.

On Tuesday, I was sure Aaron was staring down the road with C.diff again.  Wednesday, Matthew left for his two-year mission for the Mormon church.  There's been a lot going on with trying to keep Aaron stable (2 1/2 weeks to surgery) and get Matthew launched.

And now I've got a big Matthew sized hole in my home.  It's hard.  Not nearly as hard as it will be when Aaron goes "home", but still, I miss him, a lot.

But since we had everyone together this summer, we did manage to get family pictures updated.  A wonderful friend came out and did them for us.  If you're looking for a photographer, especially one used to dealing with kids, I highly recommend embre photo.  Love what he did for us.

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 Then there was this last Sunday.  Deborah really wanted to do a family Christmas present.  Except we're going to be missing a family member come Christmas.  So she told everyone that they needed to be here for Sunday dinner.  Didn't hurt my feelings at all.  Last family dinner we'll have together for at least two years, and probably four.  But she wouldn't tell anyone (except Dad and me) why.  Then the unveiling, and lots of laughter.

I've had people tell me we're "perfect," our kids so well behaved, always doing what they're supposed to.  And yeah, our kids are pretty good.  By and large, they're people I like spending time with.  But hey, believe you me, we are very much human.  And remember those "Things" from Dr. Suess?  Yeah, they certainly created a lot of havoc and mahem!  And so can mine.

So while we have the great shots of our family all looking the same way (mostly) and smiling and acting civilized, my kids will tell you that these shots are probably more true to character.

 And besides, they make me laugh.

“The family – that dear octopus from whose tentacles we never quite escape, nor, in our inmost hearts, ever quite wish to.” 

- Dodie Smith

When You Wish Upon a Star...

 It's been just over a year since we applied to Make A Wish for Aaron.

It was hard, a lot harder than I thought it would be.

To apply is to admit that you child will not grow up, is not supposed to live, may only have a short time left.

It's not as if this was unknown, a surprise, but to admit it, well, that's another story.

It's hard.

Trying to figure out Aaron's wish was also a challenge.  So many travel, go to Disneyland, Disney World, or other places.  Except that only children under the age of 18 and living in the home can go.  And really, I don't know that Aaron would enjoy it.

We finally settled on a big screen TV with the "things" to go with it.  And we got it just right.












He LOVES it!  So far, the only time he's seen a full-sized TV has been in the hospital.  Otherwise, his biggest screens have been a small tablet or a laptop computer.

Thursday night was his star raising party.  He was celebrated by family and friends and we raised a star up to the ceiling in his honor.

When you wish upon a star
Your dream comes true