Sun and Shadow

Dear Aaron, 

This morning I was running a couple errands early, although not as early as I did on Saturdays when you were still here. Then I had to be back home by 8 to sign out a nurse. Today I didn't leave until almost 8:30. Whatever...

Anyway, the sun was peeking over the mountain, just barely. As I drove, sometimes it hid, sometimes a tiny beam shown, sometimes the full glory appeared. 

I'm starting to wonder if that's a metaphor for what I'm dealing with.

Sometimes I'm okay, even happy for you, at peace knowing you're whole again and just grateful for you, your lessons, the gift of you and a much longer life than we had expected. Sometimes that joy is tinged with the pain of missing you.

Sometimes it's dark, overwhelming, aching pain of your loss.

And sometimes it vacillates pretty quickly along the spectrum. 

I don't cry every single day right now, but still on most of them. And there's days where everything moves pretty smoothly, okay, and then suddenly it hits all over again. A song, the stoplight by your school, something I see online, a memory. 

A smile, a laugh, and then followed by a sob. 

Or even the other way around. 

Today is General Conference. Today we hear from the prophets. It will be a different experience. Daddy and I are both getting better but we're not 100%, so no one will be joining us. From weekends with a plethora of snacks, blankets and pillows on the floor and plenty of "shhh, I can't hear," or ones in the PICU with it playing on the TV in the corner of your room while I met with the team rounding, to this one.  It will be the two of us (and the dogs). We have food but not really needing lots of sugar and snacks to keep us focused.  It's different...

I miss you, Aaron. I miss the me I was before you left. I thought I knew pain, knew heartache, but it was only a shadow of what was to come. There is no preparation for burying your child. None.

And that's probably good.

I love you.

Love,
Mama

“You meet grief without introductions”

― Jane Edberg 

So Sick

Dear Aaron,

This is miserable.

It's not Covid, we tested. It's not the flu, it came on too slow, but it's something nasty.

Maybe your old nemesis rhino?

But I don't remember feeling this lousy before. 

My body aches, my throat is raw from coughing, my nose is a faucet, and I've fevered. At 55, 102* is miserable! Fortunately, it hasn't gone up that high today. In fact, it's not truly a fever, 99.8*, but still...

Yuck. 😞

I guess the good news is that I think I'm better than yesterday, and hopefully even better tomorrow. A new quarter began this week at work and I'm starting it out way behind. Oh well...

And you're not here, which this time is a good thing. Daddy has been sick too but he doesn't seem to be quite as miserable as I am. You know I checked my sats. They haven't gone below 92% so I think I'm good that way. 

With no one but Daddy and me (and the dogs) it's been pretty laid back. Lots of soup, lots of liquids, lots of rest, just trying to get through it. Even going to the cemetery to pick up your things yesterday before mowing was really hard, like physically hard. Emotionally it always tugs at my heart.

And frankly, I'm feeling a bit embarrassed. I mean, you did this All. The. Time. And you didn't really complain. Plus you'd end up with IVs and breathing treatments and often no food. You did like the attention though. I don't think I would. I'm trying to hide away and just get through it. I'm actually hoping I can be back at work on Friday. If tomorrow is as much better than today was from yesterday, it shouldn't be a problem. 

But I'm still not hanging out with Sterling this weekend, or seeing the others. 

Nobody wants this. 

I miss you, Aaron. I came home from work early on Monday and have pretty much just been hanging around the house. Or in bed. And I feel like I'm at loose ends. I stay busy enough during the week that it's not as hard. But still, I'm glad you don't have to deal with this garbage any more. 

I love you so much.

Thanks for being an awesome kid, and blessing us with your life. 

It was truly a blessing to have you here.

My friend's comment keeps echoing through my head.

May his memory be for a blessing.

And it is, you are.

Love,
Mama

"The light that cannot be put out." 

SOFT Conference 2024 

40 Weeks

Dear Aaron,

It's been 40 weeks. 

40 weeks is considered the average gestation for a baby.

Christ spent 40 days in the wilderness

It rained for 40 days while Noah and his family were on the ark (although it was a lot longer before dry land appeared). 

Moses was on Sinai for 40 days and returned with the Commandments. And this was after he spent 40 years in the wilderness himself.

Forty seems to be significant in scripture.

Some have suggested that it symbolizes a testing period. 

Somehow, I don't think my test is over yet. I mean, you're still gone. You're going to stay gone. I haven't dreamed of you for what seems like ages. 

I drove past your school a few times this past week and I got to wondering about last year. Last fall was really hard on you. It seemed I was constantly texting your bus driver that you had a rough night and weren't going to school. Or that you were back in the hospital and weren't going to school.  

You had a really good run of eight weeks over the summer and I thought maybe you would be getting stronger, but then school started, the days got colder and darker, and so did your health. 

I struggle with this time of year anyway, and now the memories of last year intrude. 

I tried to figure out how many days you went to school last year, and I know I'm counting some school days when you were at home anyway because I didn't record those as carefully.  

There weren't very many. 

Three in August, 13 in September, nine in October, four in November, and I think six in December.

Thirty-five days in all. Out of 85 school days total. And like I said, I know I'm counting some that you weren't there for anyway. 

Aaron, I don't really like fall. The days get darker and colder, drearier. Winter I can hunker down more, but fall feels deceptive. It can look warm but still be cold. Or the other way around (sometimes).  And at least in the winter, by the time the snow and cold really get here, the days are beginning to lengthen. Right now it's just shorter and shorter and shorter. 

Kinda struggling here, Aaron. The days keep reminding me of all the time we spent in the hospital, days where I would drive an hour to get to work and then back again to sleep next to you. Lab reports, x-rays, CT scans, and rounds. Sixty-one days in the hospital between when school started and when you left us. Five different admissions. We, you and I, spent most of last fall up at Primary's. 

And you didn't come home the last time. 

I had to do that without you.

I'm still not sure how I managed to walk out and leave you. 

Truely, the hardest thing I have ever, ever had to do, and close behind it was closing your casket, knowing I would not see your face again in my lifetime. 

Oh, Aaron, I'll keep trying but sometimes it's really just, so, hard.

I miss you, miss you so much.

Love, 
Mama

"They say time heals all wounds, but that presumes the source of the grief is finite."

— Cassandra Clare

Catalyst for Change

Dear Aaron,

I talked about you today.

I mean, I guess that's nothing new. I talk about you every day.

But today I got to talk about you at a conference, to a room full of people, about system change. You are a catalyst for change.

So many years ago, Aunt Maurie and I used to play "pioneer." I was somewhat jealous of pioneers. I thought it would be amazing to cross the plains in a covered wagon, to run around, and sleep under the stars each night. We hung blankets and sheets on the sides of the bunkbed but left the end open so we could see to "drive." 

I guess I never thought about all the dust you eat, or the mud sucking at your feet, or the blisters, or the bone jarring ruts. 

Being a pioneer wasn't all fun and games.

Sometimes it's surgeries that others get because you live, but you don't because they didn't do those then. Sometimes losing an antibiotic (or two or three or more) because you've had so many infections they just don't work. Often it's sleeping in a chair that really should never have been given the name "bed." Sometimes it's sleepless nights followed by long days. 

Sometimes it's being part of the teaching process, helping others see the value of a parent's contribution and helping change the narrative. 

And sometimes it just hurt. (Still does.)

But along with the dust and the blisters and the ruts and the mosquitoes ('cause I'm sure there were plenty of them) was endless starry nights, and beautiful sunsets and forever friends.

And we get those, too. You were such a nut, and you brought so much love and light, not only to our lives but to those around us. And you're still teaching people. I have dear, dear friends whose path only crossed with mine because of you.  

Aaron, it is such a privilege to share your journey with others, to help them find their "why." 

What a blessing you were, and are! 

Thank you for being my teacher. I still miss you (always will).

Love,
Mama

"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight."

Kahlil Gibran 

Nine Months...

Dear Aaron,

I feel like I'm drifting, or something...

I'm looking at life as it passes by, but somehow not participating, or numb, or... I don't know.

I mean, I go to work and I think I'm doing good things there. I go to church, and to the temple with Daddy. But I find myself easily distracted, unfocused, and wanting to just leave. Not that there's anywhere else I really want to go, just not where I am.  It's been a long time since I attended the temple with any regularity because I just wasn't comfortable being where no one could reach me the last few years of your life.

Your life...

It was a good one. A really good one.

Fourteen years ago you hit 100 days. 100 days of love and light. And ultimately you blessed us with over 4000 more. 

Now, tomorrow marks nine months since you left.

Nine months...

The average gestation of pregnancy. But there is no joyful arrival to anticipate. At least not on this side of heaven. Instead, it's more time without you. More going through the motions, and I guess the emotions too, except those don't have the color they used to. The world seems so gray.

This week challenged me in other ways. I found myself reliving old memories (yeah, again, no surprise) and sobbing over the lack of future ones.

It's been 39 weeks yesterday, nine months tomorrow. So many more to go before I hold you again.

I miss you.

Love,
Mama

“I was just numb all over, like a dead man walking.”

– Fred Gipson Old Yeller

I Thought I Had Time

Dear Aaron,

I've been cleaning out my closet. You know, all those clothes that I wasn't ready to get rid of, in spite of the fact that they're not my size and/or style any more. Plus the stuff I've just tossed in there to deal with later.

Well, it was time. And mostly, it was just fine, except trying to find the time to do it.

But then I came across a bag...

It was the bag I put things in when we came home. Came home without you.

I found the lights that you were given for your hospital room. The lights that I meant to put up that night but ran out of time before going home to see Daddy on our anniversary. The lights I was too tired to put up when I got back. No problem, I'll just put them up in the morning, but morning never came for you. 

I found the socks I bought because we were always losing socks in the bedding.

I found the leg warmers I ordered because when you came all the way off the sedation we would need something to keep you from pulling your PICC line out. Holding those soft little perfectly new articles of clothing broke me all over again.

They are all still here.

Brand new.

Never worn...

Never used.

And you are not.

I thought I had time.

It truly did not cross my mind that you would leave, not my conscious mind anyway.

I thought I had time.

Today I put out fall flowers and leaves at your grave. I decorated your grave instead of thinking of a Halloween costume and hoping it would be warm enough for you to go out trick-or-treating. 

I thought I had time.

I was wrong.

I miss you so much.

Love,
Mama

"Time, the Heraclitean river — so painfully real to the heart, so unseizable for the brain."

~Percival Arland Ussher 

Numb

Dear Aaron,

I'm not sure how to describe this.

Numb?

Maybe?

Or frozen in time?

You know, while everyone and everything else is moving at breakneck speed?

I mean, I know I'm not frozen in time. I go to work, I see people, I even do my paperwork (necessary evil).

But it often feels like I'm just going through the motions, especially on the weekends. I have so many tasks and projects that need completing, and they just sit there. Weekdays I'm at work where you never were. But on weekends, especially Saturdays, the house echoes in silence. 

This morning Facebook reminded me that a year ago you were overcoming Covid. That's the one I thought would take you, not Flu A.  And yesterday was the 13th, yours and Michael's month birthdays. 

Last December 13th you were in the PICU but (relatively) stable. I remember driving down to work and calculating both yours and Michael's birthdays by month. Doing mental math helped me stay focused. When I got to work, I sent Michael a text wishing him Happy 209 Months. It was 162 months for you. 

That was also the last day I would see a real smile on your face. Ten days later you were gone.

Were you telling us goodby? 

Were you trying to tell us you loved us but you were anxious for the next step?

You know, kinda like a kid at graduation, or moving out to go to college? 

I mean, I guess that's what you did, and I know your siblings were all excited about those milestones, but they come home again!!

38 weeks now, and 37 since we closed your casket for the last time. 

On Wednesday I get to share your story with the surgical team at Primary's, and next Thursday I get to do it again at a medical conference on Family Centered Care. I don't have any idea yet what I'm going to say, but I do love sharing you. It keeps you alive in the hearts of others, and it reminds them of the "why" of their jobs. You were (ARE) so loved, and by so many in the medical world as well. For a kid who only once left his home state, and rarely left the Wasatch Front, you sure made a big impact on the world, especially for kiddos like you and families like ours.

I'll find my way, Aaron. Really I will. 

But I think I will always have a huge Aaron-sized hole in my heart

Love,
Mama

"Grief is a dull ache,

Ready to spring,

tears waiting.

Something always gone."

– Reverend Lori Turner-Otte