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

Ripples...

Dear Aaron,

Do you have any idea how much you changed things? Policies? Procedures? Lives??

How much you impacted others?

I mean, I don't, not completely, but still...

I was talking about you tonight at a family picnic for the Family Advisory Council and all the things you taught me, and taught others. 

Your life is like the rock thrown into a pond whose ripples go on and on until they touch the shore, and then come back again. 

It's not just your direct influence though. It's those I touch through your life, and those who touch others' lives who learned from you, and on and on and on...

The doctors who saw you live and love and thrive, who then are willing to take a chance on another child when they had been taught that trisomy kiddos wouldn't, couldn't live. The staff who watched as you played. The teachers who saw you academically outgrow your school. 

What a blessing to have had you here in our home, intertwined so intrinsically in our lives. Others watched from more of a distance, but you were here. 

Yeah, sometimes it was hard, I think for you as well as for me. 

But oh, how worth it.

And I would do it again in a heartbeat, even knowing now the pain of your loss. 

Because even with the unbearable ache of your leaving, I cannot imagine not ever knowing you.

I love you, Aaron,

Love,
Mama

 "Given a choice between grief and nothing, I'd choose grief."

- William Faulkner

One Bite at a Time

Dear Aaron,

I sit here in bed as the world slowly turns from night into day again. 

Another week gone, 37 now.

The days are getting shorter; the shadows in the cemetery are longer when I go by.

Does it ever make sense?

I mean, it somehow does get a little easier. 

I don't look for you each time I pass your room anymore, just sometimes. 

I don't wake up worried that I missed an alarm every night, just some of them. 

I distract myself with books, family, shows but you're still there with me, a part of me, always in my mind. 

Last Monday, Daddy and I drove to eastern Utah to see a family who lost their own son. They lived in the neighborhood several years ago and I will always remember his cheeky grin, his infectious toddler laugh which, from looking at pictures, never changed. I took her a stone heart like the one I carry, and she asked how I knew. She had told him that every time she saw a heart, she would think of him. I didn't know, but especially in the early days and weeks, that's what kept me grounded, from flying apart at every moment. I pray it helps bring her comfort too. 

Yesterday, Facebook gave me the gift of a long-ago picture. I forgot about this one, but my heart did not.

I don't remember which of your siblings I bought this elephant for, but it was pretty much ignored. By the time they were big enough to really do much with it, they were moving and grooving, and much too busy exploring other things. But you loved it! In fact, you loved it so much it became real, you know, in a Velveteen Rabbit sort of way. 

They say the way to eat an elephant is one bite at a time. I think you took that to heart. You endured so many, many things over your lifetime, and yet you just kept going as long as you could. I truly believe that you stayed around a lot longer than your frail body wanted to by sheer force of your spirit (and my refusal to give you up). 

And I guess now it's my turn. I will get through this and grow, just like you did, just like eating an elephant...

One bite at a time.

But I have to say, chewing on that leather is just hard.

Love you so much,
Mama

We belong to each other, and we can do hard things.

~Glennon Doyle 

Moments, Snapshots, Memories

So many thoughts going through my head...

Facebook reminds me of past memories: good ones, hard ones, funny ones, tender ones. And it's almost like ripping that scab off again. You know when you were a kid and it would get a little itchy, and you knew it hurt when you pull on it, but you do anyway? The pain intensifies, but also reminds you that it's there?

Kinda like that...  

A year ago we learned (although we had suspected given his increasing infections) that the antibiotic we relied on to keep his trach infections at bay no longer worked. For eight years it kept the bacteria at a colony level; there but not causing problems. With multiple infections over the course of a year, well, it became obvious. In losing that, we lost a major weapon. He was already struggling and there were only three IV antibiotics that appeared to work. It was hard as we scrambled to find another one we could do at home, and also keep it from becoming ineffective. My soul was anxious and heavy at the time; now it just aches.

Eight years ago Aaron raised his Make-A-Wish star. At an evening dedicated to him, family and friends gathered. As he sat in his wheelchair in the front, Michael raised his star for him. It will always be there, hanging, although I don't know that I'll ever go back there again. 

Requesting a wish for him was bittersweet. It gave him a wonderful opportunity to have movies in an area he could access, and it also meant formally announcing that we expected him to die. 

14 years ago Aaron and Michael played together. Michael would look at his own baby pictures and ask me how I hid his tubes and wires, 'cause that's what babies have. And I put a feeding tube and oxygen cannula on Michael's baby doll. They looked like twins. Aaron had outgrown his central apnea spells, and obstructive apnea hadn't set in yet.

So many memories...

So much love...

And now, well, the love and the memories remain but are also tempered by the knowledge of what I have lost. 

I know I'll get him back again. I know he watches over us. I am so grateful for the resurrection and rejoice that I will hold him in his perfect body that will run to me and call me by name for the first time.

But right now, memories feel like a poor substitute for having him still here.

Miss you so much, Aaron. Love you even more.

"We do not remember days, we remember moments."

~Cesare Pavese