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