Zinnias

Dear Aaron,

An old blogpost from August 2023 popped up today, and I followed it down a rabbit hole, of sorts. 

You were heading home from the hospital, Yay!!

It was a relatively short stay, only a few days and on the floor the whole time. And you'd been home for almost nine weeks, which was huge for that year. 

And then I kept reading, following it forward.  Home didn't last long, only a few days, and then you were back and it was kinda ugly. I started crying for that me that was in the ER. I remember it. They paged "urgent response, code red patient" as they quickly walked us back. The room was full, but they moved like a well-oiled machine. Hospital vent was wheeled in, they put in two large IVs and started fluids, and you flinched but otherwise didn't respond. X-rays were done and read immediately. Code status was verified, and there was real concern. But even as I went through the questions, I didn't realize how bad it was; how bad it would be in a few more months. 

At the time, it all felt routine, and somewhat wearying since we hadn't even been home a week. Today I cried for the loss of the innocence I had in those moments. And for the mom I am who now understands too much. 

Aaron, I continued reading your story over the next four months, and sobbed. I didn't know. Unknowing, unconscious, unaware and very much unacquainted with the grief that was coming.  Somehow, I was being nudged,prompted, whispered to, and maybe deep in my soul I knew something. I recognized you were getting more tired, and it was getting harder for you. But your smiles were still so genuine. 

I miss you so much. I ache for the me I was, knowing now what she didn't know then, and knowing what was coming for her. 

You gave us so much love, so much hope, so much life.

I remember acknowledging the miracles we'd already received, and begging for more. 

And then receiving one in your peaceful passing. It really was peaceful, even though my heart shattered. 

And the outpouring of love and support from around the world and close at home.

And being carried through the last 20 months, 87 weeks, way too many days, without you. 

Tonight Linnaea and Elend helped me cut zinnias from your garden to bring inside. Avanlee wrote me a beautiful poem about zinnias and gave me the seedlings for Mother's Day. I'm trying to be strong. I'm trying to stand tall. Linnaea knows how to tell when a zinnia can be cut. You do the "wiggle" test, where you shake the stem, and if it stays firm, you cut it. But if the stem and flower wiggle back and forth, it needs to be left to grow more. 

I'm trying to stand firm. I'm trying to trust the process. Sometimes I think I'm still too wiggly, but at least I'm growing.

And growing can hurt. 

I love you so much, Aaron. 

I miss you.

Love,
Mama

her bloom gives hope,

and those who tread

find respite in

her garden bed

Avanlee Peterson

Through a Glass Darkly

Dear Aaron,

I still go see you each night, although to be honest, I'm drawn more to your garden here than your grave. The other night as I went, I timed it just right for the sprinklers to be going over your spot, and I really couldn't see it.

Oh, I knew it was there. And there was a darker gray outline behind the gray curtains of the water spray. But I only knew it was there because I knew it was there. And in my mind, I could see it, hazy behind the droplets, still with your name, your smile, with the reminder that you are still Compatible With Joy. And those dates that bookended your life here that we crammed so much into. 

And I wondered...

I mean, I know you're still you. You couldn't possibly be anyone else.

A memory popped up from 15 years ago where your Jonny mused to me that perhaps you were the superhuman being and you needed that extra 18th chromosome to be able to tolerate living here among us typical mortals. Maybe...  

Your FIRST first day of school

School started again. You'd be in 10th grade if you were here. Your Linnaea started Kindergarten yesterday and she is loving it. Do you peek in on her? You loved school so much yourself. And you had your own ideas of what you wanted to do there.  

I went to the SOFT picnic on Saturday, only the second time I've gone without you. I remember last year it was windy and hazy, and I didn't worry about your asthma and breathing 'cause, well, you weren't here. And this year it would sprinkle and stop, and then start again. And I didn't worry about electronic medical equipment getting wet. But oh, I wish I still had to. I miss you so much.

My cousin sent me an article from the New York Times called, "Noah is Still Here." I read it and it brought back so many memories. Trached, vented, g-tube dependent. Funny, friendly, outgoing. Playing with siblings and staying up all night. His bed even looks just like yours. It was beautiful, and poignant, and in a way, cathartic. 

Dr. Carey brought me a copy of the AAP News, the monthly magazine put out by the American Academy of Pediatrics. You, my son, are in there.  Back in the 70's, T18 and T13 were lumped together and declared "incompatible with life." That has now officially changed. Routine care, examinations, treatments etc should now be offered to all parents whose babies come with this extra bit. Care should not be denied based on that extra chromosome, and treatment should not vary between institutions. If a hospital cannot provide the level of care needed, the child should be transfered to a higher level of care. And so on. 

And you are part of this. Your baby picture is on the postcards that are being distributed to prenatal centers across the country. 

You touched and continue to touch so many lives, improving outcomes, giving hope, being "Compatible with Joy."

And yet, I still feel the darkness, the cloud, the lack of clarity and I miss your physical presence. 

I guess that's what happens when you love deeply. Those paths you carved in my brain are still there, waiting for something, waiting for you. 

And you're not here.

I know the day will come when I see clearly again, probably even in this life (although I still won't see you). Right now, I'm trying to trust the process. 

I guess that's all I really can do.

I love you, Aaron.

I miss you.

Love,
Mama

"For now we see through a glass, darkly; but then face to face:
now I know in part; but then shall I know even as also I am known."

1 Corinthians 13:12 

Days Are Getting Shorter

Dear Aaron,

We sat around the table tonight telling stories about you. We laughed and smiled, and for a moment it was almost like you were still here. 

Your Andrew is engaged. He found an amazing woman who is so much his match. I think you'd love her, too. They're getting married in November, and it's the first wedding without you. I mean, I guess you missed Matthew and Kensey's wedding because you were still in the hospital, but you were discharged the day of their reception so you made it to that. 

Time keeps moving on...

I was driving last night as the sun was going down, coming back north into the valley from the south end. The light hit our mountains just right so they seemed to glow. As I looked around I could see the mountains on every side, strong, immovable, comforting. Almost like I was being protected, and I thought of you. I remembered all the times I drove north to Salt Lake in the evening after school or work. I don't think I noticed them much then. I was always so focused on getting back to you, trying to figure out how to help you, hoping we could go home soon. 

And ultimately, I guess we did both go home, just not to the same place. Eight-five weeks ago you went home to Heaven, and I drove home with Daddy.

The longest drive of my life...

It's been more than 18 months and most of the time, most of the time I'm okay. I remember you, tell stories, see pictures and it's okay. The pain is there, but it's quieter, maybe deeper, more a part of my soul and less obvious. But sometimes it breaks through and I'm lost all over again. 

I was watching some short videos that Holli sent, and then looked back at others she had shared. The earlier ones, from the aquarium, playing with your blanket, doing math at school and laughing were so fun. But then there were some she sent me from school just a few months before you left. You were struggling, neurostorming was hard, and you looked so tired. Clear to the end, you maintained your spark and your zest for life, but you were done. Your spirit was so strong, but your body wore out. 

I will never forget the last big wonderful smile, ten days before you left me. You were crashing and the room was full. You looked around and gave the biggest grin.

Were you saying goodby? Were you saying thank you? Did you know you were almost done with your race and could soon stop fighting? 

The days are getting shorter, and the nights cooler. Not many weeks ago it would have still been light out but now it's almost completely dark. I'm sitting here with socks and a jacket, and fall and then winter will be here. We're more than halfway through the second year without you. 

And tonight, it is just hard.

Miss you so much.

Love you even more.

Love,
Mama

“Memories saturate my heart and the story of you spills from my eyes."

— Grace Andren