Don't Tell Me...

Dear Aaron,

I'm angry. 

I keep hearing the things people said. 

Things people still sometimes say.

And while I know they mean well, they. Just. Don't. Think!

"Are you excited to travel now that you don't have to care for him?" (Two weeks after the funeral.) NO!

"It's so good to see you finally getting back to yourself. I can see you feel better." (A month after you died). Um, no, I just wear the mask better, the mask I will wear the rest of my life. Grief makes people so uncomfortable.

"I could never be as strong as you. I guess God knew I wasn't strong enough to lose a child." Oh, it's not like I had a choice. And it damn near broke me. In fact, it actually did. I underwent cardiac testing six months after you left due to symptoms I'd had since you died. But I couldn't summon the energy to go in before then. Broken heart syndrome, takotsubo cardiomyopathy, is a real thing.

Don't tell me ,"he's in a better place."

Don't tell me, "You got to keep him much longer than you thought you would."  I know that, but I want you here. Now. Still. I worked so hard, loved so much, gave up almost everything to keep you alive. And you loved your life. Your life here. And you were loved so much! 

Don't tell me that "I know how you feel. We had to put our precious dog down a few months ago and I loved him just like a child." WHAT?? (Yes, someone actually said that.) I know people love their dogs, but honestly, every single person should realize they will outlive their dog. And it's a dog! Not flesh of their flesh, bone of their bone. They bought it; they didn't give birth to it. 

Halloween 2023
Aaron-dalorian,
showing me "The Way" 

Don't tell me "I only have so many ________ (fill in the blank with whatever event) with my children" 'cause you know, not really. You may only have so many with them in a certain age range, but really?? Are you planning to disown or bury them? Because I only got 14 Halloweens, 13 Christmases, 13 birthdays with you. And I get No. More. NONE! And I guess if they're worried about missing them in person, well, I missed three with your siblings, some of them very young, as we fought to keep you alive. 

So if someone wants to say those things, go ahead. Just not to a parent who has buried a child.

Your last Halloween, we draped your costume over you for a quick pic because you were so sick, fevering so high, so precarious, that we didn't dare put it actually on you. And Halloween is on the doorstep again, only five weeks away. 

Oh, Aaron, I miss you! The weather cools. Nights are officially longer than the days now. The leaves change and fall. And I relive over and over those last few months of your life. 

So many days and nights in the hospital. So many fevers, blood transfusions, close calls (that I didn't realize were quite as critical as they really were). 

It's been 92 weeks tonight. I went to sleep thinking it was just another night. We were on the right path. It was taking longer than I wanted but you would be okay.

And in the grand scheme of things, you did go home. You are okay, more than okay, but I'm still not. 

They say that anger is a secondary emotion; something else always comes first. 

Did you know that a broken heart actually hurts physically? 

Tonight I just want you back.

And I can't have you. 

Tonight I'm drowning.

I miss you.

Love, 
Mama

“I sat with my anger long enough until she told me her real name was grief.”

C.S. Lewis 

Learning to Swim

Dear Aaron,

I don't swim well. I never have.

And yet, I'm being forced to learn. It's that or drown. And I guess sometimes I still feel like I'm drowning. 

But sometimes I swim. 

Always I'm wet. I don't think that will ever change.

Our mountains change colors, the nights get chilly. I don't see very many hummingbirds although I'll leave the feeders up for a little longer in case there are some stragglers needing help. 

And I realized something the other day: I don't look at the mountains as much as I did that first year. I still notice them, but it's more of a conscious effort to see. 

The first year, I think I was looking around like you do when you're lost, confused, in an unfamiliar place with no idea how to get out. You look around hoping to find something familiar, someone who can help you find your way. 

And it was so hard, so confusing! I was so lost!! The idea of a world without you in it was unfathomable. And yet, I was required to fathom it. It. Made. No. Sense. (often it still doesn't)

And so I clung to the mountains, to the stars and the moon, the trees and the grass. I studied them because I knew them, and at least they didn't change (much anyway). 

They grounded me, and still do.

The past week has been interesting. Not far from where you are is another tiny grave. (Okay, I don't know how tiny the grave actually is, but there are only four days between the two dates.) In September before you left me, a little soul came briefly and left again. His birthday was Sunday; his angel date was today. On Saturday, I took two butterflies over to him and saw a few matchbox cars lined up on his stone. Yesterday when I went to pick up your butterflies (mowing day is Wednesday), there was another butterfly for you along with a matchbox car. 

Two sets of parents grieving, not knowing each other, and yet I hope I brought a smile to their faces like they did to mine. Do you know him? This little boy? Do you hang out together and keep an eye on us? Do you miss me as much as I miss you?

And today I took some things up to little Gracie Field. She is so critical right now. Her big brother was struggling in the room next to yours when you left. Mom woke up in the early morning hours feeling like something was wrong and heard sobbing. She prayed for us, for you, for me, and now I pray for her. I still have no idea how I managed to walk out without you. How my heart kept going when yours had stopped. How I kept breathing... 

Oh Aaron, I may be swimming, and even doing okay most of the time. 

But I will never be fully dry again. 

Love,
Mama

Just keep swimming...

Dory

September

Dear Aaron,

We're a week into September; fall is almost here.

The sun has already set and it's only 7:30. 

Nights are cooler.

Cold weather isn't here yet, but I can feel it coming.

This week was hard! 

Memories keep popping up, juxtaposed against each other. 

First day of preschool in 2013, and then a few days later going to the SOFT picnic and ending up in the PICU. 

Your Make a Wish Star Raising in 2016. 

Realizing in September of 2018 that it had been a year since our last 911 call, and that continued into November! 

Matthew coming home from his mission in 2018, laughing and joking with everyone, until he knelt next to you. And then the tears flowed. He left, each of your siblings left, not knowing if you would be here when they got back. And yet, they went because they knew how important it is to share the good news with others. You almost weren't here when Andrew came home. Twice I called the mission office to tell them the doctors didn't think you would pull through, but you did. 

And now Michael has been gone a year, but you've been gone almost two. He went by to see you before he left, and we won't see you when he comes home, but I suspect you'll be there.

And then, somehow, with all the memories of you and the highs and lows of Septembers, memories of Gramma were mixed in there, too. 

I keep remembering the tracings on your heart monitor as your heart slowed and then stopped, and the call almost a year later from Auntie T telling me what was going on in Arizona. How the only option was to intubate Gramma and put her on a vent, but the doctor didn't think she would be able to come off. How I understood academically that a ventilator lets the body rest so it can recover, but my gut said that wouldn't happen. And then he started talking about how that would mean a trach and a long-term nursing facility, and Auntie T said she knew I'd done that with you but .... And I interrupted her. "No, not for Mama, not for her." And that's where Tricia was going too. 

You loved your life, and the vent was a necessary component. You loved playing with the tubes too! But Gramma had for years made her wishes known and she wouldn't have wanted that. So we said goodby. I told her to find you and hold you until I could get there. 

And oh, it hurts, it hurts so much.

Your cousin Lauren got married yesterday and we siblings were all together for the first time since Gramma's funeral. Grampa wasn't able to come because he's struggling, and it was weird to be together, and not have them there.  

It's still weird to not have you here. 

Aunt Maurie send one of the sprays of roses home with me last night and Aunt Liz and I put it on your grave. It's the first time in a long time that I've had flowers to put there, and they're beautiful.

I don't do well with the cold and the dark and winter. It feels lonely and sad. Both you and Gramma struggled so much more those last few months, and then just when the world was at its darkest, you left. 

I sit on the patio and the hummingbirds fly back and forth. They drink voraciously at the feeders and the flowers. They work to gain the weight they need for their migration south, which will begin so soon. The world is shutting down. Soon the frost will come and take the flowers in your garden. The hummingbirds will be gone, and I will stop sitting outside until the weather warms again. 

Hunkering down, trying to keep going.

Missing you . . . always.

89 weeks . . . 

Love,
Mama

"I used to love September, but now it just rhymes with remember."

-Dominic Riccitello 

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 

I Miss You Still, Always

Dear Aaron,

Evenings cool off. By the time I get home from work, the backyard is shaded. Hummingbirds still flit (and chitter and scold each other) but it won't be too many more weeks before they fly south again. 

Days are still hot, but nights are chill. I put a jacket on when I sit outside in the morning.

School starts in two weeks. 

We've almost made it through the second summer without you, and it still seems surreal sometimes.

Other times, I feel like I've woken up, the numbness wears off, the ache duller in some ways but sharper in others. Everyone watches for the first year: the first birthday, the first anniversary of your death, the first Christmas, Thanksgiving, Mother's Day and Father's Day. But the second is different.

By the second time days and seasons roll around, others move on. But instead of focusing on getting through the "firsts," the reality of the "this is the way it will be for always" starts to sink in. 

I'm not exactly sure why the pain has been more intense lately. Maybe because I'm physically and emotionally exhausted. My yard is torn up, my house is torn up. Making them look good again is going to take a lot of time and work. We'll get there, but right now, it's hard. 

You have a new niece coming just before Christmas. Are you two hanging out, playing? Are you telling her about how amazing her parents are? Are you reassuring her that she will be loved so very much by so very many people? I'm guessing her Grandma Amy is right there, too. And your Gramma, and lots of others who love her and love you and love us. 

Oh, Aaron, do you miss me as much as I miss you? In some ways, I hope not. I hope you are happy and at peace. I hope you don't hurt like I do. 

Oh Baby...

Last night, a perfect crescent moon hung over the trees, above the hill, and I imagined you resting on it, looking down. 

I miss you so much.

Love,
Mama

“The weird, weird thing about devastating loss is that life actually goes on. When you're faced with a tragedy, a loss so huge that you have no idea how you can live through it, somehow, the world keeps turning, the seconds keep ticking.”

- James Patterson