"Aaron, It's Time For Your Eye Appointment"

Dear Aaron,

So today it happened.

I got a text addressed to you, reminding me that you were overdue for your eye appointment, and "eyesight is very important, so please call and schedule."

Yeah...

I don't think you really need that anymore.

I tried so hard to avoid those. I made sure that everyone at Primary's and their affiliates were notified. I called the eye glasses place. I forgot that we had been referred to a surgical eye specialist. They're not with IHC or Primary's.

They didn't know.

Now they do. 

Twenty-two months, 95 weeks, Friday into Saturday again.

Wednesday I planted 175 flowers and bulbs, many of them in your garden, mostly pansies and tulips. I wondered at the time if I was jumping the gun a little. I mean, it wasn't too early to plant those, but I felt a little bad pulling out and cutting the zinnias, marigolds, sweetpeas, petunias and snapdragons. I cut down all the balloon flowers and lilies out front. But I also reasoned that if I waited for a hard frost, I also had no desire to be out there. 

Thursday morning I got up and looked outside. Was that a hard frost after all? Nope, it was snow! Not a lot. The grass is short and was still poking up through it. But yes, snow. And I was glad I'd done all that work before. 

Your blanket and hospital gown no longer smell like you. I no longer wake thinking I forgot your meds. Someone asked me why I always wear a butterfly and I asked if they wanted the real reason, or the reason I tell my clients (since there are a bunch of butterflies in each office). He quickly said he didn't mean to pry and I told him it wasn't a problem. 

I've been wearing butterflies for over 15 years now, for you, for your friends. For all the children gone too soon. I told him my watch band is from the beads I used to make your trach chains, and he responded that it was almost like a memorial tattoo. 

I hadn't thought of that, but he's right. And so is my watch face, and my phone screen. Quiet pieces of you, and of Gramma, that I always carry with me. Yellow roses and butterflies. 

Gramma's roses still bloom. Pansies are planted around them. And your solar lights still light up the garden. I don't sit out there anymore 'cause I don't like the cold. But I still see them, see the rainbows scattered by various prisms around the house, some given to me by friends, and two by Gramma. 

You know, it actually didn't hurt as much as I feared it would when I saw that text this morning, more of a quiet ache than an overwhelming gut punch. 

Maybe I'm learning to carry it, at least for a moment. 

I still miss you.

Love, 
Mama

"The ocean has its ebbings — so has grief."

~Thomas Campbell 

Joy

Dear Aaron,

The weather continues to chill. Rain falls, the air is nippy, and I saw frost on the grass last week. The sun is just coming up as I go to work, and it's close to setting when I get home. 

It won't be long before it's full dark when I come by your grave.

Tonight I cleaned out your garden for winter. 

And tomorrow is the Wave of Light. 

October 15, International Pregnancy and Infant Loss Day. I mean, you were a teenager when you left, but still, you were and are my baby. I even called you my "forever baby" because of the care you needed. 

It's also Deborah's birthday. She's got her own two little ones now. Linnaea still remembers you and sometimes talks about you. Barrett came not quite three weeks after you grew wings. But he plays with your toys and I hope you two talked during that overlap. 

I've been reading old blog posts and some make me laugh, others make me cry as I remember the fear, the rush to stabilize you. But always, you came back. Until you didn't. 

With General Conference over, Joyful Christmas Sounds rehearsals have started. I almost didn't go. I find myself so tired again, and lacking motivation. That's probably due in part to all the stress and mess that we're still figuring out with the house. But Daddy encouraged me, and I needed it. 

We always start with the same medley, and as the notes rang out (or sometimes croaked out, I'm rusty), I felt it. I felt the joy of the season. I felt the joy of you! Because of Him, of His birth and life and resurrection, I get you back. I will hold you again. This separation will not last forever.

On my way to work this morning.

And you were and are all about joy. 

In 2016, we were trying to get a super-expensive med approved along with the equipment. In the meantime, you managed to catch a cold while in the hospital. It was the only time you got sick from something else while inpatient. (They worked so hard to keep that from happening,) But nine years ago today, I stepped out of your room to grab a bite to eat, and the nurse called. You had dropped your sats, a lot! You were on 15 liters, up from six when I left. I raced back getting there about the time the rapid response team did. I held your body as you shook, as they tried to place an IV and the RT was bagging you. And I pled with heaven to help you, help you breathe, breathe deeply. You came back, grinned at everyone with your trademark smile, and went to sleep. 

Coming home, it's hard to see, but there's a 
rainbow in the center reaching into the clouds.

So many times over your lifetime this sort of thing happened. You would be struggling, others would help, and you would smile. And then your last real smile....  Were you trying to remind me of all the joy of your life? Did you know that memory would be burned into me? 

Oh, I miss you, but the joy you gave, and continue to give, is worth every bit of the pain. 

As I drove to work this morning, the rising sun lit up the mountains in the west. And then on the way home, there was a rainbow, a promise of God's care. 

I will light candles tomorrow from 7-8 for you, and for all the others that parents had to give up. Acrossthe world, in every time zone, candles will be lit and for 24 hours, there will be a wave of light, light our children have brought to the earth, and then left behind to help us continue on.

Love you so much, kiddo. Thank you for being you.

Love,
Mama

Our birth is but a sleep and a forgetting;

The Soul that rises with us, our life’s Star,

          Hath had elsewhere its setting

               And cometh from afar;

          Not in entire forgetfulness,

          And not in utter nakedness,

But trailing clouds of glory do we come 

               From God, who is our home:

William Wordsworth

Living for Eden...

Dear Aaron,

Numb.

Seeking.

Searching.

Wondering if I'm the problem. If I'm looking in the wrong place. 

Even in the temple...

Do you remember the temple? We went a few different times to the grounds both in Salt Lake (usually with Michael during spring break) and here closer to home.

I'm trying but sometimes if feels like even with the car on and my foot on the gas pedal, I'm stuck.

But on Wednesday, your Michael said something that seemed so profound. "Instead going to The House of the Lord, make an appointment with the Lord in His House." (quoting Elder Bednar) That struck me, but it also felt awkward, stilted, mostly because I felt out of practice. But then, many, many things feel that way right now. Sometimes life seems to flow but often time feels jerky, racing ahead, stopping suddenly, and occasionally reversing.

So I tried. I saw a couple friends from the neighborhood, and that was nice, but still... I sat there and silently pleaded to know, to feel, to understand that He knows, He knows what I'm going through, dealing with, and that I'm not doing it wrong. And nothing. Even where I thought I would and often do feel it.

I sat in the Celestial room, still struggling. Dad came in and after a few minutes we stood to leave. As we passed a large group, a woman caught my eye. I haven't seen Tracy except maybe in passing in over 30 years. We lived near each other and were friends the first time Daddy and I lived in San Diego, back when David was born. She reached for me and held me, and I felt it. I felt His love surrounding me. My walls tumbled, my heart opened. 

I breathed.

Nine years ago I wrote about similar thoughts and pain. You were doing (relatively) well which gave my mind time to try to process; a painful procedure when you parent a medically fragile child. It was Conference weekend and I really didn't get much out of Saturday. But on Sunday, President Nelson spoke of Joy and finding it in the midst of any circumstances. That one hit and heaven's floodgates opened. 

Seeing Tracy opened my heart the same way.

There are still a lot of things going on that are, and will continue to be, super hard. The mom who was next to you the night you left me has now lost her baby girl. Two other little ones, a toddler and an infant, are critical. Child loss, losing you, is a pain beyond anything I ever could have imagined. 

But as I drove to work yesterday, "Living for Eden" was playing. The rising sun, the golden clouds, the birds flying in formation, they all reminded me of His love, and of your love. Life is such a beautiful gift.

I'm grateful for yours; I'm grateful for mine. I'm grateful for our amazing family and the chance to listen to the counsel from our leaders again this weekend. And I know I'll see you eventually. 

Love you so much, Aaron.

Save me a seat, 'k? 

Love,
Mama

"We all long for Eden, and we are constantly glimpsing it: our whole nature at its best and least corrupted, its gentlest and most human, is still soaked with the sense of 'exile'."

- J.R.R. Tolkien 

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