July

Dear Aaron,

Another month without you, the second July you haven't been part of. 

You came home from the NICU 15 years ago on Sunday, came home to make memories before you died...

Well...

You did that! 

Over and over and over, until you didn't. I cherish those memories, and miss the ones we didn't get to make. 

You came home to a tiny bassinet set up at the foot of our bed. You came home to eight siblings that were beyond overjoyed to have you around all the time! Before that, they could only see you for a short time on weekends, and I think Michael (then not quite 4) expressed what we all felt when he had a meltdown in the unit. He wanted to stay with you, and if he couldn't, you needed to come home!!

You came home and I learned that it took me six seconds to race from my office to my room, and ten from the dining room. The kids learned to jump out of the way if your alarm was going off because I wouldn't even realize they were there. The apnea monitor only alarmed if you already had not breathed for 20 seconds, and I would count the beeps as I ran. That happened over and over, some days more than others, for the first two months and two days of your life (minus the days in the hospital). It's telling that I remember to the day the last time you had a true apnea. 

And at night, I would look down to the foot of the bed and see two blinking green lights, one for your heart and one for your breath. As long as they were going, I knew you were okay. 

As long as I could see the tracings on your monitor in the hospital, I knew you were alive.

And then the day came when the monitor was dark, the room was quiet except for my cries, and you were so, so still...

Oh Aaron, it's July, the month with all our birthdays, the month you were due. I don't want to have my birthdays without you, and you're not here. And Gramma isn't here. Yesterday I missed her so much I pulled up an old voicemail and listened to her voice. And it was regarding your services, your burial. How do I do this?

Some days just really hurt...

The pain is different now, maybe less sharp, less cutting. And yet, still there, maybe deeper, more steady? I don't know. The tsunami doesn't come as often but I'm always wet. It's always there, part of me, in my bones, my flesh. 

It has fundamentally changed me.

And I miss you.

Love,
Mama 

“The grief within me has its own heartbeat. It has its own life, its own song. Part of me wants to resist the rhythms of my grief, yet as I surrender to the song, I learn to listen deep within myself”

~ Alan Wolfelt 

My Warrior

Dear Aaron,

This popped up in my memories yesterday.

In 2016 you were invited to the Warriors over the Wasatch preliminary show. The Thunderbirds were flying and there was even the opportunity to meet and visit with the pilots and crew! So exciting!

Except you had other plans, or your gut did.  You'd been having trouble for several days and finally landed yourself at your own personal favorite playground: the PICU. And somehow, they weren't inclined to grant you a pass for the field trip. 

So you stayed behind and played, and Daddy, Mary, Andrew and Michael picked me up and we went to see them. Michael stood in for you and they sent a pin and a plane (actually several planes) back for you. I pinned it on you but you were much more interested in the jet itself. 

I also got some fun video of you talking and playing. I wish I had taken more video. They make you come alive again for me, for those brief moments when I watch them. I smile, sigh, sometimes laugh and often shed a tear. 

You were and are my warrior, my inspiration, my strength. You taught me that darkness can be overcome, to look deeper, try harder, work, and then rest. You taught me that sometimes tincture of time is the best prescription. And sometimes the answer is simple and as basic as the right kind of food. You taught me to keep moving forward even when it's scary, maybe especially when it's scary. 

79 weeks tomorrow since I told you good night. 79 weeks on Saturday since you woke up in heaven and I stayed behind. It still aches. I'm still trying to learn...

Miss you.

Love you.

Love, 
Mama

“The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering.”

― Ben Okri 

Are You Nudging Me?

Dear Aaron,

It's been a heavy week, and I'm weary. 

Lots of struggles; little sleep. 

And today I completely broke down at the cemetery and started yelling for the first time in a long time.

"How are you gone???"

And then I sat sobbing. 

On Tuesday I picked up your balloons. Stuart is a little worse for the wear and is lying down, but Bob was still going strong. A draft last night caused him to  jump out at me and I startled and laughed. 

This morning I couldn't find him, and then as I turned the corner, there he was. In your room, floating about two feet off the ground. Tonight after work, he was just resting his feet gently on the floor. 

Hanging out where you used to. Is this your way of nudging me? 

Oh, I miss you.

I'm tired.

It hurts. 

Tomorrow is one year since Lucy danced into heaven. Today is 78 weeks since I last saw you awake. And Monday is 18 months since you left us.

It's been almost two weeks since Jillie joined you, too. Having just turned 18, I thought she was one that would live almost forever. But on June 8th, she fell asleep and woke up with you guys. I don't know how to fathom this, and I know I only feel a tiny portion of the pain her family does.

Grief is ugly and painful and so, so hard!

And still, I will pay that price for the gift of having known you, loved you. And count myself blessed.

Oh, Aaron, give me strength...

Love,
Mama

"Grief is not a disorder, a disease or a sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love. The only cure for grief is to grieve."

Earl Grollman 

15 Years and One Day

Dear Aaron,

So many thoughts...

You turned 15 yesterday, at least in earth years. I have no idea how birthdays are counted in heaven. But if you came to earth to gain a body, a principle part of progression, I think it's still appropriate to celebrate that in heaven as well. I hope you did.

We had pizza and cake and ice cream. Daddy thought that was an appropriate celebration meal for a 15 year old boy. Linnaea blew out your candles, but there wasn't the "one to grow on" that we always put on, a tiny bittersweet tug at my heart. 

We put balloons at your spot on Thursday night and I went by again Friday morning. I'm glad I did. I  figured that especially the latex ones wouldn't hold helium well, so I tied them to a dowel along with the Happy Birthday balloon. Well, I was right. When I went by again last night, the red, yellow and blue ones were sagging and pretty sad. Your minions were bopping along just happy as could be. But your Happy Birthday balloon seems to have broken loose and gone for a ride.

Did it come find you? Did you get to play with it?  

On your first birthday, Daddy read a poem (because I couldn't do it through tears) about balloons and then we released hundreds. This year, I want to believe that one special balloon reached out to you? 

Where do balloons go Mommy, when you set them free? 

Do they float into the clouds or get stuck in a tree?

Do they fly high in the sky or get popped by a bee?

Do they soar with the birds and the bugs in he air?

Or stay close to the ground and get chased by a bear?

Does the wind blow them out over the big blue ocean?

Or do the climb up and over small hills and big mountains?

Do they go into space and circle the stars?

And fall back to earth after traveling so far?

Or does GOD collect them all in a big bouquet...

And give them to the children in Heaven each day?

Where do balloongs go Mommy, when you set them free?

I hope they go to Heaven .... As a gift from Me!

Ann Deane

Today I found a rainbow streak on the wall outside my room and smiled as I touched it. You touch so many lives, you are so loved. As time moves on, (77 weeks today) I know you fade from more and more people's thoughts. But you're never far from mine. And there were those who reached out yesterday; a few family members and some nearby friends, but overwhelmingly it was other medical mamas, and angel mamas. 

We know, we carry our angels in our hearts. You are always part of me. 

Love you, little man.

Love,
Mama

"The soul, light as a feather, fluid as water, innocent as a child, responds to every movement of grace like a floating balloon."

 - Jean-Pierre de Caussade

 

 

Dear Mama

Dear Mama,

Six months ago you slipped from this life (it was also a Wednesday). Two days from now is Aaron's 15th birthday. Are you planning his party? Will it be amazing? If you have anything to do with it, I bet it will be. I wish I had an invite. I mean, I wouldn't stay, but coming for a visit would be wonderful, except I don't know that I would actually want to leave. 

Morning walk with the
dogs and Esther.

I'm here with Daddy but I leave today to go back home. It's been good, quiet, introspective and also wonderful to reminisce with him.  He's doing okay but misses you more than any of the rest of us do, and that's a lot. 

We went to see you on Sunday and again today. I've noticed rocks that people have left at Aaron's spot, and I left one by your light-up dragonfly. I have no idea how long it will stay before someone pushes it back into the other rocks, but I know it was there, and I suspect you do, too.

It's weird being here without you. Just not the same. I wander around the house looking at old memories. I found two cross stitch pieces I made you, and while I know you treasured them, I wonder if you knew how much making them helped me. They were a way to change my focus from the stress of college classes and recenter my own self. I saw the little china girl who used to have a small dog attached to a chain and lit up. The dog and chain are now gone, and I don't know if she still lights up, but I seem to remember it came from Nana's. 

So many reminders...

Miss you so much. Give Aaron a hug for me and tell him "happy birthday," 'k?

Love,
Rebekah

“My mother is a never ending song in my heart of comfort, happiness and being. I may sometimes forget the words but I always remember the tune.”

– Graycie Harmon 

Your Birthday is Coming

Dear Aaron,

Yesterday I picked up all the flowers and butterflies at your site. This is the week that they do a full cleanup and everything that is not permanently attached is removed. Since I leave this morning for Arizona, I got it all last night.

But it was hard to leave it with nothing so I didn't. I scattered rose petals from Gramma's rose in the garden and left one big butterfly that had lost a wing in the wind. Placed sideways on your stone, it looked like it was still intact so I left it. And it didn't look quite so lonely that way.

I'm going to see Grampa today and I'll be there through Wednesday. It's a pretty quick trip, but I'm glad for the opportunity. I miss him, I miss Gramma.  I miss you. Wednesday, the day I come home, it will be six months since she went Home. It still seems weird to be in a world where she is not, where you are not. 

Be close, okay?   

One week from today is your 15th birthday. Three years ago, I finally sent out invitations just five days before your party. You were turning 12 and I actually didn't dare send it earlier in case you were in the hospital, or even not here at all. I felt like it might be your last one with us, and it almost was. 

This time two years ago we were in a fight to keep you and you teetered on a knife's edge. The NP who put in your arterial line had said he wasn't sure you would even tolerate that, meaning survive it. I guess that's why they handed me the gown, hair net, mask and gloves and let me stay by your side. You did make it through, and by your 13th birthday, your golden birthday, you were able to sit in your wheelchair. 

But that was the last one with you here, and now your second birthday since leaving approaches. Honestly, I'm not sure what or how to feel.

I know I miss you, beyond words.

Love you beyond words, too.

Love,
Mama

“Sorrow is so easy to express and yet so hard to tell.”

- Joni Mitchell

Butterflies and Baby Steps

Dear Aaron,

Your birthday is approaching. The weather is warm, sunny, and it stays light until about 9 at night. AND it's light when I wake, too. 

I do better in the warm, the light. 

But there was something else, too.

I wrote about finding the butterflies destroyed at your spot. Oh, that hurt. A few friends offered to help me put more out, but I have to find the "safe" place I put them. Sigh...

So anyway, on Monday when I stopped, I could tell there had been a change. 

I got out of the car to water the flowers and look closer.

Butterflies. More and more butterflies!! 

I have no idea who did this, but someone, or maybe a few someones, came by and left so many. 

I cried again, but this time was an overwhelming sense of care, of love.  This is the kind of community we live in. I guess that's part of why the destruction hurt so badly. I didn't expect it here. I see lots of mementos left, lovingly placed, and not bothered at all. 

And your butterflies, the ones that we've put out since you left almost 18 months ago, they had never been bothered. 

And my mama heart cried out in gratitude when I saw your beautiful place.

You know what else I did? Today I actually listened to "Okay" again. Man, I played that song constantly over the years, for you, for me. Singing it at the top of my lungs, music blaring from the speakers, reminding myself, giving myself courage to continue to fight for you.

And then, when you left and I was so lost, I just couldn't. I couldn't. I tried a few times but never got more than a few beats into the song before I had to shut it off. 

Today I listened to it. I couldn't sing it, but I also didn't cry. Baby steps. Stutter steps. And I'm sure I'll crash down again. (That's kinda a given.)

But still, my soul was at peace. 

I miss you, Aaron. I always will.

Love,
Mama

“Butterflies are like angel's kisses sent from heaven.”

— Malia Kirk