Girl's Camp

 

Dear Aaron, 

As I sit on the porch of a mountain cabin and try to write to you on my cellphone, I'm drawn to the contrast of what life was like during your life. Birds are chirping, a hummingbird flits around, and the wind rustles through the trees.

Facebook reminds me of those times: happy times, scary times, and times I mourned for friends. Times filled with beeps and tears, joy and pain.

Fifteen years ago yesterday your echo read "normal cardiac function." After being rushed to the PICU in heart failure a few days earlier, I think you could have powered the whole hospital on my joy and excitement! 

A year later, you went in emergently for your second lip repair due to a massive hematoma that we initially thought was a significant infection. Having received the news that the full repair had been done instead of needing to leave the wound open with drains, I walked into the PICU and realized my body's reaction to the smells and sounds I was hearing. It was the first time I wasn't so focused on getting to you that the sensations registered in my conscious brain. I felt an immediate tightness, and increase in my own heart rate. 

And then the next year it was my friend's son, the little boy who lived only a couple miles to the west of us, who lay so still, so fragile, and on the cusp of his own journey back Home. 

And then on through the years, until you left and now I'm here with the girls from church, and we have grandbabies in our life. Linnaea is the only one with her own memories of you, but the rest will know you through pictures and stories. 

And now you experience it all. The camping, the sunrises and sunsets. Do you fly with the hummingbirds? I see so many this morning. Or scamper with the chipmunk that just ran across the porch? 

Do you children that came to teach us in your tattered bodies with perfect souls get together and look down at us, sending love along heartstrings that are still so strong? 

We miss you. 

I miss you. 

Love, 

Mama 

"Heaven is under our feet as well as over our heads."

Henry David Thoreau

The Body Remembers...

Dear Aaron,

I've been cranky, irritable. My birthday was Wednesday and it just felt odd. There's some things going on with someone that is near and dear to me, and all I can do is pray and listen. So I chalked it up to all that. Plus unwanted home repairs and really hot weather.

But then Facebook reminded me of 15 years ago.

Fifteen years ago last night I was also cranky and irritable, and antsy. I spent about an hour on the phone with the on call pediatrician trying to figure out what to do. You were "sorta" okay. I mean, you looked pretty good except something was bugging me. We decided to just turn up your oxygen when you were eating to give you a bit of a boost. Now at the time, "up" meant from 1/32 of a liter to 1/16, barely a whiff. 

Fifteen years ago this morning, you spit up (not a lot, and not the first time) but I'd had it. I told your dad that I was sure I was neurotic and paranoid, but I needed a professional to tell me that so I was taking you to the ER in American Fork, maybe they'd do a breathing treatment and I'd be back in a couple hours, maybe longer if they were busy. 

Now that statement should have given a clue to my clarity of thought. No four week old baby, and especially one that is compromised, is going to walk into an ER, get a breathing treatment, and leave. Yeah, it didn't happen that way. 

They diagnosed pneumonia, and I was so confused! How could that have happened?? They weren't certain although some ideas were tossed around, but the long and short was they told us they were sending us by ambulance to Primary's to be admitted. At the time, the only thing I knew was that Primary's was somewhere towards the north end of Salt Lake County; good thing the ambulance driver knew where we were going. 

We were admitted to the floor, antibiotics were started, and my head swam. The next morning however, things changed. Your heart patterns changed, the nurse heard things she didn't like, and we landed in the PICU with a new diagnosis: heart failure.

Sigh...

And now I know why I was so on edge yesterday. 

That ten-day stay left its mark on me. The learning curve was sooooo steep! And the lack of sleep was significant. 

When we did discharge, I asked our attending what the outcome would have looked like if I hadn't taken you that Sunday morning. She gently told me that if I had waited until I could identify a problem, they would have been able to make you comfortable but otherwise.... 

That was the first time, but certainly not the last that I didn't know why I needed to get help but went anyway. Each time further reinforced how God knew your days and you would live every one that He designed. 

Even that last admit, December 2023, we sought help in time. But that time, that time Flu A ravaged your already tattered heart. He knew it was your time. He called you home. And I still, still wish it had been different. 

But even though I wasn't done (and never would be), you were. In His mercy, He took you Home. I trust that when it's my turn, you'll come get me. I miss you, Aaron. Thank you for all you taught me.

And I suspect that there will always be dates that my body remembers, even when my brain does not. 

Love,
Mama

"Our bodies are the texts that carry the memories and therefore remembering is no less than reincarnation"

– Katie Cannon 

Held

Dear Aaron,

As I sat in Sunday School yesterday, a painting caught my eye. I've seen it many times, but somehow yesterday, it spoke to me.

The expression on her face, the pain, the sorrow, the weariness and exhaustion, and yet a glimmer of hope. As she held His hands and felt His love, a sense of being seen as she truly was: a daughter of God and cherished by Him. 

Oh Aaron, it resonated within me. He knows our pain, He knows my pain, and He came to bring me hope and love, to see and understand me. 

July 4th brought fun times and memories. There was a flyover by Air Force fighter jets. Linnaea keeps calling them "fighter drones," I guess that goes with what she understands. Anyway, they flew south several miles to the west. We could see and hear them, but it was far away. And then as we came down the hill, they had circled over Pleasant Grove and were flying north, right over our heads! What a thrill! I remember running across the field, not much older than Linnaea is now, as the Thunderbirds flew at the Air Force Academy. It almost felt like I could reach up and touch them. These were higher, but still low enough that we watched them climb to clear Traverse Mountain.  

Hamburgers and hotdogs on the grill that evening and then fireworks at the park brought more fun times with the family. Linnaea and Barrett had a great time climbing up and down, and Barrett tried hard to catch the Black Hawk helicopters that circled over the valley. We made fun t-shirts for the grandkids with Linnaea's and Elend's hands, and Barrett's and Sterling's feet. Do you remember making the Four Seasons prints that hang in my office?   

The flowers in your garden are beautiful, except the clematis which is struggling. I have agonized over it; I didn't plant it well initially and have been fighting to keep it alive. It doesn't look well at all. This morning I dug down to the roots to check them out and they do seem to be okay, so I guess I'll just keep tending it and hope it comes up better next year. I'm told that it is a hardy plant and that even when it seems like it's "done" it can surprise you, maybe like you did.

You weren't "supposed" to live, and you went to the edge so many times that I think that's why when you did go it was such a surprise. You had cheated death so many times it didn't occur to me that this time would be different. So maybe this plant is more like you than I thought. It has been injured but is stronger than it looks. I hope so... 

I miss you, Aaron. I try to stay busy and mostly I succeed, but still, the underlying rhythm of life thrums with your absence. Like a white noise that sometimes fades into the background and is unnoticed but still there, it permeates the atmosphere. 

Except this is more like the absence of sound which still rings in my ears. 

So I will cling to His hands, knowing that He holds me, holds you. And maybe I'm also like the clematis, fighting to find my way in a world that no longer knows you. 

Miss you, Aaron.

Love you.

Love,

Mama

"You can find peace amidst the storms that threaten you."

-Joseph B. Wirthlin

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