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 

Get Me the Chopper!

Dear Aaron,

I'm not sure if I've gone this long without writing to you.

It's not due to lack of thoughts and feelings, in fact the opposite. 

I cried the other day while driving for the first time in a while. It just hit me out of the blue, that ache, that missing of you.

So many things have been happening, and each probably deserves its own post: Michael and Daddy and Matthew's birthdays. There was a huge announcement in the Trisomy world that AAP (American Academy of Pediatrics) no longer considers T18 and T13 "incompatible with life." Such a significant blessing for families! 

And then there's the house stuff. Holes in walls for stabilizing piers, broken water main, and yesterday a massive flood in the basement from a broken sprinkler joint. Sometimes this just feels like too much. 

But on Thursday, I saw a notice about a Go Fund Me and funeral for the man who saved your life almost 15 years ago. And just about everything else recedes a bit into the background.

The day after Thanksgiving, 2010 (can you call it a day if it's still the wee hours of the morning?) you were struggling, big time. I didn't know enough yet to have recognized it earlier, but the signs were there. Dad was in St George with some of the boys for a soccer tournament and as I lay in bed hearing your alarms, I wondered if there was a problem. And I remembered hearing Dad say that I had never been wrong yet when you needed help, so I got up and went out.

I asked our nurse how you were doing. She said, okay, but maybe you needed looking at. (I also had no idea she wasn't the "experienced" nurse she and the company had represented her to be.) I wasn't yet confident in my ability to get you to the hospital on my own so I figured I'd call for help. But the nurse didn't seem worried, so I went down, woke your sisters and went to get dressed before calling.

A few minutes later, one of your sisters was at my door asking if I'd called yet because the nurse said we needed help. I hadn't but quickly did so. You were decompensating so fast!

When the guys walked in, Brian Dowd took one look at you from the doorway to your room and turned to his partner and said, "Get me the chopper!" 

Oh....

He then proceeded to quickly assess you and ask for information. He involved me. (Much later I learned that one of the biggest protective factors against PTSD is the ability to do something in a situation; to not feel helpless.) He asked if I'd ever changed your trach. Yes, in fact the day before. 

"Okay, so you prep it, I'll pull the old one out, and you put the new one in." He then proceeded to bag you up to 100%. He could feel your lung compliance (or non-compliance in this case) and was able to use the bag to help reinflate what I didn't realize was severely collapsed lungs. 

As the chopper arrived and Lifeflight nurses came in, he gave report. Even so, by the time you landed at Primary's you were crashing again. 

He later told me that while working part time and waiting for a full-time position at Lone Peak, he'd been at South Davis, a long term facility for people, and especially children, with trachs and vents. He was super familiar with trachs and vents and all the "fun" stuff that can happen with them. That doesn't happen often with paramedics. 

Had Brian not been on duty that night, I'm sure you wouldn't have survived. I suspect you would have gone Home right here, with your sisters looking on, Daddy and the older boys in St George, and Michael asleep upstairs. 

We would not have known a Christmas with you. You wouldn't have gone to school, met people, influenced so many others. You are part of the reason the "incompatible with life" label was changed. You are the reason many babies have lived. You are the reason I went back to school and now help others with their trauma. 

And without Brian that night, it wouldn't have happened. 

Over and over I've said that Father knew the number of your days. He knew Brian would be on duty that night. Details were arranged so you could stay, stay for just over 13 more years. 

My heart aches for his family, his wife, the community. We will never forget what he did for our family. 

Were you there when he showed up ten days ago? I suspect you were. Please thank him for me. What he did cannot be repaid. 

I love you, Aaron.   

Still miss you so much.

Love,
Mama

“What we have done for ourselves alone dies with us; what we have done for others and the world remains and is immortal.”

– Albert Pike

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