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 

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 

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

June 1st

Dear Aaron,

A crystal pendant hangs in my window where it catches the morning sun and sends rainbows into the room. 

"Look for me in rainbows...

And I do.

Another that Gramma and Grampa gave me for Christmas a few years ago hangs in my office window. Another on the back door. An angel on my rearview mirror.

I see rainbows everywhere. And I see you, too. Not with my eyes, with my heart.  

June 1st, and Facebook reminded me today that once again, you were admitted to the PICU on this date. It was a lights and sirens call, bagging you on 20 liters all the way there. A few days later I placed a call to Andrew's mission president to let him know that you might not make it.  

June 2023

But you did. Your golden birthday wasn't what I had planned in my mind, but we held it. Child Life and Social Work brought decorations for your room and we sang "Happy Birthday" (through tears).  

Three years ago I felt like that birthday, your 12th, might be your last one. It had been a rough few months and you were struggling; I worried. We had a big party where friends and neighbors came by. I wanted to do it again for your 13th, but there we were, in the hospital trying to nurse you back to health. 

June 2022

Last year, this year... You're not here.

Your birthday is in 12 days. 15 years old. As I think about it, sitting here on the patio, I smile even through the tears. You are an amazing soul, my son. I cannot understand what I did to deserve having you teach me. 

Right now, the crickets are chirping, a bee is buzzing somewhere close by, and the hummingbirds come to sip at their feeder. The dogs are lying on the grass and the sky is blue. I see your butterflies, your flowers, the raspberries growing and I am grateful for the peace, the chance to sit and think about you. 

I miss you, Aaron. I miss you so much.

I'll look for you in rainbows. And everywhere.

Love,
Mama

“How lucky am I to have something that makes saying goodbye so hard.”

- A. A. Milne 

Marking Time

Dear Aaron,

Yesterday was your Andrew's birthday. You are so special to him. He had someone ask him how he could believe in believe in God after losing you at such a young age. He replied, "The reality is that I didn’t lose anybody the night he died. Because of God and his son Jesus Christ, families are forever. There is a God and his plan is perfect." I am so grateful for his testimony, for his strength and courage. He is an amazing young man.

I know those things are true, but I also feel like I'm walking through a fog, marking time.

And maybe that's what it is: marking time. Clocks tick, the sun comes up and goes down. Get up, go to work, come home, go to bed. Do other things in between. Weeks pass... Still passing... You're still not here. It's two weeks tomorrow until your 15th birthday. 

It's getting hot again, into the 90's this week. I'm wearing shorter sleeves and your trach beads on my watch band are catching people's eyes. I mean, they just look like a nice beaded watch band and so I've been asked where I got it. Sometimes I tell them where they came from; sometimes I just say I made it. Sometimes I can explain; other times I just can't. 

Someone destroyed about half the butterflies on your grave between Monday and Tuesday. It hurt, and I was angry! I mean, I know I screwed up as a mom, on more than one occasion (even if your siblings won't usually admit it). But I never let them, even as toddlers and babies, destroy someone else's things. When we were out in public, or other places, I watched them or made sure someone else did! Some people suggested that it was unreasonable to expect them to be left alone, or that maybe it was a bored kid. I wanted to ask if someone destroyed things on their loved one's grave if that would be okay, but I didn't. So Tuesday I was angry. 

Yesterday I broke down. 

And now, now I feel numb.

Next week I'm going to see Grampa for the first time since Gramma's funeral. 

I miss you, Aaron. I miss her. Her roses are blooming nicely in the little garden. Your clematis is kinda struggling a bit. It might be too warm where it is, but I'm hoping I can nurse it to a more sturdy plant. Anyway, I feel like I'm rambling, and perhaps I am. 

Your Scout dog is in the front room now and Linnaea found it. She was playing with it, and it caught both me and Andrew a little off guard to hear it say, "My favorite color is red! Is that your favorite too, Aaron?" Both a smile and a tear... 

Oh baby, 75 weeks tomorrow since your eyes last opened.

I miss you.

Love,
Mama

“There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds.”

― Laurell K. Hamilton