I Feel Lost...

Dear Aaron,

It's been 36 weeks tonight into tomorrow. 

How has it been that long since I've held you?

How has it only been that long?

Will Fridays always hurt this much? Will I ever feel "normal" again? 

I go to things, and I miss you. You were always my sidekick. Even if you weren't physically present (and you usually were) I was always aware of you: where you were, what was going on, how you were doing, who was taking care of you; an ever present presence. 

Now you're where I cannot reach you, see you, hold you, talk to you.

And I don't know how to do this!

Honestly, sometimes those waves of grief aren't so bad. They're more than just lapping at my toes, but they don't knock me over. But sometimes, like now, they hit with hurricane force, pushing me down, holding me under, drowning me.  And they seem to strike out of the clear blue without warning. 

Someone once told me the difference between alone and lonely is that alone is a choice, and lonely is a feeling, often in the middle of a crowd. I'm lonely without you. 

I miss you.

Love,
Mama

Everything that changes, where it changes, leaves behind it an abyss.

~Antonio Porchia  

Seasons and Change

Dear Aaron,

The days are getting shorter. The nights colder again.

You left and after a while, winter turned to spring, spring to summer, and now fall is coming and will be followed by winter again.

The grass was brown and sparse when we buried you, and shortly after your grave was blanketed with snow. The roads in the cemetery were icy and once I actually wasn't able to make it up the hill to your spot without going a different way. It was usually dark when I would go by in the morning, and always when I went after work. 

Then the snow melted and grass started to appear; it was a little warmer. It wasn't quite as dark in the evening.  School ended and with Michael's graduation, so did our public school journey. Snoasis to the south of the cemetery opened and I watched very carefully as I would leave at night because there were kids and families out enjoying the sunshine and treats. Sometimes in their exuberance and fun, they didn't notice a car leaving down the road that not many travel. 

Now school has started again, Snoasis is closed, and the days are shorter and nights colder. This morning the heat actually kicked on (I turned it off immediately).  I wonder how long the hummingbirds will stick around. It's not as bright when I go see you, although it's not quite dark yet.

And I'm finding it's hard to come home from work. It's not as hard as it was in January, but things have changed, again. Michael left a week ago. I do get to talk to him still, and he responds. I mean, I guess I talk to you all the time, but I can't hear your voice, and I can't see you. I'm finding I'm not much in favor of these new normals I'm having to adjust to. It's not fun. I miss him. I miss you. 

And honestly, I'm getting tired of people thinking I should be rejoicing in my "new freedom." So far I've kept my filters in place, but it might not be pretty when they get worn out. Daddy has started watching as some people come near and will gently steer me away. I'm grateful for that.

Somehow the world keeps turning, and I guess I am learning to live without you. I can now go out on the back patio without worrying that I didn't ask someone to listen for you. But I still can't work in the garage much, or spend too much time downstairs without getting antsy. I suppose that will come too, but it's not here yet. 

And I find that since Michael left, I'm having a hard time getting out of bed in the morning again. 

It feels lonely with the ghosts and echoes of "before." I don't know what I expected, but it wasn't this.

I love you so much,
Mama

“Spring sang softly as Winter died. I’ll bloom for you; while my heart still cries.”

Angie Weiland-Crosby 

Seen

Utah SOFT picnic 2019

Dear Aaron,

I went to the Trisomy picnic last night, first time since the pandemic I made it.

You know, we tried to go the last two years but you had other plans. Both in 2022 and 2023 we spent picnic time in the ER. In 2022, (I think) we actually went home that night. 2023, not so much... That time we were there for a few days. 

So the last time was in 2019. I'm finding there were several memories made in 2019 that were not possible later. We went to the picnic, like we had so many times. You were in church, and went to concerts and sports events. That was the first (and last) year you participated in the Primary program. You came to my choir concert.  Lots of things I took for granted, assumed we would just keep doing. And then the pandemic. And now you're gone.

But last night... 

Well, last night was good even though you weren't there.

As I was driving up, I noticed that the sky was kinda smoky, and the wind was really whipping. And I just kinda went, "huh". In the past, I would have been on high alert. I actually would have known before we even left, and your breathing treatments would be stepped up. 

This time, it really barely registered until I was there and trying to keep wisps of hair out of my face. And honestly, I missed worrying about you. You were such an integral, intimate part of everything I did, every thought I had, every preparation I made.

I got to see fellow trisomy kiddos: Ashton was there, now 25 but still as petite as ever. Simon (19) on the other hand has really grown! He is so big! Lunah (almost 9) with her big eyes and oh so soft curls, and then Lennie (19 months) who I finally got to meet at last.  

And friends. Dr. Carey who took us under his wing so early on and championed you.  Friends who have been walking with me since we got your diagnosis.  Friends whose own little ones are playing with you. Friends who just get it.

I remember when I went to school at BYU how freeing it felt. I loved New Jersey and my friends there, but it was different. My core beliefs, who I fundamentally was, was very different from most of them and I often felt lost or left out or misunderstood. Not for lack of trying or empathy, they did and so did I. Our life experiences defined us in many ways, and they were different.

Last night felt like coming home and being embraced. These women are so many years ahead of me. Their babies long gone, but still, just yesterday. We never forget our children; we can't. And yet they have perspective I haven't gotten to.  I was known and heard and understood in ways that others simply can't comprehend. I was seen.

Did you feel that way when you reached heaven?   

Was it so freeing? To be free to run and play and express yourself and be understood? 

Aaron, I miss you so much. It is so quiet here! But I know you want me to be okay (whatever that means). 

The refiner's fire burns so hot, and sometimes (often) it consumes me. I know there is work to be done. I'm not "there" yet. So much purifying is left to be accomplished. I know that it's needed, but I don't think we often talk about what it takes to get there, the pain that come with the burning of the dross. I'm trying...

I love you, Aaron.

Love,
Mama

"The language of friendship is not words but meanings."

~ Henry David Thoreau 

Three Things

Dear Aaron,

As I drove to the cemetery this morning to put your butterflies and lights back out, the sun was peeking over the mountains.

Morning, sunrise again.

Somehow this world keeps on turning.

And yet, as I drove, I remembered back when Michael was playing soccer on a team that struggled.

And he was keeper because, of course, why not? 

When the keeper ends up facing 30-40 shots in a half, there's a breakdown up the line, but still, he's the last line of defense and it can be pretty demoralizing, 'cause you know some of those shots are going through.

I would call his name and hold up three fingers. 

Sometimes, maybe most of the time, he would straighten his shoulders, nod, fix a look of determination on his face, and get his head back in the game.

Three things:  Dad and I love you, God loves you, and the sun will come up tomorrow.

My family loves me.

God loves me.

The sun comes up every day.

So life goes on, somehow.  And so do I, sorta.

It's been eight months tonight since I kissed you goodnight and settled into the chair-bed behind your hospital bed. 

Just after midnight will be eight months since your heart slowed and stopped, and mine seemed to lose its own rhythm. 

I realized today what a blessing to me it actually was to have you go before Michael left. When you went, he was still here, and shortly after Jonny and Avanlee and Elend were here. They stayed for two months, left briefly and then were back for another month. Michael just left yesterday. As excruciating as it was to live through your death, I had distractions. To have come home to this silence from the hospital would have been unbearable. 

Honestly, I'm still not sure how I walked out of there without you, and how we made it home. 

I miss you, Aaron, I really do.  And I need to get my head back in the game, 'cause while your whistle has blown, mine has not. 

Are you hanging out at the MTC with Michael? Is he aware of your presence? He needed a key chain he could take with him, and when I asked if he wanted the little one with your name on it, I barely finished the question before he exclaimed, "Yes!" 

He carries you with him in so many ways. I hope you carry him as well.

Love you, little man. 

Love,
Mama

"Life blooms right through death,

and they beautify each other."

~Terri Guillemets

Ghosts

Ghosts roam my house.

They run down the stairs and through the hall. 

The echos call: "Mom, look!" "Mom, can I..." "Mom, will you..." "Mom, I can't find..." "Mom, I need..."

Backpacks on chairs.

Looking for cleats.

Clothes all over the bedroom and dishes on the counter.

Toothpaste globs in the sink.

Laughter, knock-knock jokes, Dad jokes.

Crying, yelling, dirty faces, soccer balls and baseball mits.

Piano plunking. 

Frustration over homework. Pencils, pens and papers lying around.

Constantly full dishwasher and four gallons of milk that won't last the week.

Pillows and blankets on the floor in front of the TV.

Books upside down on the couch.

Lights left on and doors ajar.

Bikes and scooters on the driveway.

Impromtu soccer, basketball, football.

Stitches and broken bones.

Whooshing of medical machines in the front room.

Wheelchair and medical food. 

Squeaks and squeals from happy babies.

Laughter as big brothers spin the wheelchair around.

Early morning alarms, late night talks. 

Carpools upon carpools.

Baseball and soccer tournaments, ballroom competitions.

Choir and band concerts and marching band.

Violins, trumpet, trombone, even a tuba.

All gone...

Silence.

Ghosts.

I try to catch them, and they whisper back...

We're grown, we're gone. 

Counters empty.

Beds made, rooms clean.

No waiting up for someone.

Just the two of us and the dogs now.

It's so empty...

So quiet. 

The past echos in my ears. 

Empty nest, all flown. 

“Ghosts are those memories that are too strong to be forgotten for good, echoing across the years and refusing to be obliterated by time.”

- Caitlín R. Kiernan 

First Day of School Without You

Dear Aaron,

Today's the first day of school, but not for you.

I saw buses as I walked this morning. Facebook (and probably Instagram) was peppered with pictures of 1st graders, 3rd, 5th, 9th, 12th... 

Several times I was not prepared and missed 1st day pictures, at least for some of the kids. It would turn into 1st week of school pictures, but I got them. Backpacks and lunches packed, clothes picked out, one of the few mornings when I would actually get a real breakfast made. And hugs as you all went out the door. 

But not today...

Today gripped me all over again. 

I sobbed and yelled again on the way home from work. 

In my mind, this wasn't supposed to be how it happened. 

You were supposed to be starting high school, 9th grade. Holli would have been with you. The bus would have picked you up, probably late because it's always hard to judge those first few days. 

Instead, I went to your grave this morning before work to put your lights and butterflies back out. I got there just as the sun cleared the trees on the eastern side of the cemetery. Your smile greeted me, but I have to say that granite is a poor substitute for a warm, laughing, silly, alive little boy. Or I guess, big boy?  

Michael leaves next Wednesday. It's gotten a little harder each time we've dropped off a missionary, and I figured Michael's would be the roughest, but I had no idea how hard it would be. 

I'm trying, Aaron, I really am.  

I'm trying to eat better, to go walking, to appreciate all the beauty around me, and it really is beautiful. 

I tried to remind myself that I'm not losing you, I'm letting you go. It seems a little better that way, but only a little.

Sometimes I just need to give in and feel the pain, 'cause it's very much there, too. 

Today my arms ache, literally ache to hold you, and you're not here.

Oh, I miss you....
Mama

"Grief is the deepest, swiftest river you will drown in”

― Jane Edberg

The Miracle of You

Dear Aaron,

I sit here as the sky darkens, the scent of sagebrush after a summer storm is in the air. My hummingbirds flit around their feeder, chasing each other off. It's 33 weeks today since you left.

Inside, a sister and a few brothers hang out talking. Joseph and Sarah are here from Southern Utah and Matthew and Kensey have flown in from Wisconsin for the weekend. 

We spent the day in the temple today for you. Sweet, tender, and still hard. 

Oh, my beautiful boy. When someone saw your birth date, he remarked, "He was just born in 2010!" That is kinda different; many are people born 100 or more years ago.  Yeah, it wasn't very long ago, not nearly long enough, and he asked about your story. I told him you were the greatest blessing our family ever received. He asked what happened and I explained that your body was fragile, your heart and lungs tattered, and when you got Flu A, it was just too much for you. But it was your time. You held on for so long, probably 22 months longer than we had any right to hope for.

But hope, hope is fragile and yet strong, and hope we did. And pray. And work. And trust. And plead with heaven to spare you. 

The day before you left, a friend gave me a stone heart. The first few weeks after you left, it was in my hand more than anywhere else. It still is always in my pocket. I'm never without it. And today in the baptistry, and the other rooms, it was in my hand again. Somehow it grounds me, connects me, and reminds me of the truths I know. 

I know you still live, just not here.

I know you still love me, and know of my love for you.

I know you are healed and now a perfect reflection of your perfect spirit.

I know I will see you, hold you, speak with you again.

We hear of ministering angels. What I don't know or understand is how we were so blessed to be able to minister to an angel, and now I feel you minister to us. 

What a blessing to be tied to each other.

What a miracle you were, you are. 

I love you, Aaron.

Miss you so much, but love you even more.

Love,
Mama

There can be miracles

When you believe

Though hope is frail, it's hard to kill

I Miss You

Dear Aaron,

I miss you.

I guess that's not anything new.

Facebook reminded me that nine years ago today was the Alpine Days Parade. A good old-fashioned hometown parade, kids scrambling everywhere, gathering candy, smiles. One little boy passing out treats saw you in your wheelchair on the side and brought three pieces over and put them on your lap. And I cried. He saw you, he saw you. 

I cried again today remembering. 

I've got some thoughts bouncing around in my head, but they haven't quite settled yet. But like I've said before, this grief stuff is weird, and unpredictable, and just hard!! 

I know there are those who think I should be "better" now. There are even times I wonder if I should be. I know that's not how it works, but still, my mind goes there. 

And then it goes back to you, and the pain hits all over again. 

I saw a grey dove this morning as I left for work. It swooped over to the neighbor's tree as I backed out, and then back across the driveway. As I pulled down the driveway, it was perched on the gable above Michael's room. 

It brought a smile to my face and made me think of you. My guess is the feather I found in the grass came from it. 

I'm not sure why, but I find myself in tears often again, especially on the way home from work. Is it because I'm tired? Because I've been working hard to compartmentalize? Or because yet again, we've lost another member of our community. Dawson was one of the few boys older than you, and now he's in heaven, too. 

I find myself pulling back from people, from less vital connections. I am more inside myself and with my family. But even there, I am watching more, interacting less . . .  maybe more introspective? I don't know. I just know that sometimes it seems like too much to put forth the effort. 

But then, you always did try hard, and I'm trying to be more like you. I hope it's okay that I don't always manage. 

Love you, kiddo.

Thanks for being mine, please stay close.

Love,
Mama

“Any woman who’d ever lost a child knew of the hollowness that remained within the soul.”

- Brittainy C. Cherry 

I Will

Dear Aaron,

I spent this morning looking through family history documents trying to find who painted a picture I had a copy of.

Some people refer to those my age as the sandwich generation, caught between our children and our parents, both needing help. Today I realized for me it is different, in a good way. I'm sandwiched between my amazing children and my incredibly strong ancestors, including my parents. 

Sandwiched between giants who hold me up, cherish me, and give me strength to do better. 

Many of those who have gone before me have buried babies, some of them multiple babies. They endured hardships far beyond anything I have yet, and I hope never to experience them. And yet, they moved forward in faith. Faith that life was still good, still worth living.

My children have their own challenges. Yours have been well documented while others have been silently endured.  And yet, you persevered, and they still do as well. 

I found a feather in the grass tonight. I don't remember ever seeing a feather outside. But tonight, after Jonny and Avanlee and the kids left, there it was, a small white feather. 

A reminder of you.

I love you, Aaron. I'm gonna make it, even though it's hard. I will also persevere. I owe it to those who came before, and to those who come after. 

I owe it to you.

Love,
Mama

“All we have to decide is what to do with the time that is given us.”

— Gandalf 

Walking By Faith

Dear Aaron,

So it's been 32 weeks now since you left, and 7 months yesterday since your burial. 

Your stone is in place.

The grass is growing (mostly).

I bought a new car. I don't worry about nursing schedules, or meds orders, or finding places for your many supplies. I can just leave the house without making sure people are being cared for. That hasn't happened since Deborah was born almost 33 years ago. It's weird. 

This morning as I lay in bed I thought about your room, what it looked like, how you used to be just on the other side of my wall. In my mind, I could still see you there. I could almost imagine it hadn't changed, but it has. It looks so different now with the couch and chair, the piano where your bed was. Your big cheeky smile on the picture in the corner, instead of grinning from your face in your bed while you play with your toys. 

I stopped by your spot last night and walked around a bit. As I stood a little ways away, looking at the back side, it struck me yet again. "Beloved son of William and Rebekah  Youngest brother of Deborah, Mary, David, Jonathan, Matthew, Joseph, Andrew and Michael" 

And you're body is there, not here. And your soul lives in heaven. 

I miss you.

I'm trying, really, I am. 

I look back at your life. We packed so much into it! Your smiles, laughter. The joy you found in the little things: stories, songs, movies, being with people, just being. You enriched so many lives, made life possible for so many. 

I sit still, let it in, the pain and comfort, the joy and sorrow, grief and love. It's hard, but I'm growing through it. 

I don't grief ever truly leaves; I think it evolves. I mean, it would mean I didn't miss you and I always will. 

You are etched into the walls of my heart. 

I will keep moving forward, even if I feel lost.

Love,
Aaron

“I will walk by faith even when I cannot see.”

-2 Corinthians 5:7