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 

Time...

Dear Aaron,

The seasons have rolled around again. There's more sunshine than darkness in the world right now, the air conditioner is on (sometimes), and as I leave the cemetery there are lots of kids and families to watch for enjoying Snoasis. 

High school graduations are this week and we've made it through our first year with no students in public school. You would have just finished 9th grade.

Seventeen months ago today you left us. 

74 weeks tomorrow.

517 days...

Tonight we'll go to your grave and decorate it for Memorial Day. I got new flowers to replace the ones that have faded over time, and there will be lots of butterflies. Gramma Brown sent bunches last year because she wanted to see it covered with them. 

It seems to be a softer time now. I don't cry every day anymore, but I still think of you so, so much. Like every time I wake up, or go to sleep, or see my screen saver, or your crystal angel hanging from my rearview mirror, or... or.... or....

Well, you get it. 

I'm fully licensed now, Aaron. I passed my test and did the paperwork, and now I have a big ol' "L" to go with the CSW behind my name. But I really don't feel any different. This was a long, long road that actually began before I even realized it.  You did this. You started me on this path. And I'm so grateful.

I miss you, kiddo. 

Love,
Mama

“It has been said, 'time heals all wounds.' I do not agree. The wounds remain.
In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.
But it is never gone.”

― Rose Fitzgerald Kennedy 

Missing our Future Memories

Dear Aaron,

It hit me (again?) today while driving home that there are no new memories to make with you. I mean, it makes sense (as much as anything about you being gone makes sense). But today, somehow, it was more definitive, more "real" I guess.

It was a long day, a challenging day and I didn't head home until almost an hour and a half after I had expected to. And as I thought about your pictures, I was struck again with how there are no new ones to be had. Ever.

Yesterday was also challenging, but in a different way. Yesterday I took my licensing exam. 

And I passed!! 

Honestly, I don't remember being more nervous about a test in I don't know when. Like ever, maybe. But I did it, and now there's just paperwork to get my "L".  That doesn't seem quite real either. 

So in the morning, I was trying to stay busy and found myself up in your closet, the one with all your clothes and toys and blankets. It is well past time to remove batteries from those that have them, but I hadn't been able to do that before. I brought the toys downstairs and wrestled them out.

And then I got to Scout, still wearing the socks you wore to the hospital that final time, the ones I took off and put on him so we wouldn't lose them.

I couldn't do it. 

I just couldn't.

Instead, I pushed the buttons and listened again to "5, 10, 15 minutes of lullabies." To "My favorite color is red. Is that your favorite, too?" 

"I'm feeling sad. Will you give me a hug?" I did. 

And "I love you, Aaron!" 

Scout talked and sang so many, many, many times over the years. In fact, you wore one out and we buried it with you. In the hospital, at home, during the night when I was trying to sleep but you insisted on playing. 

And I just couldn't silence him. On Tuesday, I picked up your butterflies at the cemetery. As I did so, I walked around to the back and read the inscription again. "But there is a resurrection, therefore the grave hath no victory and the sting of death is swallowed up in Christ. Beloved son of William and Rebekah. Youngest brother of Deborah, Mary, David, Jonathan, Matthew, Joseph, Andrew and Michael."  

Oh my son, my little boy. I will see you again. I will hold you again. But until that day, my heart aches. I miss you. Somehow, I'm learning to live without you in this world, but it hurts. You are so loved.

You are love.

You are most definitely compatible with joy.

And I miss the memories we cannot make. 

I love you.

Love, 
Mama

Recalling days of sadness, memories haunt me.
Recalling days of happiness, I haunt my memories.

~Robert Brault

Hummingbirds and Mother's Day

Dear Aaron,

The hummingbirds are back.

I thought I heard one earlier today when I was working in the yard, but didn't see it. Now I'm sitting on the patio, finishing reviewing for my test on Wednesday, and they (or it?) keep showing up. I'm not good enough to tell if it's the same one, or multiple. But they're back, and it feels good. 

The weather is just the right amount of warm. Gramma's roses are beginning to bloom, and I'm hopeful that some of your flowers will come up soon. The sun is going down, but still well above the horizon. The dappled light comes through the trees that are beyond the bud stage, but still have the new spring green color, not fully developed yet. 

I hear the crickets chirping and Sophie is laying by my bare feet. A bird just flew through the yard. The fresh-cut grass smells of summer. 

And tomorrow is Mother's Day. 

Last year, I wasn't here, I was in Arizona with Gramma and Grampa, and the day after, I called the ambulance for Gramma. This year, she's with you in heaven. 

It's my first Mother's Day without my mother, and my first one here at home without you. Last year I avoided it; a new place, different focus. But I'm grateful I was with Gramma, so grateful. I think I took her for granted all those years. I mean, I never knew life without her. She was a constant presence, even if we weren't together.  I figured she always would be.

Like you, I see her in so many things: the wind wheel outside my office window, the blanket on my bed, the fleece shawl I keep in the car that she made with "I Love You" embroidered in the same color so really only I know it's there. And the bracelet she gave me a year ago that was supposed to be about you and now signifies her as well. 

I miss you. I miss her. Two significant pieces of my heart are missing. 

I'm so grateful for my family. All but you and Matthew and Michael will be here tomorrow, and I'm sure the two of them will call. It will be loud and chaotic and crazy. Eleven adults and four small children create that, and it will be beautiful. 

But still...

Oh Aaron.

My last one, my forever baby, the one I meant to take care of for as long as I could imagine.

And I guess in a way, I still do. I carry you with me; your memory, your love, your inspiration.

Is the hummingbird that keeps coming back your way of saying "hi"?  I hope I make you both proud.

Sending you all my love...

Love, 
Mama

Hope is the thing with feathers that perches in the soul, and sings the tune without words,
and never stops at all.

- Emily Dickinson 

Jonah Day

Butterfly release

Dear Aaron,

It's been a Jonah Day. 

I mean, I guess not really, but still...   You could call it a comedy of errors but I'm frustrated and not laughing. 

Maybe the universe needed to get some balance back.

Yesterday was pretty amazing! I woke up a little early and had lots of energy. Before I even left for work I weeded your (small) garden and planted a bunch of seedlings, and hoped for rain. And it did! I did two loads of laundry and got to work on time feeling like I had already put in a full day but still with the energy to keep going! Like I said, it was a good day!!

This morning, I woke up at 4 am with a headache, and when the alarm went off I was sound asleep again. And then my glasses were nowhere to be found. Apparently I fell asleep with them on and they fell down the top of the bed. I had to find an old pair to put on to even see them! I had no energy, but still needed to get going.

Primary's Memorial Program 2024

I couldn't find my earbuds which I needed for a Teams call today. I went through my backpack twice. (They're supposed to be in a small bag inside there with other electronic supports, nope.) So I left the house early thinking I must have left them in the Pleasant Grove office yesterday. Drove there, nothing. Drove to Saratoga Springs and emptied my backpack a third time. They were there all along, in the wrong small bag.

BUT I was missing my tappers which I wanted for a later session, and I had also offered to another therapist. Those are big and I knew they'd been on my desk in PG. So I sent a colleague a message and asked her to look on my desk so at least I knew where they were. Nope, not there. When I got home, guess what was on the floor where they'd fallen out. 

Sigh...

And did I mention, no energy? Zip? Nada? I made salads for dinner (which is super easy) but I told Daddy that he had no idea how close he came to scrambled eggs instead. Those would have been fine, but I wanted (needed) the veggies instead. 

And tonight I've been trying to study for my test. I'm super stressed about it. Going through flashcards, I wonder if I even went to school for this stuff. 

Like I said, woe is me, Jonah day. 

But like Alexander in the "Terrible, Horrible, No Good, Very Bad Day," some days are just like that. 

My guess is sometimes you felt that way too, and somehow you kept going.  

Missing you, kiddo. The rain has been good. It watered the grass (the sprinklers are currently not functioning) and cleaned off your headstone. The moisture will help the flowers to grow. Gramma's rose bush has more new buds on it. Your place in the cemetery is greening up.

Life is moving forward, and that's a good thing. 

But still, I miss you. I miss who I was with you. I feel pulled in two opposite directions, forward with the movement of time, and stuck on December 23rd, 2023, still trying to figure out how your heart stopped and mine did not. 

This is weird. 

Love,
Mama 

“Grief is a courtship with death” 

- Jane Edberg

Lend Me Your Strength, Please...

Are you in the stars I see in the night?

Dear Aaron,

My soul hurts. I am weary. This is hard!

Today a few different people, including a caregiver and unit secretary asked how I was doing, and I answered honestly, "I'm okay, most of the time I'm okay, but sometimes I'm not." And it's true! 

But tonight seems to be a "sometime." 

I went to the ward picnic tonight and fought to stay as long as I did. Oh, everyone was great, nice, talkative. Linnaea had a great time and Barrett was so cute. The food was fabulous. And I just felt so alone anyway. 

I miss you so much.

Tomorrow, the Sunday before Mother's Day, is Bereaved Mother's Day. And I don't even want to get out of bed.

How has it been 71 weeks without you, and yet if I hold still and close my eyes, I can almost feel your hand in mine, your soft hair under my fingers, smell your skin. But when I open my eyes, it's all gone, vanished away. 

You were the strongest person I ever met.

Will you please lend me some of that strength?

Love,
Mama

“A broken heart bleeds tears."

Steve Maraboli 

Missing You

Dear Aaron,

I'm feeling meloncholy.

And lost.

And.... I don't know.

So many activities crammed into this weekend, which could not have happened if you were here. I'm grateful I could participate, and yet I wish you were still here.

Friday your Joseph graduated from SUU. Saturday was Sterling's first birthday party and after we went to your cousin's endowment. And my mind went back to yours. As I sat in the celestial room, I saw rainbows on the floor, the biggest one shook gently. A few months ago a friend gave me a prism with "Look for me in rainbows." And so I do. 

I feel like I'm leaving you behind, and yet I don't at the same time. 

Some of my memories fade, but I carry you with me. I wear your trach beads on my watch band, the bracelet that Gramma gave me a year ago. The butterfly on my car, the beaded angel on the rearview mirror. 

I work in a field you brought me to and I'm taking my final licensing exam in two weeks. You brought me to this, and now you're gone. 

Today I volunteer at a memorial for children who joined you in 2024. I did this in 2021 and 2022. Last year our family went. And now I go to help other families in this awful horrible club that no one ever wanted to be part of.

And yet, it holds some of the most beautiful, strongest people I've ever known, strong because that was the only choice we were ever given. 

Love you, my kiddo. 

Love,
Mama

"The life of the dead is placed in the memory of the living."

Cicero

He Is Risen

Dear Aaron,

He is risen.

You are not, yet.

The Tomb is empty; your grave is not.

But I have faith that it will be. 

And so will Gramma's.

And so many others.

I honestly don't remember a lot about Easter last year. I remember sitting in the front room, the room that holds many mementos and even more memories, watching the sunrise while snow fell. But not much beyond that. 

This year is warmer (also later) and somewhat quieter in my soul.

At least for the moment.

I planted flowers in your garden yesterday (and I'm super sore today). It was hard work, trying to rip out the stubborn grass, dig holes deep enough. But I also kept thinking of you and everything you endured and figured I could handle it. 

I planted a Gold Medal rose bush for Gramma, and a Henri V clematis for you. Yellow roses were her favorite, and clematis stands for ingenuity and mischief; two characteristics that seem to fit you. The flowers are white symbolizing purity, faith, new beginnings and love. Now I just hope they do well.

There aren't pansies in there because they won't withstand the summer heat, but there will be marigolds, alyssum, and forget-me-nots around your stone. There are sweet peas and snapdragons. And hopefully petunias. A variety of colors and scents; a beautiful garden to remind us of your beautiful soul.

Your last Easter morning here, 2023. You were
so happy to be at church!

This sun is rising. Time for sunrise in Alpine is said to be 6:41 am, but it doesn't seem to take into account how close we are to the very high mountains on the east. And so it seems to take a long time to see the sun. Those mountains comfort me, protect me, help me feel safe, but they also hold back the sun. 

The sun will come up; it is coming up. It's just taking time. 

And so will this. 

Time for my soul to find peace, and time for grief to wash over me, again, and again, and again. 

I will not stop missing you until I hold you again, and yet I also find joy and comfort in this life. 

Happy Easter, Aaron. Happy Easter, Mama.

He is Risen, and someday you both will rise as well.

Love,
Mama

Easter Sunrise 2025

"The very first Easter taught us this: that life never ends and love never dies."

- Kate McGahan

Dreams...

Dear Aaron,

I'm struggling.

This is hard.

It hurts.

And I don't know quite why today feels so different than other recent days. 

Maybe it's the unmet expectations I have for myself. I look around and there's so much I want to get done... And then I sit. Or like today, I get stuck in traffic, both going and coming! Guess I need to be grateful I was the one stuck behind the wrecks and not part of them.

And I'm anxious, too. I finished my hours to be able to take my licensing exam and registered for that on Monday. I'm simultaneously excited and terrified, but it's coming, four weeks from today.

And you brought me here. Somehow I feel like you should be here celebrating with me. 

Are you? 

Is Gramma?

I dreamed of her the other night. She was so young and vibrant. Her hair was so dark, her skin clear and bright. She was sitting on a bed playing with and taking care of some small children, but I didn't really notice them. I was distraught, upset, and told her this was too much, too hard, and I was so tired of doing everything.

And gently she replied, "I know, honey. I know." 

Oh, I wish you could take pictures of dreams. I want to hold onto that image. It was so clear, so real. 

And once I woke, so gone.

I miss you two so much.

Love you even more.

Love,
Mama 

“I think we dream so we don’t have to be apart for so long.
If we’re in each other’s dreams, we can be together all the time.”

- A. A. Milne

Trying to Learn to Dance...

Dear Aaron,

As I drove home today, I was reminded that four months ago today I got a text from my sister. I was approaching the cemetery when it came through and I listened as I sat in the car near your grave.  In it, she said to "listen and process when you have space," or something like that. The recording was Gramma's nurse saying that she had decompensated quickly, was moved to the ICU and on maximum support. 

I knew, I just knew...

She held on for more than 12 more hours. I got to talk to her, say goodby and tell her to give you a hug from me, and be with you until I get there.

That night was so dark. It was cold. It was December. 

Today was bright and sunny. In fact, when I reached your spot, the sun was still relatively high in the sky in spite of it being 7 pm. I touched your angel that hangs from my mirror and thought of you two. I told her how much it hurts, and I could hear her whisper, "I know, I know." 

I miss you two so much, so very much. 

I was listening to a podcast today about "Bravely Being With Grief" by Robyn Gobbel, mostly for some of my work with clients, but it also hit home for me. I was reminded (again) that grief really never goes away. In her podcast, she talked about it just going somewhere else in the body and then resurfacing, sometimes completely catching you off guard. 

I think that's what happened today.  

Your spot is so beautiful. They're beginning to mow again with the spring warming up. Last year this time, I had to take everything down on Tuesdays because none of it was permanent yet. This year, I remove the butterflies and then put them back on Wednesdays, but your stone stays. And the flowers in your vase stay. And your smile stays.

I'm working on your garden here now. I'm hoping to get seeds planted (inside in pots) tomorrow, and your temporary stone cleaned and resealed. In a few more weeks, I'll start putting flowers in the ground. 

I'm trying, Aaron. I'm trying, Mama.

I guess if I didn't love you, I wouldn't miss you and it wouldn't hurt.

But I do, and it does.

Miss you both so much.

Love,
Me

 “You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp.”

— Anne Lamott 

Third General Conference Since You Left...

Dear Aaron,

Hey kiddo, today is General Conference, and it's been a bit hard.

You know, you've been gone now for almost 16 months, 67 weeks (yeah, my brain still counts weeks). 

But this is only the 3rd Conference since then, and I found myself wanting to go check on you, make sure we got breathing treatments done, have your meds ready for the intermediate hymns, or check to see if you're awake and want to come in. Even after all this time, muscle memory activates.

You loved Conference, especially the music. There was a talk today on the sanctity of life, on protecting the unborn, and the blessing that this life is. I was reminded of the several times we watched from the PICU, and how one time as we were in there, the choir sang, "My life is a gift, my life has a plan..."

It was a gift, it had a plan. Father knew your days, they were numbered from the beginning and you were promised that you would have all the days you needed. And you did. And I still wanted more. I'm trying to be strong, Aaron, but it hurts.  

The weather is getting warmer and I'm finding energy again. Today Joseph and Andrew and I got started on a garden where we'll put the temporary stone that my friend made. It's not much to look at yet. I mean, this is Utah. It will still be at least a few more weeks before I can reliably plant things, but it's getting ready. Now I have to figure out what to put in there, but at least we got the fence in to keep the dogs out. 

But I also find myself numbing out. I watch TV shows or read books in an effort to avoid thinking, avoid feeling. 

I keep saying it: Grief is weird and ugly and just hurts.

But grief is also love, love with nowhere else to go. 

And because I love you, I won't numb myself for too long, just long enough to gather strength again to move forward, because you deserve that. You were so strong, so valiant.

I can't be anything less. 

Love you, kiddo. Miss you.

Love,
Mama

“life ends, but love is eternal.”

― David Kessler

You Mattered, You Still Matter

Dear Aaron,

Tomorrow is March 31, the last day of Trisomy Awareness month. 

I don't know what else to say. I don't know what people don't know. Maybe because I've been living this life so long that I don't remember a different one.

Maybe because what was so hard and so challenging just became our everyday life, our "new normal", just "what we did." 

Maybe that's part of why it's so hard without you. 

Because while taking care of you, learning, knowing, trying, always being on alert was hard mentally and physically, it is NOTHING compared to the emotional pain of being without you. 

I miss your smile, your laugh, your goofy nature. I miss your resilience. I miss your trusting spirit, the eyes that said, "This IV is so hard, but as long as you're there holding my hand, Mom, I know we'll get through it."

And now I guess I get to "get through" not having you here with me.

But somehow, I don't think you're really gone from me. I see your footprints in my life, your handprints on my heart. 

And maybe that's what I need to say at the end of this month. 

Your life mattered, it still matters. You are an influence for good in this world. 

The world is richer for you having been here, and simultaneously poorer for the loss of you.

I miss you.

I love you.

Love, 
Mama

“Sometimes, only one person is missing, and the whole world seems depopulated.”

— Alphonse de Lamartine

I Was Seen

Dear Aaron,

I've been wondering how I appear to others. 

I suspect that most think I'm good. I'm "over it." I've moved on.

I go to work. I volunteer. I laugh at my grandkids and have fun with my kids. It's getting warmer, days longer. I write Michael, I clean up and decorate your grave. 

I talk about you, laugh at memories of your antics, tell medical staff what you taught me.

But that's a mask.

Deep inside, or maybe not so deep, I ache.

I cry.

I miss you So. MUCH!!

And then, after I'd been thinking about this, on Monday a colleague stopped in my office to tell me about a dream of hers, about being at the hospital and some things she saw, and she saw me and I was so broken, so grief stricken...

She saw me, me behind the mask. 

The mask I wear to protect others, and maybe even myself. 

I've gotten so good at compartmentalizing over the last 15 years, but you can't keep things in boxes forever. 

And she saw me.

Oh, Aaron. Is that part of why you were so real, so happy, so accepting? I don't think you ever wore a mask. Oh baby...

I love you.

I miss you.

Love,
Mama 

"It's so curious: one can resist tears and 'behave' very well in the hardest hours of grief.
But then someone makes you a friendly sign behind a window,
or one notices that a flower that was in bud only yesterday has suddenly blossomed,
or a letter slips from a drawer...
and everything collapses."

Colette Gauthier-Villars

Spring Utah Style

Springtime in Utah, 1 Day Apart

Dear Aaron,

Utah weather is weird. 

Tuesday was stormy, wintery, can't see the mountains that are almost on my doorstep. Your grave was covered with a white blanket, the same spot that had tiny green spears of grass the day before. 

Wednesday dawned with a brilliant blue sky that was so bright it almost hurt the eyes, and the mountains in all their glory with glowing white peaks against it. The air so clear I could see the mountains on the other side of the valley as well. And your white blanket was gone.

And then yesterday and today were just sorta in between. A high layer of clouds that mostly blocked the blue, but not quite. Mountaintops touching the sky and in some places piercing the soft underlayer. 

Tomorrow is supposed to be stormy, wintery, again but next week we hit the mid-70's, briefly and then back to winter by the weekend.  

Somehow, this feels a lot like grief. I was at Primary's main campus last week and will be at the Lehi campus this week, and I was fine and expect to be again. But yesterday I cried on the way home from work, and today I sobbed. 

Sometimes I can see clearly, peacefully, and even with joy and gratitude for you. And sometimes I feel numb. Or in a fog. Or painfully, achingly lost in a whiteout. 

And yet, I carry you, and Gramma, with me. I wear the bracelet she gave me after you left every day on my right wrist. Every day except yesterday. About mid-day, I realized something felt off and when I looked at my arm, it was missing. My heart sank and I tried to remember if maybe I had forgotten to put it on. That memory wouldn't come, but I also knew that I keep it with my watch, my beaded bracelets, my stone heart all in the same place and put them on (and the heart in my pocket) at the same time. Sometimes it feels a little loose and I worried that it might have somehow fallen off and I didn't realize it. That was honestly my biggest worry. I have no idea how I would replace it. 

But then, on the way home, my watch and beaded bracelets felt a little tight. As I reached down to adjust them, I felt metal. Yeah, I put it on my left wrist instead of my right. Oh, the relief I felt. Not only is it a tie to you, but also to Gramma. The possibility of the loss made my heart ache, and finding it filled my soul. At the same time, I wondered how I could have been so oblivious for so many hours through the day. 

Aaron, I cling to the things, the objects, that remind me of you, and of Gramma. I miss you both so dearly.

It's been 65 weeks tonight since I last told you goodnight, 15 months on Sunday. As I drove home from the cemetery today, I thought about how I told people you were gone. "At 12:20 this morning, his wings were ready. My heart was not." 

It's still not.

Love, 
Mama

"Give sorrow words; the grief that does not speak knits up the o’er wrought heart and bids it break." 

-William Shakespeare, Macbeth 

From Nurse Holli

This was written by Holli, Aaron's main school nurse for seven years. She became a second mother to him and a dear friend to me. I could not have done half of what I did without her support.

Trisomy is a fight for so many with different chromosomal numbers, and situations.  One with 18 was for a special friend of mine. I treasured each day with him. Everyday was a blessing with him and the others that fight the fight having this disease. My Aaron was a special joy each day until it was not! He needed help to fight the changes going on in his body using assistance from people and  machines toward the joyful end of his life.  But even in pain he smiled and tried to smile to help someone else have joy. He brought me many days of joy, laughter and also showed me that no matter your circumstances you can always learn even without being able to speak and also be cheerful. 😊

Knowing his example of this disorder and learning from it and that he was a person with personality helps me to be a more humble and thankful for those I interact with in my life. It was a pleasure to learn and know this beautiful child each day. ❤️ 

You always think you could have done more. That's why you need a friend — to tell you you did all you could.

~Robert Brault

Trisomy 18

Aaron's 4 Seasons prints behind me.

Dear Aaron,

I've been trying to do my own grief work and found some notes from a lecture I attended. And while what I wrote rings true (oh so very true!) I believe it also misses out on the growth, the love, the strength you brought to me and to our family. (I'll write about those ideas another time.)

I remember when we first learned, or maybe when I first learned about Trisomy 18. I've written before about that 20 week ultrasound where we learned there were a LOT of things going on. I went home and immediately started researching the different findings. Okay, okay, okay... But then I put them all into the search engine at once and it spit out: Trisomy 18. I knew in my heart that day, I knew and oh, how it hurt!!

But time passed (often with a lot of tears) and then you arrived mid-June. Tears continued, especially until we got you home on June 29th, but there were glimpses of joy, of smiles. Like how once they clipped your tied tongue, the binkie you had sucked on so well was now in the way and you would "pop" it out (literally) so you could play with your tongue and your cleft. 

Trisomy 18 was a gift I never realized I needed. I'm a very different person than I was 15 years ago, more forgiving, more understanding, more open, less quick to judge (okay, about most things). Our family is closer, more resilient and stronger too. I have learned to lean in and feel my feelings, and be okay with them even when they're hard.  

I went by your grave yesterday and reached out to touch you in the only way I can now.  Someone else has been coming by as well, leaving visitation stones. I don't know who, but I'm grateful you have visitors. My facebook memories have so many pictures of family and friends wearing blue last year, more than any other year, but I don't think there will be many today. Most people have moved on, and I guess that's okay. You're not forgotten, but the daily fabric of their lives really didn't change much with your passing. 

Mine did, both with your. birth and with your death. I fundamentally changed, and change is good, but it also really hurts. I have to grieve fully in order to live fully.

And for you, Aaron, I want to live fully, like you did, being present in the moment, finding joy in the small things, loving freely.

You have taught my soul.

Love,
Mama 

"Grief and resilience live together." 

– Michelle Obama

Best Boy Band

Dear Aaron,

It's your Jonny's birthday. And he's got two little ones of his own now. 

I spent Thursday at BYU watching him and Deborah dance, and being with Linnaea and Barrett, and Elend and Sterling. Somehow, those four kids help heal my heart a little. And watching how your siblings have grown and are such amazing individuals does as well.

Jonny and Deborah love those high school kids so much. They pour their hearts into those teams. And I got to sit back and watch. A truly amazing experience. 

Friday I spent here at home with Linnaea and Barrett. There's a tummy bug going around and it was Barrett's turn. He was so miserable, and Linnaea was still trying to get over it. We binge watched "Bluey" and just rested. Another balm for my soul. 

And then today, today I took your pulse/ox over to a neighbor who is needing oxygen, hopefully only for a short time, but also had no real way of tracking it while sleeping. I'm so grateful for the things you taught me, for the training, and for the ability to use that to bless other people's lives now that you don't need it anymore. I went by to see you after and as I told you about it, I started crying again.

Oh, Aaron, I miss you so much!  

I did my nails today and chose blue and butterflies because Trisomy 18 day is on Tuesday.  I'll be wearing blue for you that day. 

You know, sometimes I really am okay with you being gone, with Gramma being gone. Honestly. And then it seems that acceptance and peace is followed a short time later with gut-wrenching pain again. 

I heard something the other day that really hit hard: 

When I die, bury me in comfortable clothes and make sure my shoes are tied tight. I have a long overdue playdate with a child.

I watch your niece and nephews play and it simultaneously fills and yet breaks my heart.  What a blessing they are, what a blessing your siblings are, and what a blessing you are. 

Oh, Aaron...

Love,
Mama

"A brother's love is a blessing. Forever will it remain."

- Lilo & Stitch  

Trisomy 13

Dear Aaron,

Tomorrow is the 13th, March 13th, Trisomy 13 day. It's colors are pink, green and yellow. It's also your nine month birthday, only three more months until you're 15. 

The first child I ever met with Trisomy was Arianna, and she has T13. There she was, bouncing away in her wheelchair at the movies and I asked her dad about the wheelchair (it was cool!) and then about her. When Matt said she had "something called Trisomy 13" I about freaked out! You were only a few months old and I had no idea what life would look like. I told him you had T18 and he was excited and got his wife. They were such an incredible support throughout your lifetime, and even after. Julianna and Arianna came to your funeral and as your casket was wheeled out, Ariana started laughing. I think she knew something she wasn't telling us. 

Since that day 14 years ago, I've met so many more kids (and a few adults) with T13 and T18, but Arianna was the first.

She's almost 19 now! Her birthday is the week after yours, which makes it easy to remember how old she is. 

Trisomy 13 is even more rare and more challenging that Trisomy 18, although they're often lumped together by that awful label "Incompatible with Life." I think they should be labeled "Incompatible with Ignorance" or as we call it "Compatible with Joy" and love and laughter and strength.

You are all of those, and so are your friends. 

I like to imagine you kids all in heaven together, banding with each other, strengthening those here and those who will still come. 

And those of us privileged to be your family. Because it was and is a privilege to have been able to know you and care for you. 

You, my son, are amazing.

I love you.

Love,
Mama

“We didn’t realize we were making memories, we just knew we were having fun.”

- A. A. Milne 

1000 Days of Love, Part 2

Dear Aaron,

Twelve years ago we celebrated 1000 days of your life. You've now been gone 444, almost half of that. I remember that day. I finally was believing you would live, could live.

I'm still not sure how to understand that you're gone. 

On your 444th day of life, I felt joyful, I felt blessed, almost ecstatic. 

On your 444th day of your new life now, the life in heaven where I am not, I still feel blessed, blessed to having had you here, but not joyful. Not really.

We had family over tonight to celebrate David's and Sarah's and Jonny's birthdays. Barrett is now walking pretty steady, Elend and Linnaea love playing with Legos, and Sterling does an amazing army crawl. Do you watch them, sit with us? Are you here? I think I've felt you a few times recently.

This week is Ballroom Nationals.  You went a few times. You loved the music, the atmosphere. You had some pretty amazing dance moves. You definitely felt the beat. 

This year I'll head down on Thursday and Friday. I really hope the high school team makes Division II. If they do, I'll get to see them, and Jonny put a part in honoring you. There's a heartbeat during part of the standard medley that fades away... He told the kids a couple weeks ago the significance of that. If they are in Division III, I'll see it at concert, but I'd really like to experience it at Nationals. I guess we'll just have to see...

(Make sure the sound is on)

It's getting light earlier and staying light later. We changed times today, Aaron. That was always kinda rough on you, figuring out ways to adjust your meds, especially your seizure meds, to new times. But that's not a problem anymore. You don't need meds. You don't need a vent, a wheelchair, a computer to talk with. You're perfect now. I just wish I could still hold you.

As I drove to church today, I realized another place you made a difference. There were ramps to get into the building with a wheelchair, but it was nearly impossible to open the door while also pushing the wheelchair. Most of the time I had someone with us, but I knew that I couldn't always count on that, and you aren't the only person who needed to use that door. So after talking with leadership several years back, they got a handicap button installed so anyone could open it. 

You are a game changer, a rule breaker, a legend in the making. Your handprints are everywhere in this world.

You are my hero.

Love,
Mama

"Heroes get remembered, but legends never die."

Babe Ruth

Trisomy Day 6

Dear Aaron,

More pictures show up each day. 

2018 was a good year for you. Very few hospitalizations, lots of school, lots of fun. 

You loved being outside, going places, learning, growing.

Working hard.

And I bet you still do.

Miss you, kiddo.

Love,
Mama

Wonderfully the soul slips from its burden

At the end of the body's life...

~Cave Outlaw