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 

Family Birthdays

Dear Aaron,

Tomorrow is David's birthday and we start another round of sibling birthdays without you. When we add in the sibling spouses and your niece and nephews, well, they come pretty fast and furious. 

I mean, Barrett's 1st birthday was in January and Kensey's back in December after you passed, so I guess we already started.

But tomorrow is David's, and Sarah's on Friday and then Jonny next week. Elend and Sterling follow not too far after that. 

And on and on...

Somehow time keeps moving on, but I feel torn. I'm stuck back on December 23rd, 2023 when you left, and still have to move forward, mostly because there really isn't any other option. But I still don't understand, not really. 

I look back through pictures and see your smile, see you grow. You loved science and were fascinated by the gecko. You found riding on the horse exhilarating. You loved going to David's soccer games, and I think you may have been the only warm one there. 

You lived a full life, my son. You did more, experienced more challenges, and found more joy in your 13 1/2 years than I think most do in 80-plus. You seemed to know that you had to make the most of every minute. 

That extra chromosome may have made your body frail, but I think it strengthened your spirit and allowed it to shine through. 

I love you, Aaron. I love you so much. 

Miss you, too.

Love,
Mama

Time is the school in which we learn,

Time is the fire in which we burn.

~Delmore Schwartz 

March 2nd Through the Years

Dear Aaron,

It's March 2nd, 2nd day of Trisomy month.

Through the years...

Dinner time

You thought "Anger" was so funny. Honestly,
I don't think anger was ever an
emotion you experienced.

Showing up for a same-day surgery
that ultimately wasn't same day.

Your van meant freedom, freedom to go
freedom to see, freedom to experience.

 My angel boy, you are amazing. As hard as it is to learn to live without you, I cannot imagine never having known you, loved you, being taught by you. Your life was a true gift to me and to all who knew you.

Love,
Mama

life is a graceful soaring

death a graceful landing

~Terri Guillemets 

March 1st - Trisomy Month

Dear Aaron, 

It's March 1st, the beginning of trisomy month. 

Somehow, somehow, I feel like I need to contribute, and yet it still hurts so badly. 

I see your smiling face, that "hope" bib that now hangs in my room. 

I felt you this week, next to me, as I drove to the hospital for my meeting, the hospital you never saw yet left your fingerprints all over.

It's been open a year now but it doesn't feel like home the way the main campus does. 

And yet, even though you're gone, there are so many here, many who would not be here if not for you and your tenacity, and your spunk, and your crazy wonderful sense of humor. 

So I feel like I'm letting them down when I don't contribute. There's so much happening in politics and I just don't have the bandwidth to advocate right now. I'm finding I pull back, try to ground myself where I am, just to keep from falling apart.

And other times, it doesn't hurt quite so much, or at least so sharply. I see you and Gramma everywhere: your bib, my watchband, the butterflies I wear, my bracelet, the blanket Gramma embroidered for me, the framed quote she gave me, the heart jewelry box that lights up with "Always Remember I Love you" and the woman in prayer she gave me many, many years ago. And so many other mementos, reminders that I am loved and richly blessed. 

I miss you, Aaron, and I miss Gramma. I am so, so grateful for your love, your teachings, and yes, your wonderful quirky smile and sense of humor. You found joy in everything and everyone. Your love was tangible, uplifting, refining. And I guess that's part of why it hurts so much that you're not here with us now.  

As I drove home this week, the setting sun turned the mountain snow pink. Your grave is decorated for St Patrick's day. Shamrocks, "gold" coins, green flowers and a little garden gnome (I couldn't find a leprechaun). You are my very own good luck charm. May I remember to smile through the tears and find strength.

I love you.

Love,
Mama

“I know for certain that we never lose the people we love, even to death. They continue to participate in every act, thought, and decision we make. Their love leaves an indelible imprint in our memories.”

Leo Buscaglia

I Miss You, I Miss Me

Dear Aaron,

It's been a little while since I wrote. I'm not sure why; I mean, it's certainly not because I haven't been thinking of you, missing you...

That's just part of me now, I think in some way in every minute, in every fiber of my being.

It's getting light earlier, and staying light later. The last few nights as I drive by to check on you, the lights on your grave are just coming on. The twilight deepens, the orange of evening lights up the dark mountains on the west side of the valley, and there's a beautiful bright star just to the west of you. My guess it is really Venus, but hey, to my uneducated eye, it's a bright, shiny, small pinprick of light.

Maybe kinda like you. I'm surrounded by memories of you, mementos of your life, your love. 

The longer days feel better, more comforting, but I cried on the way home from work yesterday for the first time in a while.  

I talked to Michael today. Do you also hang out with him? Are you serving alongside of him? It's pretty quiet here now. Except Sunday evenings, there's not much happening in the house. The fridge stays full for a long time and food has taken over your spot on the lower left side of the fridge. But I can still see your things there in my mind.

I go grocery shopping about once a week, but there's not much in my basket anymore. It's strange, this new life. Adjusting to our "new normal" with you was a whole lot more intense, time consuming, energy demanding. But I think this one challenges my mind more, twists my heart. 

I miss your laughter, your smiles, your silliness.

I miss the memories we won't make anymore.

I miss the me I was before.

I miss you.

Love,
Mom 

Sunrise, sunset

Swiftly fly the years

One season following another

Laden with happiness and tears

Linnaea

Dear Aaron,

Today Linnaea was looking at pictures of you on my screensaver 

She asked, "Can Aaron talk now?"

I smiled and said, "yes, and run and laugh and dance and play and do so many things!" 

Then, "Where is he?"

"He's in Heaven."

"Still??" 

"Yes, still" and the knife in my heart twisted a little. 

Oh, my funny Valentine, I miss you.  

Sometimes Heaven feels close, and other times so very far away.

Love,
Mom  

“You’re everywhere except right here, and it hurts.”

— Rupi Kaur

Diagnosis Day, Two Months, Forever To Go

Dear Aaron,

Fifteen years ago today I went for the "routine" ultrasound that wasn't. 

I didn't really think too much about it beyond finding out if you were a boy or a girl. Daddy met Michael and I there. Michael was only 3. He was my sidekick, always with me since the big kids were in school. When the doctor started talking (for what it's worth, when the doctor comes into the ultrasound, it's never a good thing), I started crying and really couldn't stop. 

Michael told Daddy to make them stop hurting me, and we tried to explain that the doctor wasn't hurting me, but he just couldn't understand.  

Our next appointment was five days away, which felt like an eternity. 

In some ways, that day seems like an eternity ago, but my body still remembers, still hurts. Today feels heavy, dark, hard.

And it's been two months since Gramma came to join you. Did you come get her? Did you hold her hand as her spirit slipped away from her body, from the hands that were holding her earthly hands? 

While we were in Arizona, I noticed a book on the table near where she sat. I have wondered if she read it. I mean, she found out a few weeks before that she was permanently losing her eyesight and that was so hard for her. I remember her saying on more than one occasion that her eyesight was the one sense she was terrified of losing. I'm sure it was for a variety of reasons, but I know not being able to read was a big part of that.  

Gramma read voraciously. She passed that on. I don't remember not being able to read. I learned before I went to kindergarten. As she read everything, so did I. Cereal boxes in the morning, magazines in offices, even JAMA at the pediatricians. The Reader's Digest and church magazines were staples in our home, and library cards were prized. 

So when I saw the book on the table, I wanted to read it. And those library cards? Well, I still have one. I read it last week, a bittersweet experience, the last book she will recommend to me. Mom came of age during the Vietnam era. Papa was in country. She married an Air Force officer. The book was about women nurses over there. I could almost feel her spirit as I read. Oh, I hope she did get to read it. It was the kind of book that spoke to her, and maybe a bit of her. 

As I finished reading it, it was a little like saying good-by all over again.

Fifteen years since your diagnosis, two months since Gramma slipped away, and what feels like forever until I hold you both again.

The full moon rose above Box Elder Peak tonight, seemingly caught in the tree branches, watching over your grave. Did you see it? Did you see me checking on you? Did you feel the cold wind rustling your butterflies?

I love you, little man.

I miss you so much.

Love,
Mama

“Moreover, we can’t fully appreciate joyful reunions later without tearful separations now.”

Russell M. Nelson

Waves

Dear Aaron,

It comes and it goes. Like the waves on the beach.

Last week I was pretty good. Earlier this week I was okay.

The last few days... well... it's hard.

I don't like February.

It's dark, cold, often dreary. 15 years ago on Tuesday, my world rocked when I went for the "routine" ultrasound. It was anything but routine.

Fourteen years ago you were admitted for your first "scary" pneumonia. You kick that in the butt! Once we were settled, I started asking how long they thought we'd be there and no one would answer. When we discharged six days later, everyone was astounded! That's when I was told that they had expected several weeks, if you managed to survive. 

Then all week, Facebook has been reminding me of February 2022.  Sepsis, DIC, neurostorming. Fragile enough to prompt a move to the middle of the ICU and your own one-to-one nurse for days on end. On February 6, 2022, you were given a priesthood blessing and this is what I wrote the next day:

Yesterday I had the chance to take the sacrament and then the Elders gave him a priesthood blessing. It was beautiful, and I have a hard time remembering what was said. He was blessed with strength, and his family too, and that his body would be strong. But I also got the impression at that time that this was going to be rough and long, and frankly, hard.

I had no idea how long or rough that stay was going to be. Or how much more you would be called on to endure over the next 22 months. 

Or how my heart would break, shatter, when yours stopped.  

And then Gramma. I wanted so badly to call her yesterday, to talk to her and hear her voice. It wasn't even anything "special" or significant. 

February may have the shortest number of days, but in some ways, it is the longest month.

My heart hurts.

I toss on waves and they overwhelm me. 

I know they will ease again; they always do.

But right now, right now, it just hurts.

Love,
Mama 

“One more day

One more time

One more sunset, maybe I’d be satisfied

But then again

I know what it would do

Leave me wishing still, for one more day with you.”

— Diamond Rio 

I Carry You

Dear Aaron,

For nine months I carried you inside of me.

For 13 1/2 years (and ten days), I carried you with me.

For 58 weeks now, I carry you, unseen, in my heart, my soul, the very marrow of my bones.

In a very literal sense, your cells still reside in my body and likely always will. 

But I carry you in other ways, too. 

I made a watch band this past week using the beads I made your trach chains from. I use your lunchbox every day at work. I wear the bracelet Gramma gave me after you passed, which also now symbolizes my life without her as well. Your prints hang in one office, your toys are in both. 

I always wear butterflies and your name is on my key ring. Your pictures hang on my walls and keepsakes are in the curio cabinet. Your minion rock is on my desk.

There's a butterfly on the back of my car and an angel crystal hanging from the rearview mirror. Your "hope" bib hangs on the shelf in my room next to the ribbons from your funeral spray. My watch face is yellow roses and a butterfly for you and Gramma as is my lockscreen. 

You are everywhere with me.  

I see your smiles pop up on my computer screen; I miss the sound of your laughter. 

I carry you, and your spirit carries me.

You carry me through the days and nights, through the anguish and the pain, and through the smiles that come in spite of my tears. 

I'm not sure how it has been 58 weeks already, and yet only 58 weeks. It seems like forever since we said goodbye, and yet it doesn't. 

I spent yesterday working on a ceramic nativity from the same mold as one of Gramma's that I've always loved. It was calming and introspective. I miss the two of you so much, and I also feel your strength. You lift me and teach me and make me more than I could ever have been without you. 

You carry me; I carry you.

Forever and always.

Love you so much, little man.

Love,
Mama

"We do not have to rely on memories to recapture the spirit of those we have loved and lost – they live within our souls in some perfect sanctuary which even death cannot destroy."

- Nan Witcomb