You Left Your Mark

Dear Aaron,

You left your mark: on me, on the new hospital, and on the world.

As I was looking for Sharpies for present wrapping, I grabbed the only red one I could find. And then I noticed what was stamped on it:

I LEFT MY MARK

Lehi Topping Off

June 2021

And it made me smile, a small smile, because you did. You are the reason that I advocated for medical gasses in the clinic spaces. Initially they felt that having oxygen tanks on hand, like they do in the Salt Lake clinics, was enough. And in a perfect world, it would be. But in a perfect world, children wouldn't be on oxygen anyway. 

I told them how I calculated oxygen every time we went out. I always allowed for longer than expected wait times, and then added more on, and always, always took an extra tank plus the emergency one that never left the car. If we ended up using any of that one, it was replaced before even going back into the house. But even with all those safeguards in place, at one point the doctor was a couple of hours behind so I asked for a tank. And it took 45 minutes to find and bring one to us, which meant that I was turning you down below what was optimal just to eek out as long as we could. 

I suggested that the additional worry and stress was not something that medical parents' brains needed, or their children's bodies. And when they put lines in the building, medical gasses were present. 

Lately, there have been other remembrances. When I bought the lantern almost two weeks ago, there was some confusion at the register. The woman who was helping me said she'd make sure it all got straightened out and asked for the email it should be under. As I gave it to her, she slowed while writing it down, and pointedly kept her eyes on the paper. Kinda slowly, she said, "Rebekah Peterson, there's a Rebekah Peterson in the special needs world... Do you know her?" and she looked up. I said, "that is me" and I felt so seen. 

The next week at Walmart, I saw one of the practitioners that took care of you over and over and over in the PICU. We had a good visit. And I was reminded again that your life, your days, were known by Father, and you lived every one of them. And it still hurts that you're gone.

Today, Daddy and I saw Christmas Carol for our anniversary. Eleven years ago today, on our 25th anniversary, we saw it as well. Later that night you were Lifeflighted from the AF Hospital to Primary's. When you were still critical on Christmas and I told a PICU doc that your siblings had unanimously voted to put Christmas off until you were home, he was surprised. I gently told him that one day Tiny Tim's crutch would be by the fireplace without an owner and we didn't want to face that until we had to. He just nodded. 

And now it does. Figuratively, I mean. All your equipment has moved on to help others. You don't need it anymore and they do. But Scout still sits in your room, and pictures are around. I tuck letters and memories from friends and family into your stocking. And I hold you close in my heart. 

I've heard that time runs different in heaven: a day there equaling a 1000 years here. So does that mean by the time you look around for me, I'll be there? I hope so. 

Two years ago, tonight into tomorrow. 

I miss you. 

Love,
Mama

“Death ends a life, not a relationship. All the love you created is still there. All the memories are still there. You live on- in the hearts of everyone you have touched and nurtured while you were here."

Tuesdays with Morrie Mitch Albom

Christmas, Scout, and Memories

Dear Aaron,

"I'm feeling happy! Aaron, show me your biggest smile!"

"I love you Aaron!"

Sitting in the front room, your old room, with Scout next to me. The last socks you wore still on his feet. Candles flicker, some in your memory cabinet, some on the piano, and some by your nativity scene and picture. The Christmas tree rounds out the soft illumination.

In the other room, I see more candles, and the snow globe scene of Santa with the Christ Child; my gift to myself from my parents this year, because that was one of Gramma's favorite images.

I squeeze Scout's paw, and he responds. Tears in my eyes, and a small smile on my lips. "Oh, I"m feeling sad. Will you give me a hug? Thanks!" I don't know if it's reality or my imagination, but he seems to still smell a little like you. I mean, he was with you for every hospital admit, and in your bed every night. You wore one out, and we buried that one with you. 

I was filling out some paperwork for a weekly evaluation on Sunday and it hit me again how hard last week was, and the next week will be, too. 

Last week was two years since our last 911 call (12/9), last admit (12/10 - you know it takes several hours to actually be admitted), last time I saw you with your eyes wide open and your big smile, even a chuckle (12/13). It has been one year since Gramma's last admit (12/7), a year since I last spoke to her here on this side of the veil (12/10), and a year since she came to be where you are (12/11). 

It's one more week until the last night I tucked you in (12/22) and you woke up in heaven (12/23). During the time between your last smile and leaving, I kept vigil, watching for improvement, hoping and expecting it. And I guess, in the eternal scheme of things, you did improve, just not the way I expected. Gramma's services were a year ago on Sunday (12/21) and yours were two years ago just over a week later (12/30). Somehow I wonder how I am still standing.

But in between, woven within the fabric of these dates, are Christmas celebrations, music, decorations. I remember the magic of Christmas as a child, and recognize that it was Mom. I wrap presents and recall working at the gift wrap booth in the mall with my friends. Dad helping organize the efforts and making sure that everyone working was actually capable of wrapping well. (We teens were the best, some of the adults didn't do as well.) 

I remember Christmas carols, and cinnamon roll Christmas trees, and chocolate before breakfast on Christmas morning and thinking the clock would never reach 6:00.  

Gramma loved Christmas, the lights, the stories, the celebrations. She loved the magic, Santa, and most of all, her Savior. She collected nativities, and so do I. The one she and Grampa made for my Grandma  sits on the piano and others are scattered through the house. 

I don't really think I felt much last year. It was my first without you (I still don't count 2023; you were here until 2 days before), but I was also wrapped up in losing Gramma. But this year, this year is different. I see the joy and the wonder on the grandchildren's faces, and I miss your quirky smile. I hear the carols, and I can almost hear my mom's voice as I sing. I am so grateful for Christmas, and it hurts so badly at the same time. 

I miss you, Aaron. It's starting to sink in that this is the way it's just going to be. Last year things were still pretty new. Not so much anymore. Your grave is decorated with a little tree, lights in your flowers, a wooden reindeer, and butterflies

I wish I was decorating your room instead. 

Love,
Mama

"Like snowflakes, my Christmas memories gather and dance —
each beautiful, unique, and gone too soon."

- Deborah Whipp  

Light and Love, and Loss

Dear Aaron, Dear Mama,

Mama, a year ago today you went to the hospital. I seem to remember you took yourself there and when asked why, you said you needed to know if you could do it on your own, and you did. They admitted you for a "tune-up." I mean, you really weren't too bad off, and then a couple days later you were done. 

Tricia called on the 10th and I knew.... 

You were gone the next day.

The last thing I said to you was, "I love you. Please find Aaron and hold him for me until I get there." I was told you smiled...

And Aaron, the year before, 2023, the nurse woke me the morning of the 9th because your heart rate was kinda high. I thought your albuterol treatment would have caused it (he was a relatively new nurse) but when he said it was 140, I knew that wasn't the case. We watched and I babied you all day, but by nighttime it was obvious that we needed more help. Your official admit date was also December 10. Your last one... 

And your last "real" smile was just three days later on your 6 month birthday, right before your body essentially crashed. 

Your last week here at home was pretty amazing! Smiles, laughter, playing. Was that also a rally? Like Gramma with Thanksgiving? Were those final happy moments your gift to me, to help see me through so many, many years without you? 

It's only been two so far and it seems so long, and yet, the grief still hits almost as sharp as initially. Well, maybe not quite. Back then I couldn't even wrap my brain around it. I would hear your machines, the beeps. I tried to go to your room on multiple occasions to check or give you meds. Your things still smelled like you.

Not anymore. 

I don't even know what to do to mark your angelversary. Or Gramma's. 

I've asked people to send me stories, or things you taught them,  or happy actions they do in your name. It's interesting, most of them have come from other angel moms, and almost all the rest from special needs moms. A few have come from others, including a children's librarian who loved your big kids when they were tiny. 

But it seems that they are the ones who understand, who know the fear of a child being forgotten. Maybe others are afraid of making me hurt. I don't think they understand that while I may cry, the pain of not remembering you is much more. And honestly, I'm going to cry anyway.

I've got two more weeks of work before the holiday break. I'll get through it, and it will go well. But I don't think I'll be scheduling any extra sessions. I just don't have it in me. And I'm learning that it's okay to slow down a little.

Oh Aaron, Mama, I miss you! I'm grateful for the lights, for the music, for the sights, the innocent wonder in a small child's eyes. I'm glad there's joy this month, because there's also (almost) unbearable pain. I went to Avanlee's Messiah concert. It was beautiful and brought back so many memories of singing in high school. But somehow, during the Hallelujah chorus, I was reduced to sobs. There were some quietly singing with the choir from the congregation, and I have to wonder if there weren't many more that we couldn't see singing as well. Were the two of you there? Was it your voices that I heard? 

Maybe....

Love,
Mama/Becky

"Life is a repeated shattering and gluing back together of the heart."

Terry Guillemets 

Gratitude and Grief, Love and Loss

Dear Aaron, 

Thanksgiving yesterday, my first here at home without you.

Last year Gramma asked everyone to come, so we did. When I walked in, I didn't recognize her. She had deteriorated so much. But she said she was feeling so much better; she planned to see this year, too.  One year ago today. She was gone not even two weeks later. 

I worked to get Christmas things up earlier this year. Today was just my poinsettia arrangements and the Treepee. I've stayed busy, moving, distracting myself. And yesterday was chaotic, noisy, and amazing. Matthew & Kensey, Michael and you were missing, but everyone else was here, and here most of the day. No time to think.

But in the quiet moments, I find myself remembering. Grateful for you, and missing you terribly. 

Here we are again.

Friday into Saturday.  

101 times since that night, your last night here, your first day in heaven. 

Tomorrow I will go to your grave and decorate it for Christmas. I can't tell you how much I wish I was still choosing Christmas presents for you, juggling medication and nursing schedules. How strange it sometimes still seems to not be, and how painful the realization that those don't seem quite real anymore. They fade, almost like a dream. And then I'm hit with the gut punch agin. 

I miss you, and I miss Gramma.

I don't even have words for it.

A friend who also recently lost her mother put this up:

I was reasonably prepared for you to die. 

I was not prepared for you to be gone.

 And I think that's it. You dying was painful beyond words I have. Excruciating, gut wrenching, heart breaking to the point that every breath physically hurt. But there were things to do and tasks to perform, so amid the tears (and wails and gasping sobs), I did them. 

And now, I'm left with "gone." And that won't change. 

So I'm limping forward, wearing my mask, and even doing pretty well most of the time.

But Friday into Saturday . . . 

November into December . . .   

Thanksgiving into Christmas . . . . . . . 

I love you. I miss you.

Love,
Mama

“I'm just jealous of the angels

Around the throne tonight”

Donna Taggart 

 

Holiday Time

Dear Aaron,

This morning as I left for work, the bright morning sun shone in my eyes. Shortly after, dark, low clouds rolled in and my headlights turned on. To the northeast, blue sky behind the mountains. To the south dark gray hiding the mountains that were right there. Kinda felt like a metaphor for my life. 

Bright moments of joy and clarity, and then unexpected shadows, pain, sorrow. And still, work waited for me so I continued on. And stuck my grief in a box until the end of the day (mostly). 

I've got most of Christmas put up. Every year when we take it down, it seems there's an ornament that's missed. No matter how hard I try, the next year I find it. Last year was one that Grampa made, probably one the last ones. This year it was your Chinese Tiger that Gramma and Grampa sent from China. June 13, 2010 was in the 5th month of the year of the Tiger, and you were one in so many ways. And you made me into a Dragon Mother. I learned to advocate fiercely, and love deeply. And somehow, inexplicably, breathe through unbearable pain. 

I heard the term "season of grief" the other day and oh it fit. 

November into December just hurts. 

It's dark.

Christmas is coming.

You're not here and neither is Gramma.

On this day in 2018, I wrote about our holidays. You'd been a turkey yourself. My good china platter held the turkey and it was close to the edge of the table. Disaster was narrowly averted when I realized you'd grabbed it and pulled it towards you. Not that you'd eat it or anything, you just wanted to play. But then I wrote (in naivete and ignorance): 

"Holidays are kinda weird for medical mamas.  You're so grateful for each one, but mindful that even the close ones aren't really guaranteed."

Sigh...

Never in my wildest dreams did I think you would go two days before Christmas. Even in your last few hours, I planned to spend Christmas in the PICU and bring you home a few days later.  2023 was the one year I decided to take the Christmas picture later, after Christmas when it would be quieter. The one year I didn't plead with God to give us another Christmas. 

It was quieter...  Too quiet.

I miss you, Aaron. This time of year hurts. Lights, music, joy, and sorrow. I told someone today that it's kinda strange to hold both joy and sadness together, and it is.

But I do it.

There really is no other option.

Love,
Mama

“Joy and pain, they are but two arteries of the one heart that pumps through all those who don't numb themselves to really living.”

Ann Voskamp 

99 Weeks... Forever to Go

Dear Aaron,

Somehow things seem darker than I remember last year.

Bleaker.

Quieter...

I went by the cemetery and while it was actually earlier than I went last year (I get off an hour earlier because I also start earlier) the light seemed dimmer, the sky blacker.

I went to Arizona to spend Grampa's birthday with him, and it was good. 

And hard.

The house seems so different without Gramma. He told stories, many I've heard, some I hadn't. I told stories, too. Ones that featured him that he doesn't remember anymore. 

We sat outside and watched a yellow butterfly flitting through the bushes and flowers. It seemed to stay for a long time. Were you and Gramma close by listening too?

Back here, the trees have lost their leaves; they crunch under foot and gardens seem bare. We may see snow next week. Winter is trying to force her way in. November was hard for you. Surgeries, pneumonias, and then storming. We spent one Thanksgiving in the hospital and came close a few other times. I miss those days because it means you were still with us.

It's been 99 weeks now since I last told you goodnight and kissed your warm cheek. And it really was warm; you were fevering again. 

Sometimes I close my eyes and I'm right back there, in that PICU room with the little Christmas tree above your head, the banks of IVs, and the machines with their whooshes and beeps. 

And sometimes I strain just to remember your smile, your laugh, your wiggles and moves.

Tonight is hitting hard.

Will my brain always count the weeks? It's been almost two years. It seems so odd to have another year that never knew you coming to a close. 

Candles flicker on my shelves, lighting dark corners. Your memories light the darkness I feel, but like the candles, the flame is small and sometimes feels like the darkness will overwhelm them. 

I miss you.

Love,
Mama

The leaves of memory seemed to make

A mournful rustling in the dark.

~Henry Wadsworth Longfellow

Memories

Dear Aaron,

November.

Almost December again.

98 weeks (will my brain always count weeks?)

I'm sitting in the airport getting ready to go see Grampa for his birthday.

It's still dark outside, but with the time change the drive to work looks different. The mountains are dark against a lightening sky. Or if I'm heading west, I'm still in shadow but the peaks glow in the sunrise.  By the time I come home, darkness covers the land but the sunset paints the horizon in coral, orange and red.

Yesterday was the Primary program and your Linnaea was so articulate. And so tiny. She stood next to another girl her age and only came up to Ruby's shoulder. I was beset with memories. 

An early song was "A Child's Prayer." I remember all the times my parents encouraged us to pray, knowing that He was there, would listen, and I felt like a child again in need of that comfort.  

I remembered the program in 2019. (click the link to hear him do his part) 2019 was a good year, a happy, healthy year (mostly). It was the first (and last) time you were part of the program.  You said, "I love Heavenly Father and Jesus, and being with my family." 

Then the children sang a new song, "The Miracle" and I had tears again in my eyes. He is a God of miracles.  You are one of His miracles. Your life was and you continue to be a miracle, helping and strengthening. And I still miss you. And I miss Gramma. 

Thanksgiving and Christmas are coming. Last year we were with Gramma and Grampa for Thanksgiving, and I put Christmas up just before we went. This year I think I may put it up next weekend. Yes, it's early but I need the light, the peace, the comfort. 

I'm deciding that just like grief, there's no "wrong" way to celebrate, to remember. I want to remember. I don't want to forget. 

I love you, kiddo.

Thanks for being part of my life.

Love,
Mama

Jesus is a God of miracles;

Nothing is at all impossible to Him.

But I know this:

Of all His miracles the most incredible must be

The miracle that rescues me,

The miracle that rescues you and me!

Shawna Belt Edwards

Wedding Day

Dear Aaron,

Your Andrew married Zoey yesterday. They are such an amazing couple, and to see all your brothers and sisters (and brother-in-law and sisters-in-law) together, minus you and Michael warmed my heart, and tugged on my heartstrings at the same time. Andrew was barely seven when you were born; he grew up with you.

At the reception, I saw a few friends I haven't seen since before you passed. And others who are ever present in my life, holding me up. 

This is our first wedding without you, and it was beautiful, and heartbreaking. I'm learning to hold both at the same time.

I didn't break down yesterday, and Friday was just too busy, but on Thursday as I went to see you, I saw evidence that others had been there, too. Two little pumpkins balanced on top of your stone, and the rocks were neatly stacked. 

I'm not the only one who remembers, even though sometimes it feels like it. I'm not the only one who checks on you. Yesterday, Matthew and Kensey took some time to go see you as well. They were only in town for about 36 hours but came by your spot.  

You know, 16 years ago about this time we found out you were coming to be in our family! I gave Daddy a small pumpkin and painted an American flag on the side to tell him we had a new blessing coming. You were due on the 4th, but came a few weeks earlier. Daddy still has that pumpkin. 

But anyway, when I stopped by on Thursday, I got out of the car (I don't often do that) and knelt by your side, and sobbed. I miss you, and sometimes I wonder if anyone else still does. I mean, I know Daddy does. He spends a lot of time in the temple and always looks for butterflies in the paintings. But most people's lives have moved on.

I guess in some ways ours have too. I no longer aim for your bedroom to give meds. I've learned to appreciate the quiet in the house, but honestly, I never really wanted it. 

The days are shorter, colder. I no longer need to pick up your butterflies and lights each week because water has been turned off and they won't mow again until April. Our second holiday season without you approaches. I don't count the first Christmas. You were here until two days before. So our third Christmas without you, but our second holiday season. 

I'm singing with the choir again and we're doing two of my favorite songs, ones I specifically associate with you: "Were You There When the Angels Sang?" and "Jesus Christ, the Apple Tree." I believe you were there when the angels sang on that long ago Christmas morning. And Gramma, too, and maybe me. I hope so. Music has been such an integral part of my life. And taking shelter under Christ as the Tree of Life, as the Apple Tree, brings me much comfort. Music soothes my soul.

Tomorrow is Gramma's birthday, my first one ever without her. I know I took her for granted way too much. I couldn't imagine a world without her. Will you tell her how much I love her? How much I miss her? And happy birthday for me?

Missing you both on this fall day. 

Love you, Aaron.

Love,
Mama

"Music expresses that which cannot be put into words...
And cannot remain silent."

Victor Hugo

"Aaron, It's Time For Your Eye Appointment"

Dear Aaron,

So today it happened.

I got a text addressed to you, reminding me that you were overdue for your eye appointment, and "eyesight is very important, so please call and schedule."

Yeah...

I don't think you really need that anymore.

I tried so hard to avoid those. I made sure that everyone at Primary's and their affiliates were notified. I called the eye glasses place. I forgot that we had been referred to a surgical eye specialist. They're not with IHC or Primary's.

They didn't know.

Now they do. 

Twenty-two months, 95 weeks, Friday into Saturday again.

Wednesday I planted 175 flowers and bulbs, many of them in your garden, mostly pansies and tulips. I wondered at the time if I was jumping the gun a little. I mean, it wasn't too early to plant those, but I felt a little bad pulling out and cutting the zinnias, marigolds, sweetpeas, petunias and snapdragons. I cut down all the balloon flowers and lilies out front. But I also reasoned that if I waited for a hard frost, I also had no desire to be out there. 

Thursday morning I got up and looked outside. Was that a hard frost after all? Nope, it was snow! Not a lot. The grass is short and was still poking up through it. But yes, snow. And I was glad I'd done all that work before. 

Your blanket and hospital gown no longer smell like you. I no longer wake thinking I forgot your meds. Someone asked me why I always wear a butterfly and I asked if they wanted the real reason, or the reason I tell my clients (since there are a bunch of butterflies in each office). He quickly said he didn't mean to pry and I told him it wasn't a problem. 

I've been wearing butterflies for over 15 years now, for you, for your friends. For all the children gone too soon. I told him my watch band is from the beads I used to make your trach chains, and he responded that it was almost like a memorial tattoo. 

I hadn't thought of that, but he's right. And so is my watch face, and my phone screen. Quiet pieces of you, and of Gramma, that I always carry with me. Yellow roses and butterflies. 

Gramma's roses still bloom. Pansies are planted around them. And your solar lights still light up the garden. I don't sit out there anymore 'cause I don't like the cold. But I still see them, see the rainbows scattered by various prisms around the house, some given to me by friends, and two by Gramma. 

You know, it actually didn't hurt as much as I feared it would when I saw that text this morning, more of a quiet ache than an overwhelming gut punch. 

Maybe I'm learning to carry it, at least for a moment. 

I still miss you.

Love, 
Mama

"The ocean has its ebbings — so has grief."

~Thomas Campbell 

Joy

Dear Aaron,

The weather continues to chill. Rain falls, the air is nippy, and I saw frost on the grass last week. The sun is just coming up as I go to work, and it's close to setting when I get home. 

It won't be long before it's full dark when I come by your grave.

Tonight I cleaned out your garden for winter. 

And tomorrow is the Wave of Light. 

October 15, International Pregnancy and Infant Loss Day. I mean, you were a teenager when you left, but still, you were and are my baby. I even called you my "forever baby" because of the care you needed. 

It's also Deborah's birthday. She's got her own two little ones now. Linnaea still remembers you and sometimes talks about you. Barrett came not quite three weeks after you grew wings. But he plays with your toys and I hope you two talked during that overlap. 

I've been reading old blog posts and some make me laugh, others make me cry as I remember the fear, the rush to stabilize you. But always, you came back. Until you didn't. 

With General Conference over, Joyful Christmas Sounds rehearsals have started. I almost didn't go. I find myself so tired again, and lacking motivation. That's probably due in part to all the stress and mess that we're still figuring out with the house. But Daddy encouraged me, and I needed it. 

We always start with the same medley, and as the notes rang out (or sometimes croaked out, I'm rusty), I felt it. I felt the joy of the season. I felt the joy of you! Because of Him, of His birth and life and resurrection, I get you back. I will hold you again. This separation will not last forever.

On my way to work this morning.

And you were and are all about joy. 

In 2016, we were trying to get a super-expensive med approved along with the equipment. In the meantime, you managed to catch a cold while in the hospital. It was the only time you got sick from something else while inpatient. (They worked so hard to keep that from happening,) But nine years ago today, I stepped out of your room to grab a bite to eat, and the nurse called. You had dropped your sats, a lot! You were on 15 liters, up from six when I left. I raced back getting there about the time the rapid response team did. I held your body as you shook, as they tried to place an IV and the RT was bagging you. And I pled with heaven to help you, help you breathe, breathe deeply. You came back, grinned at everyone with your trademark smile, and went to sleep. 

Coming home, it's hard to see, but there's a 
rainbow in the center reaching into the clouds.

So many times over your lifetime this sort of thing happened. You would be struggling, others would help, and you would smile. And then your last real smile....  Were you trying to remind me of all the joy of your life? Did you know that memory would be burned into me? 

Oh, I miss you, but the joy you gave, and continue to give, is worth every bit of the pain. 

As I drove to work this morning, the rising sun lit up the mountains in the west. And then on the way home, there was a rainbow, a promise of God's care. 

I will light candles tomorrow from 7-8 for you, and for all the others that parents had to give up. Acrossthe world, in every time zone, candles will be lit and for 24 hours, there will be a wave of light, light our children have brought to the earth, and then left behind to help us continue on.

Love you so much, kiddo. Thank you for being you.

Love,
Mama

Our birth is but a sleep and a forgetting;

The Soul that rises with us, our life’s Star,

          Hath had elsewhere its setting

               And cometh from afar;

          Not in entire forgetfulness,

          And not in utter nakedness,

But trailing clouds of glory do we come 

               From God, who is our home:

William Wordsworth

Living for Eden...

Dear Aaron,

Numb.

Seeking.

Searching.

Wondering if I'm the problem. If I'm looking in the wrong place. 

Even in the temple...

Do you remember the temple? We went a few different times to the grounds both in Salt Lake (usually with Michael during spring break) and here closer to home.

I'm trying but sometimes if feels like even with the car on and my foot on the gas pedal, I'm stuck.

But on Wednesday, your Michael said something that seemed so profound. "Instead going to The House of the Lord, make an appointment with the Lord in His House." (quoting Elder Bednar) That struck me, but it also felt awkward, stilted, mostly because I felt out of practice. But then, many, many things feel that way right now. Sometimes life seems to flow but often time feels jerky, racing ahead, stopping suddenly, and occasionally reversing.

So I tried. I saw a couple friends from the neighborhood, and that was nice, but still... I sat there and silently pleaded to know, to feel, to understand that He knows, He knows what I'm going through, dealing with, and that I'm not doing it wrong. And nothing. Even where I thought I would and often do feel it.

I sat in the Celestial room, still struggling. Dad came in and after a few minutes we stood to leave. As we passed a large group, a woman caught my eye. I haven't seen Tracy except maybe in passing in over 30 years. We lived near each other and were friends the first time Daddy and I lived in San Diego, back when David was born. She reached for me and held me, and I felt it. I felt His love surrounding me. My walls tumbled, my heart opened. 

I breathed.

Nine years ago I wrote about similar thoughts and pain. You were doing (relatively) well which gave my mind time to try to process; a painful procedure when you parent a medically fragile child. It was Conference weekend and I really didn't get much out of Saturday. But on Sunday, President Nelson spoke of Joy and finding it in the midst of any circumstances. That one hit and heaven's floodgates opened. 

Seeing Tracy opened my heart the same way.

There are still a lot of things going on that are, and will continue to be, super hard. The mom who was next to you the night you left me has now lost her baby girl. Two other little ones, a toddler and an infant, are critical. Child loss, losing you, is a pain beyond anything I ever could have imagined. 

But as I drove to work yesterday, "Living for Eden" was playing. The rising sun, the golden clouds, the birds flying in formation, they all reminded me of His love, and of your love. Life is such a beautiful gift.

I'm grateful for yours; I'm grateful for mine. I'm grateful for our amazing family and the chance to listen to the counsel from our leaders again this weekend. And I know I'll see you eventually. 

Love you so much, Aaron.

Save me a seat, 'k? 

Love,
Mama

"We all long for Eden, and we are constantly glimpsing it: our whole nature at its best and least corrupted, its gentlest and most human, is still soaked with the sense of 'exile'."

- J.R.R. Tolkien 

Don't Tell Me...

Dear Aaron,

I'm angry. 

I keep hearing the things people said. 

Things people still sometimes say.

And while I know they mean well, they. Just. Don't. Think!

"Are you excited to travel now that you don't have to care for him?" (Two weeks after the funeral.) NO!

"It's so good to see you finally getting back to yourself. I can see you feel better." (A month after you died). Um, no, I just wear the mask better, the mask I will wear the rest of my life. Grief makes people so uncomfortable.

"I could never be as strong as you. I guess God knew I wasn't strong enough to lose a child." Oh, it's not like I had a choice. And it damn near broke me. In fact, it actually did. I underwent cardiac testing six months after you left due to symptoms I'd had since you died. But I couldn't summon the energy to go in before then. Broken heart syndrome, takotsubo cardiomyopathy, is a real thing.

Don't tell me ,"he's in a better place."

Don't tell me, "You got to keep him much longer than you thought you would."  I know that, but I want you here. Now. Still. I worked so hard, loved so much, gave up almost everything to keep you alive. And you loved your life. Your life here. And you were loved so much! 

Don't tell me that "I know how you feel. We had to put our precious dog down a few months ago and I loved him just like a child." WHAT?? (Yes, someone actually said that.) I know people love their dogs, but honestly, every single person should realize they will outlive their dog. And it's a dog! Not flesh of their flesh, bone of their bone. They bought it; they didn't give birth to it. 

Halloween 2023
Aaron-dalorian,
showing me "The Way" 

Don't tell me "I only have so many ________ (fill in the blank with whatever event) with my children" 'cause you know, not really. You may only have so many with them in a certain age range, but really?? Are you planning to disown or bury them? Because I only got 14 Halloweens, 13 Christmases, 13 birthdays with you. And I get No. More. NONE! And I guess if they're worried about missing them in person, well, I missed three with your siblings, some of them very young, as we fought to keep you alive. 

So if someone wants to say those things, go ahead. Just not to a parent who has buried a child.

Your last Halloween, we draped your costume over you for a quick pic because you were so sick, fevering so high, so precarious, that we didn't dare put it actually on you. And Halloween is on the doorstep again, only five weeks away. 

Oh, Aaron, I miss you! The weather cools. Nights are officially longer than the days now. The leaves change and fall. And I relive over and over those last few months of your life. 

So many days and nights in the hospital. So many fevers, blood transfusions, close calls (that I didn't realize were quite as critical as they really were). 

It's been 92 weeks tonight. I went to sleep thinking it was just another night. We were on the right path. It was taking longer than I wanted but you would be okay.

And in the grand scheme of things, you did go home. You are okay, more than okay, but I'm still not. 

They say that anger is a secondary emotion; something else always comes first. 

Did you know that a broken heart actually hurts physically? 

Tonight I just want you back.

And I can't have you. 

Tonight I'm drowning.

I miss you.

Love, 
Mama

“I sat with my anger long enough until she told me her real name was grief.”

C.S. Lewis 

Learning to Swim

Dear Aaron,

I don't swim well. I never have.

And yet, I'm being forced to learn. It's that or drown. And I guess sometimes I still feel like I'm drowning. 

But sometimes I swim. 

Always I'm wet. I don't think that will ever change.

Our mountains change colors, the nights get chilly. I don't see very many hummingbirds although I'll leave the feeders up for a little longer in case there are some stragglers needing help. 

And I realized something the other day: I don't look at the mountains as much as I did that first year. I still notice them, but it's more of a conscious effort to see. 

The first year, I think I was looking around like you do when you're lost, confused, in an unfamiliar place with no idea how to get out. You look around hoping to find something familiar, someone who can help you find your way. 

And it was so hard, so confusing! I was so lost!! The idea of a world without you in it was unfathomable. And yet, I was required to fathom it. It. Made. No. Sense. (often it still doesn't)

And so I clung to the mountains, to the stars and the moon, the trees and the grass. I studied them because I knew them, and at least they didn't change (much anyway). 

They grounded me, and still do.

The past week has been interesting. Not far from where you are is another tiny grave. (Okay, I don't know how tiny the grave actually is, but there are only four days between the two dates.) In September before you left me, a little soul came briefly and left again. His birthday was Sunday; his angel date was today. On Saturday, I took two butterflies over to him and saw a few matchbox cars lined up on his stone. Yesterday when I went to pick up your butterflies (mowing day is Wednesday), there was another butterfly for you along with a matchbox car. 

Two sets of parents grieving, not knowing each other, and yet I hope I brought a smile to their faces like they did to mine. Do you know him? This little boy? Do you hang out together and keep an eye on us? Do you miss me as much as I miss you?

And today I took some things up to little Gracie Field. She is so critical right now. Her big brother was struggling in the room next to yours when you left. Mom woke up in the early morning hours feeling like something was wrong and heard sobbing. She prayed for us, for you, for me, and now I pray for her. I still have no idea how I managed to walk out without you. How my heart kept going when yours had stopped. How I kept breathing... 

Oh Aaron, I may be swimming, and even doing okay most of the time. 

But I will never be fully dry again. 

Love,
Mama

Just keep swimming...

Dory

September

Dear Aaron,

We're a week into September; fall is almost here.

The sun has already set and it's only 7:30. 

Nights are cooler.

Cold weather isn't here yet, but I can feel it coming.

This week was hard! 

Memories keep popping up, juxtaposed against each other. 

First day of preschool in 2013, and then a few days later going to the SOFT picnic and ending up in the PICU. 

Your Make a Wish Star Raising in 2016. 

Realizing in September of 2018 that it had been a year since our last 911 call, and that continued into November! 

Matthew coming home from his mission in 2018, laughing and joking with everyone, until he knelt next to you. And then the tears flowed. He left, each of your siblings left, not knowing if you would be here when they got back. And yet, they went because they knew how important it is to share the good news with others. You almost weren't here when Andrew came home. Twice I called the mission office to tell them the doctors didn't think you would pull through, but you did. 

And now Michael has been gone a year, but you've been gone almost two. He went by to see you before he left, and we won't see you when he comes home, but I suspect you'll be there.

And then, somehow, with all the memories of you and the highs and lows of Septembers, memories of Gramma were mixed in there, too. 

I keep remembering the tracings on your heart monitor as your heart slowed and then stopped, and the call almost a year later from Auntie T telling me what was going on in Arizona. How the only option was to intubate Gramma and put her on a vent, but the doctor didn't think she would be able to come off. How I understood academically that a ventilator lets the body rest so it can recover, but my gut said that wouldn't happen. And then he started talking about how that would mean a trach and a long-term nursing facility, and Auntie T said she knew I'd done that with you but .... And I interrupted her. "No, not for Mama, not for her." And that's where Tricia was going too. 

You loved your life, and the vent was a necessary component. You loved playing with the tubes too! But Gramma had for years made her wishes known and she wouldn't have wanted that. So we said goodby. I told her to find you and hold you until I could get there. 

And oh, it hurts, it hurts so much.

Your cousin Lauren got married yesterday and we siblings were all together for the first time since Gramma's funeral. Grampa wasn't able to come because he's struggling, and it was weird to be together, and not have them there.  

It's still weird to not have you here. 

Aunt Maurie send one of the sprays of roses home with me last night and Aunt Liz and I put it on your grave. It's the first time in a long time that I've had flowers to put there, and they're beautiful.

I don't do well with the cold and the dark and winter. It feels lonely and sad. Both you and Gramma struggled so much more those last few months, and then just when the world was at its darkest, you left. 

I sit on the patio and the hummingbirds fly back and forth. They drink voraciously at the feeders and the flowers. They work to gain the weight they need for their migration south, which will begin so soon. The world is shutting down. Soon the frost will come and take the flowers in your garden. The hummingbirds will be gone, and I will stop sitting outside until the weather warms again. 

Hunkering down, trying to keep going.

Missing you . . . always.

89 weeks . . . 

Love,
Mama

"I used to love September, but now it just rhymes with remember."

-Dominic Riccitello 

Zinnias

Dear Aaron,

An old blogpost from August 2023 popped up today, and I followed it down a rabbit hole, of sorts. 

You were heading home from the hospital, Yay!!

It was a relatively short stay, only a few days and on the floor the whole time. And you'd been home for almost nine weeks, which was huge for that year. 

And then I kept reading, following it forward.  Home didn't last long, only a few days, and then you were back and it was kinda ugly. I started crying for that me that was in the ER. I remember it. They paged "urgent response, code red patient" as they quickly walked us back. The room was full, but they moved like a well-oiled machine. Hospital vent was wheeled in, they put in two large IVs and started fluids, and you flinched but otherwise didn't respond. X-rays were done and read immediately. Code status was verified, and there was real concern. But even as I went through the questions, I didn't realize how bad it was; how bad it would be in a few more months. 

At the time, it all felt routine, and somewhat wearying since we hadn't even been home a week. Today I cried for the loss of the innocence I had in those moments. And for the mom I am who now understands too much. 

Aaron, I continued reading your story over the next four months, and sobbed. I didn't know. Unknowing, unconscious, unaware and very much unacquainted with the grief that was coming.  Somehow, I was being nudged,prompted, whispered to, and maybe deep in my soul I knew something. I recognized you were getting more tired, and it was getting harder for you. But your smiles were still so genuine. 

I miss you so much. I ache for the me I was, knowing now what she didn't know then, and knowing what was coming for her. 

You gave us so much love, so much hope, so much life.

I remember acknowledging the miracles we'd already received, and begging for more. 

And then receiving one in your peaceful passing. It really was peaceful, even though my heart shattered. 

And the outpouring of love and support from around the world and close at home.

And being carried through the last 20 months, 87 weeks, way too many days, without you. 

Tonight Linnaea and Elend helped me cut zinnias from your garden to bring inside. Avanlee wrote me a beautiful poem about zinnias and gave me the seedlings for Mother's Day. I'm trying to be strong. I'm trying to stand tall. Linnaea knows how to tell when a zinnia can be cut. You do the "wiggle" test, where you shake the stem, and if it stays firm, you cut it. But if the stem and flower wiggle back and forth, it needs to be left to grow more. 

I'm trying to stand firm. I'm trying to trust the process. Sometimes I think I'm still too wiggly, but at least I'm growing.

And growing can hurt. 

I love you so much, Aaron. 

I miss you.

Love,
Mama

her bloom gives hope,

and those who tread

find respite in

her garden bed

Avanlee Peterson

Through a Glass Darkly

Dear Aaron,

I still go see you each night, although to be honest, I'm drawn more to your garden here than your grave. The other night as I went, I timed it just right for the sprinklers to be going over your spot, and I really couldn't see it.

Oh, I knew it was there. And there was a darker gray outline behind the gray curtains of the water spray. But I only knew it was there because I knew it was there. And in my mind, I could see it, hazy behind the droplets, still with your name, your smile, with the reminder that you are still Compatible With Joy. And those dates that bookended your life here that we crammed so much into. 

And I wondered...

I mean, I know you're still you. You couldn't possibly be anyone else.

A memory popped up from 15 years ago where your Jonny mused to me that perhaps you were the superhuman being and you needed that extra 18th chromosome to be able to tolerate living here among us typical mortals. Maybe...  

Your FIRST first day of school

School started again. You'd be in 10th grade if you were here. Your Linnaea started Kindergarten yesterday and she is loving it. Do you peek in on her? You loved school so much yourself. And you had your own ideas of what you wanted to do there.  

I went to the SOFT picnic on Saturday, only the second time I've gone without you. I remember last year it was windy and hazy, and I didn't worry about your asthma and breathing 'cause, well, you weren't here. And this year it would sprinkle and stop, and then start again. And I didn't worry about electronic medical equipment getting wet. But oh, I wish I still had to. I miss you so much.

My cousin sent me an article from the New York Times called, "Noah is Still Here." I read it and it brought back so many memories. Trached, vented, g-tube dependent. Funny, friendly, outgoing. Playing with siblings and staying up all night. His bed even looks just like yours. It was beautiful, and poignant, and in a way, cathartic. 

Dr. Carey brought me a copy of the AAP News, the monthly magazine put out by the American Academy of Pediatrics. You, my son, are in there.  Back in the 70's, T18 and T13 were lumped together and declared "incompatible with life." That has now officially changed. Routine care, examinations, treatments etc should now be offered to all parents whose babies come with this extra bit. Care should not be denied based on that extra chromosome, and treatment should not vary between institutions. If a hospital cannot provide the level of care needed, the child should be transfered to a higher level of care. And so on. 

And you are part of this. Your baby picture is on the postcards that are being distributed to prenatal centers across the country. 

You touched and continue to touch so many lives, improving outcomes, giving hope, being "Compatible with Joy."

And yet, I still feel the darkness, the cloud, the lack of clarity and I miss your physical presence. 

I guess that's what happens when you love deeply. Those paths you carved in my brain are still there, waiting for something, waiting for you. 

And you're not here.

I know the day will come when I see clearly again, probably even in this life (although I still won't see you). Right now, I'm trying to trust the process. 

I guess that's all I really can do.

I love you, Aaron.

I miss you.

Love,
Mama

"For now we see through a glass, darkly; but then face to face:
now I know in part; but then shall I know even as also I am known."

1 Corinthians 13:12 

Days Are Getting Shorter

Dear Aaron,

We sat around the table tonight telling stories about you. We laughed and smiled, and for a moment it was almost like you were still here. 

Your Andrew is engaged. He found an amazing woman who is so much his match. I think you'd love her, too. They're getting married in November, and it's the first wedding without you. I mean, I guess you missed Matthew and Kensey's wedding because you were still in the hospital, but you were discharged the day of their reception so you made it to that. 

Time keeps moving on...

I was driving last night as the sun was going down, coming back north into the valley from the south end. The light hit our mountains just right so they seemed to glow. As I looked around I could see the mountains on every side, strong, immovable, comforting. Almost like I was being protected, and I thought of you. I remembered all the times I drove north to Salt Lake in the evening after school or work. I don't think I noticed them much then. I was always so focused on getting back to you, trying to figure out how to help you, hoping we could go home soon. 

And ultimately, I guess we did both go home, just not to the same place. Eight-five weeks ago you went home to Heaven, and I drove home with Daddy.

The longest drive of my life...

It's been more than 18 months and most of the time, most of the time I'm okay. I remember you, tell stories, see pictures and it's okay. The pain is there, but it's quieter, maybe deeper, more a part of my soul and less obvious. But sometimes it breaks through and I'm lost all over again. 

I was watching some short videos that Holli sent, and then looked back at others she had shared. The earlier ones, from the aquarium, playing with your blanket, doing math at school and laughing were so fun. But then there were some she sent me from school just a few months before you left. You were struggling, neurostorming was hard, and you looked so tired. Clear to the end, you maintained your spark and your zest for life, but you were done. Your spirit was so strong, but your body wore out. 

I will never forget the last big wonderful smile, ten days before you left me. You were crashing and the room was full. You looked around and gave the biggest grin.

Were you saying goodby? Were you saying thank you? Did you know you were almost done with your race and could soon stop fighting? 

The days are getting shorter, and the nights cooler. Not many weeks ago it would have still been light out but now it's almost completely dark. I'm sitting here with socks and a jacket, and fall and then winter will be here. We're more than halfway through the second year without you. 

And tonight, it is just hard.

Miss you so much.

Love you even more.

Love,
Mama

“Memories saturate my heart and the story of you spills from my eyes."

— Grace Andren