Christmas is Coming

Dear Aaron,

Christmas is coming.

I love Christmas: lights, decorations, music. Warmth, family, love. Candlelight, warm blankets, friends.

And several years we "enjoyed" the hospitality of the Hotel on the Hill during December. But that's okay. You liked it there. You actually loved it; maybe because they loved you, too. It was very different than at home. Instead of Christmas carols, we were serenaded by ventilators and telemetry alarms, IV pumps and feeding pumps. We had the constant lights of the PICU, but there were warm blankets and friends, and love. 

Everywhere you were there was love.

I put up most of the Christmas decorations this week. All that is left are the ornaments for the tree and a surprise Dad and I are working on. Just like pretty much every year, I did find an ornament we missed when we took the tree down. Usually it's one of the little glass or crystal ones, but this time it was one Grampa made for me a few years ago with his lathe. He doesn't use it anymore. He's getting older, more frail, and I wonder how much longer before he and Gramma join you. Selfishly, I hope it's still a ways off.  

I know I'm decorating early. Thanksgiving isn't until a week from today. But this year I need it, and I need it now.

There are only five stockings on the wall, just five. The big kids who are married have their own, Michael is on his mission so we'll send gifts to him, and yours... I just couldn't hang it with the rest. Those stockings will get filled, and I want to do something with yours, but it won't be the same. So it hangs on a different wall.  I need it up. I need to not feel like you're being erased, but it's still different. And it's hard. 

I miss you, Aaron. I miss watching your eyes light up as you see the tree, seeing you enjoy the dancing penguins above your bed, needing to turn those off so you would actually go to sleep. I miss the gentle Christmas lights we wound around your play bars that would gently fade in and out through the night. 

Christmas will be different this year. For the first time in 33 years, we won't have any children (okay, or adult children) sleeping here on Christmas Eve. We had two Christmases back in the beginning of our marriage but that was a long, long time ago. 

And then ten years ago, you and I spent Christmas in the PICU. I thought we were going to do it again last year, but I guess there were other plans. I came home with Daddy, without you, and you went to spend Christmas with Jesus. I bet it was an amazing Christmas. Did you sing with the angels? Were you there? You love music so much, I feel certain you sang your heart out. 

Will you check in on us this year? 

Please?

It's been 11 months, 48 weeks, on Saturday. One more month and it will be a whole year since your heart stopped and mine, somehow, kept going. 

I really don't know what to expect Christmas to look like. 

I'm so grateful to be your mom. I love you.  I miss you.

Love,
Mama

“The most important thing is, even when we're apart ... I'll always be with you ...”

- A. A. Milne 

A Year Ago Today...

November 19, 2023

Dear Aaron,

It's been one year exactly since your last (typical) discharge. 

We had such high hopes! We thought we had a good plan in place. The PICU docs (along with cardiology, pulmonology, infectious disease, and others) worked really hard to optimize your health. We finally conquered that nasty tracheitis that caused so much trouble. 

And when we left, you were smiling.

That smile was part of what Dr. L and I talked about ten days after you died.

She remembered it, remembered the joy you exhibited, told me it was proof that we were NOT doing too much, that we were supporting you in the life you loved. 

Oh baby...

It's been almost a year, not quite five more weeks until your angelversary. 

I don't often get caught off guard anymore, not nearly as much anyway. Smells and sounds still do me in. 

But the fridge . . .  

Your meds and food were always on the bottom shelf on the left. Everything else in the fridge gets moved around, always has. But that was where your things always were, for 13 1/2 years. Just shy of 11 months without them, to see that empty space still cuts me.

I miss you, Aaron. I go by your grave to check on you every night after work. I mean, it's not like you're really going anywhere, or there's much to do for you, but I have to. I don't now how to not do the little I still can. 

So I go by and replace the butterflies that get tattered in the wind. I smooth my hand over the granite, gently touch your smiling face, and trace the letters of your name.

I guess you're all tucked in.  I covered you with your weighted blanket, the one that says "I love you" over and over and over on it, just before we closed the casket. 

And my heart still aches...

Miss you . . .

Love you.

Love,
Mama

"These days grief seems like walking on a frozen river; most of the time he feels safe enough, but there is always that danger he will plunge through."

David Nicholls 

Heartstrings

Dear Aaron,

There's a book I often read with kids called "The Invisible String." I've now read it enough that it doesn't (usually) choke me up, but I had to prepare myself initially. 

Jeremy and Liza are trying to figure out how far the invisible string reaches. It goes from school to home, between best friends, all the way to the jungle, France, even outer space, and then... 

Then Jeremy quietly asked, "Can my String reach all the way to Uncle Brian in Heaven?" 

"Yes . . . . Even there."  

Even there, all the way to you in Heaven.

I know my string reaches there because it hurts when it gets tugged. 

Last night I looked at the night sky, the full moon sailing among very light, whispy clouds, bright enough that it could be seen, but overcast enough that I saw no stars. And I wondered...

Do you see it, too? 

I felt the tug of another heartstring yesterday when I got the mail. Inside I found a package from a dear friend I've never actually met in person. From the other side of the world, she thought of me. The two gifts she sent were what my aching heart needed: an acknowledgement that I will always talk to you and miss you, but I know you are at peace; and a reminder that strength comes through battle. She fights her own battles and knows just how debilitating loss can be. 

Your smiling face greeted me today. I have no idea why I posted this one a year ago. I mean, it was taken in July at Joseph and Sarah's wedding, and you were in the hospital in pretty rough shape. In the PICU, having survived hemorrhaging from your lungs and working through newly discovered pockets of infection on your spleen. We were working towards home, having been there for a month, but still not quite ready. But somehow, I put this picture up, and today it brought a smile to my heart, along with tears to my eyes. 

Forty-seven weeks, 47 and so many, many more to go. 

I'm trying to get ready for Christmas. I hope to put up outside lights tomorrow, and maybe the inside decorations next week. I'm ordering presents and making plans. And I wonder if part of me is also just trying to stay busy to avoid the hollow ache of you not being here. It still sometimes seems surreal. I watch the 19 second video I made a couple weeks ago about your room transformation . . . Or I squint in there, hoping to see your shadow, your ghost. But you're not here. 

Does my string pull so hard because you're tugging on it?

Do you miss me as much as I miss you? 

Do you watch over us?

I pray that you do.

I miss you.

I love you.

Love,
Mama

“People who love each other are always connected by a very special String, made of love. Even though you can't see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love.”

- Patrice Karst 

46 Weeks, and Tender Mercies

Dear Aaron,

As I drove home on Thursday, to the east the black mountains with their white peaks were silhouetted against a darkening indigo sky.  At the cemetery, I looked to the west and the last oranges and reds of the sunset hung over the western mountains. 

I felt sheltered, embraced, protected by the mountains. That might seem silly. I mean, you're still gone, not coming back, but they're sturdy, constant, and (hopefully) immovable.  They were there long before you or I were here, and will be long after I'm gone, too.

It's 46 weeks today, Aaron.  And 45 since we close the casket and I last saw your face, touched your hair, kissed your cheek, tucked you in. Today felt so, so lonely...

And then I got home and found a package on the porch.   

Just after you passed, a friend reached out and said she wanted to bring me a special blanket. She lost her own angel just over two years ago and somehow, God knew that I needed to receive this today. Not just after you passed, not on your birthday, not after you'd been gone six months or even on your angelversary.

Today. On a day that was just a normal, typical Saturday for everyone else, but when I felt alone and lost. 

I know she is close to Him, and her heart follows His promptings. I am so grateful...

Six years ago today we took a family picture. Joseph was leaving on his mission; we had everyone here, but just barely.  We had a tiny window of time. 

Deborah and Bronson were home from their honeymoon and Joseph was going to the MTC on Wednesday. And you were sick. How sick? Well, sick enough that I had bagged you a few times at church. I knew we needed additional help, but also, Joseph was leaving. While ultimately, you were here when Joseph came home (and Andrew after his mission) we couldn't expect it. As I read back over my writing from that November, someone had asked me when I would stop being worried that ________ (fill in holiday, birthday, picture, whatever) was the last time it would happen. I replied, "when one comes and he's not here," and choked back tears.

So we took the picture, and I called an ambulance. Sigh... 

Now you're not here, but I can't take a picture without you. And I have no idea how to do the holidays without you. And so I won't. I mean, we'll still do pictures and holidays and birthdays and hopefully weddings and so on. I figure you'll be here in spirit anyway, so I have a stand in for you. Because you're still important, still a part of my heart, and you always, always will be.

I love you, Aaron.

Love you so much.

Love,
Mama

“Heaven doesn’t ignore cries of a broken heart.”

Toba Beta 

Last Year...

Dear Aaron,

I'm sitting at lunch and just have to write.

Snow stuck to the grass for the first time today, and the swirly flakes and the cold somehow reminded me so much of you.

 We bundled you up so well! Hat, gloves, jackets, blanket poncho and of course the fleece-lined minion stroller sack one of your bus drivers made. Plus heated stuffies and rice sacks. You were toasty!!

Fourteen years ago today you went in for your first surgery. You got a g-tube and nissen and were off to the races. We found out you needed a trach, that somehow, inexplicably, you were managing to breathe through airways so collapsed that your doctor was shocked you were able to move air at all.  And yet, you did. 

My last picture with you before you left.

I had forgotten that this was the day, and yet, I hadn't. I woke with a headache and a total lack of desire to get out of bed. And that carried over into my morning preparations. It was only when Facebook reminded me that it put it all together. 

And November brings Thanksgiving, which is a wonderful holiday, and also the day that each year I pled with heaven to spare you for just one more Christmas. Every year that is, except last year. Last year you were freshly home from your longest hospital stay and we thought we had a good plan. Last year I didn't take a picture of you in front the Christmas tree because things were just so busy and the week after Christmas would be so much more relaxed. Last year I didn't even consider that things would change. 

 Last year they did.   

December 23, 2023. I decided it was time
to stop putting off pictures.

And now we have this year. Or I have this year. You're not here. We're coming to the end of a year that never knew you, and I don't know how to "do" this year. 

I mean, I guess I'll figure it out. It's not like it's going to stop or go away. 

But sometimes, sometimes I wish time would stop. Sunday afternoon, I laid down on the daybed in my office, and when I woke, for a brief second, I saw your room the way it was a year ago, with you there, and was surprised all over again to blink and watch it change. The piano instead of your bed, the couch instead of your armoire, silence instead of your machines. 

I'm so thankful for you, really, honestly and truly. And again, given the choice of having to learn to live without you or having never known you, I would choose this pain every single time.

But still, it hurts...

Miss you so much. 

Love you even more.

Love,
Mama

Time is the only thief we can't get justice against.

~Terri Guillemets 

15 Halloweens

Aaron-delorian, showing us The Way

Dear Aaron,

It's Halloween. 

In past years, it was my deadline for people to have their flu shots. Honestly, this year I don't know who has and who hasn't. I know I've had mine, and Michael got his before ging to Arkansas. I just don't know about anyone else.

I look back through the years. Three times you were in the hospital, and a couple more you were kinda sick here at home. Frankly, out of all the holidays, Halloween takes the cake (or candy?) if you have to be inpatient. 

I think you only got to go out trick or treating once, in 2012. You wore the clown costume that each of the older kids wore. I hadn't allowed myself to even consider that you might be able to, but you did. 

And last year, you were a Mandalorian, or as Dad calls you, the Aaron-dalorian. You showed us The Way. Frankly, you were so, so sick that we didn't actually even put it on you, just draped it over you. 

Trick-or-Treat, what a treat 2012 was

I had to laugh at myself as I went through the pictures and found the year that I held a full-blown argument with myself over whether or not you should go to school. You were not quite better from being sick, but "it's Halloween! You have to be there!" And the other side of my brain replied, "He doesn't care." "But I care!" ('Cause you know that's the most important thing, right?) Anyway, I did finally decide to be reasonable and kept you home, and when you did go, you wore your costume then, my little Superman. 

You were Superman, and a clown, and The Boy Who Lived (and lived and lived, until you didn't). You were a minion, and a pumpkin. 

Tonight, Rachelle Adams brought by your flowers, the domes for your siblings, two ornaments, and the large arrangement they put together from your funeral.  

You are my hero, my example, in all your forms.

I miss you. I love you.

Love,
Mama

15 Halloweens... 

"And so you haunt me. Always with me, you are the invisible diner at our table, the constant presence that trails me as I go about my daily routine.... In the darkness of a closed-lidded world, you are alive and vital, unchanging, mine. You are the ghost of everything that once was lovely... a shadow casts its majesty over everything that remains..."

~Samantha Bruce-Benjamin

Blustery Day

Dear Aaron,

It's cold and dark. 

Remember Winnie the Pooh's blustery day? That's what it was like last night. When I went to the cemetery tonight to gather your things, most of your butterflies were tattered. I think two of the ten still had both wings, and some didn't have any. I guess that's okay. I mean, you were pretty tattered too by the time you left. Your heart and lungs hung on as long as they could. 

And somehow, the wind last night, the rain today, well, it felt lonely.

On Sunday, someone came up to me at church and said they'd been thinking about you all day. I didn't even know what to say. I teared up. In so many ways, the world has moved on without you. I sometimes wonder if you're remembered. It hurts to think of you forgotten. 

And then this morning I found myself talking to you, very much like you were still here. It wasn't anything monumental or important.  "You know, Aaron, that's not the way it's supposed to go." And then I realized what I had said. I chuckled, and then smiled wistfully, and then cried. 

October was often a difficult month for you. You spent a lot of it in the hospital, often pretty sick. Fourteen years ago we were preparing for your g-tube surgery, not realizing it would be followed a few days later by trach surgery. You had an nj-tube (through your nose, down past your stomach, and into your intestines) at the time, and when it got pulled out, we had to go up to Primary's to get it reinserted. Placing your ng-tube into your stomach was easy-peasy. But when we learned you were aspirating, it had to be pushed further and that had to be done with imaging to make sure it was in the right spot. 

Primary's ER was amazing and quickly got it done. Mary was singing a solo in the choir concert and I begged them to see if it could be expedited because your older kids missed out on having me at so many activities; she needed me there. They did, we hurried home, and were there before she went on. And then, we also ended up in the ER because you were struggling to breathe right. Sigh...  The good part was, we came home again without having to be admitted. But that was an intense day. 

Two years ago was your last surgery. Your lungs and heart struggling, we'd decided no more surgeries and then found you had a fistula in your right groin. Your artery above the hole was about four times the size of what it was below, and that stressed your heart even more. The risk/benefit scale slightly tipped in favor of surgery, so with my own heart in my throat and many prayers and faith, you went into the OR. I was terrified, but you pulled through and immediately after surgery your right foot felt warmer and was pinker than it had been in years. However, it did take you 48 hours to discharge from that "same day surgery." 

Aaron, it's been a rough week, a hard week. I feel like the train is starting to race out of control again. Halloween is in two days, then Thanksgiving, and then . . . just before Christmas, your angelversary. It's almost here and I can't quite wrap my head around it. 

How can it be a year already?  How is it only a year?? And how do I do this?????

Tonight is the last night I pick up things from your spot for several months. Between April and October, every Tuesday night I've taken down your lights and butterflies so they could mow. Every Tuesday an alarm went off at 6:30 and then again at 8 to remind me. I will still go by every night to check on you. Does that seem weird? I mean, it's not like you're going anywhere. But I can't tuck you in, snuggle you, turn on Scout for you, so I do this. 

I miss you, Aaron.

Miss you so, so much. 

Are you close by?

Love,
Mama

“The clouds wept when my heart sang a song of sorrow.”

- Sonya Watson 

Ten Months; Hard Things

Dear Aaron,

Ten months ago, almost to the minute, I kissed you good night, tucked you in (sorta, you were running a fever again) and told you I loved you.

You had listened and even responded to Daddy when I called him and held the phone to your ear while he told you he loved you.

Neither of us dreamed that the end was so near...

Baby, I miss you so much!!

Saturday I went upstairs thinking I ought to take the batteries out of your various toys. I don't want them to leak battery acid and ruin them. I turned on Scout and listened to him say, "Hi, Aaron!" and then quickly turned him off. But in moving a couple things, I bumped your musical hedgehog and it started playing music. That melody has haunted me since. I have been closer to tears, and cried, more frequently since Saturday than I have in a long time. And the batteries are still where they were. 

I feel stuck.

Or torn in two.

Part of me moves forward. I mean, time moves on, the seasons change, and there is growth. There are a lot of things I can now do that I couldn't before; a freedom that frankly I didn't (and don't) want.

And part of me is still stuck in the PICU room at midnight on December 23rd, watching your heart rate slow, the wave pattern turn sluggish and shallow, your breathing cease. 

A year ago today I wrote about my frustration at being in the hospital. Part of me wishes I'd known what 2024 would bring. A bigger part is glad I had no idea. And every bit of me is grateful for the care you received there; not just the medical care, but the personal love and concern that was shown to you. 

You touched hearts and lives of those who knew you there as well as in other settings. You were more than just a job to them. You made them smile, inspired many to search for possible treatments, taught them that life could be really good, even when it was hard.

And I guess that needs to be my take away, too. 

I never could have imagined how hard this would be, but it is still good, even when it rips at my soul.

I can do hard things. I kinda have to. And I had an incredible example and teacher in you.

I miss you.

I love you.

Love,
Mama

“So it’s true when all is said and done, grief is the price we pay for love."

E.A. Bucchianeri 

Absence Doesn't End

Dear Aaron,

I saw something today that really resonated with me.

Death is a singular event, a one time thing. Absence goes on. 

When you died (okay, that still seems so hard to say!), the world did stop and mourn with us. 

But you didn't die again, that had happened. So the world started up again and moved on. 

But you were still gone.

And you are still gone. Now it's absence. 

You left me on December 23rd and I have woke up 301 days since then without you, and I will again and again and again. To days and weeks and months and even years without you, times that you are not part of. Your absence stays. It's the hole in my heart, the silence in the house.

Your stone is so beautiful, so perfect. I saw it tonight, lit up in the lengthening shadows. I could not ask for anything better for your spot. But it is still a poor substitute for you. Your smile is brilliant but static. There is no laughter. And granite is cold and hard, unyielding. 

Yesterday Jeremy came to see you in heaven. I woke to his mother trying to find words to describe the impossible, unthinkable. I'll always remember the two of you at Heather's daughter's wedding reception. She was nurse to both of you and you guys knew she loved you, but honestly, who didn't? You are both warriors and we are so blessed to have had you. And now Bambie has joined this awful, horrible club that no one ever wants to be part of. He was 11 months younger than you, and lived almost 10 months after you moved on. And her mornings of waking without him have just begun. 

Oh, Aaron, I miss you so much! Each morning starts without you, and each day ends without you. Coming home from work, especially on Fridays, is so hard. But I'll keep doing it. Because somehow, even without you here, the world keeps turning. 

And it's better for you having been here.

I love you, my son.

Love,
Mama

“The heart will break, but broken live on.”

- Lord Byron 

Deborah's Birthday and the Wave of Light

Dear Aaron,

It's Deborah's birthday today. Another one you're missing. We celebrated her and Avanlee and Linnaea on Sunday, but today is the "real" day.

She was such an incredible support when we were waiting for you, and then again after, through the years. She was the first to learn how to change your trach and bag you and give you your meds. She ran the other kids around and kept tabs on them when you and I took our "vacations" to the Hotel on the Hill.

She now has her own children and is such an amazing mother. I think I was pretty much still a child myself when she was born, only 22. You two are my bookends, surrounding the others and teaching all of us. 

Today is also the Wave of Light where everyone lights a candle from 7-8 pm creating a wave of light across the world in memory of children gone too soon,

I've done this for 14 years now, but never in your memory. When I tried to take a picture of your candles, my phone just started snapping them. It recognized your smile. What a wonderful smile you have.

I miss you, Aaron. 

I love you so much.  

I do wish you were still here, but much more for me than for you. I keep remembering your last almost two years and how hard those were for you. Toys we got for Christmas 2021 because you played so much with them at school were largely left untouched.

I watched as a client today manipulated some of them the way you did initially, but not after February 2022. You didn't have the strength, or the energy. What a warrior. Thank you for continuing to endure. 

I'm trying to as well. You kept smiling, kept trying. I guess I do too.

Love,

Mama

“Not all siblings walk hand in hand, for some are in heaven while others walk on land.”

 — Unknown

Wave of Light

Dear Aaron,

It's October.

October 15th is the Wave of Light where we light a candle from 7-8 pm in our own time zone and create a wave of light around the world in memory of our babies who are not here anymore.

I think I've done it every year I could since you were born. (Sometimes we were in the hospital and they kinda frowned on open flames there.) I light a candle in memory of friends and family whose little ones play in heaven. 

And this year . . . . this year I will do it for you. 

Your light still burns bright, much brighter than a candle, but the candle reminds me of you.

Tonight I also "lit" my battery candles. It's funny how during the summer I don't really "need" them. The batteries run down about the time that it gets light again and I just leave them alone.

But now that it's dark earlier, and seems so much darker even later, I need the light. So Linnaea helped me change all the batteries. There's a LOT! 

And now the dark corners in the house have light. The bookshelves in the living area, the hutch in the dining room...

And the curio cabinet with your hand molds, your pictures, your butterflies and your bunny. 

They flicker and cast a warm glow and remind me that hope lives.

And you live, just not where I can currently see you. 

I want to sing in the Christmas choir this year. Practices start tonight. I haven't been before the pandemic, and you were there at my last performance. Will you hang out with me? I don't really want to do this on my own. The past several years I did it, one or another of your siblings sang, too. In fact, I think someone has every year since Deborah turned 16 some 17 years ago. But now, it's just me . . .  and maybe you? 

I'm kinda nervous, Aaron. I haven't sung since you died, not really. I mean, I can usually sing the hymns at church (but not always) but otherwise, I haven't. It took me many months after you were born to be able to sing to you without crying, and now I wonder if I can do this. Help me? 

Christmas music has always been a light to my soul, pretty much like you. 

As I look at the candles, I remember you, your strength, your tenacity, your joyful spirit. 

Love you, kiddo.

I'm still trying.

Be close?

Love,
Mama

Now is the flickering flame of a single candle

Forever—the endless light of a galaxy of stars.

~Terri Guillemets 

Broken

Dear Aaron,

I'm starting to feel like a broken record.

Or broken anyway...

Tonight into tomorrow is 42 weeks. (Will these numbers always play in my brain? Will I always know how long it's been?) 

Ten months ago you were admitted for your final time.

Ten weeks from now is your angelversary.

Generally I like numbers. They're predictable, reliable, solid. 

I don't like these. 

It still seems so strange that you're gone, but it's also becoming more .  . . something . . . maybe believable? But I don't want to believe it, or live it.

I still want to go back to last year when I had my innocence, when I thought I understood, knew, and I was so, so wrong. 

I mean, I did know a lot. I knew what it was like to take care of you, to hold you, to rescue you, to plead, cajole, tease you to breathe. I knew what it was like to spend hours on the phone getting your supplies, your meds, trying to organize schedules and nursing. I knew what it was like to hit the ground running every morning at 6, and to finish your meds and tuck you in late at night. I slept in the office across from your room. I drove to Primary's so many times that it was like being on autopilot. We called 911 enough that I started recognizing dispatcher's voices, and we knew the paramedics by first name. And while I did know fear and anxiety, I didn't know grief. Not really.

It's getting so dark. The sun is barely up when I go to work. And it's down by the time I come home. I don't sit on the patio in the evenings anymore. It's getting cold.  

Yesterday was Linnaea's birthday. She's five now. Do you remember when she was born? How excited you were? You had to tell everyone at school that "we have a baby girl!!" I think she still remembers you, but Elend won't, and Sterling and Barrett and any future niblings won't know you in this life. 

Are you playing with them in heaven? Did you bring Sterling and Barrett here? Did you tell them all about us? 

We hear about being mended into something better after breaking, but I don't think anyone talks about the pain of being broken. I have faith that I can find my way, with help,
but right now...

Oh, Aaron, I'm getting used to the quiet, the silence, but tonight it echos so loudly.

I miss you...

Love, 
Mama

“The shattering of a heart when being broken is the loudest quiet ever.”

Carroll Bryant

Memories...

Dear Aaron,

Facebook memories are a two-edged sword. They bring smiles, but also pain. 

Eight years ago we started your inhaled heart med, the one that you responded to so well and so quickly, and that was probably how we kept your heart going the last several months as we increased its frequency. What a blessing it was.

Five years ago someone asked me if the flu really could kill you. Oh boy...

I assured them (and the rest of Facebook) that yes, it could indeed.

Then last December as you were fighting, the doctor reminded me that Flu A kills healthy people, and I responded with, "And Aaron isn't healthy." 

One week later, you were gone.

Tonight is one of those nights that my heart breaks all over again (or still, or something). Maybe I'm more fragile because I'm still trying to regain my strength from my own illness (whatever it was).

Maybe because it's now almost dark when I get to the cemetery, and your solar lights really aren't that bright.

Or because this time of year always raised my anxiety and last year we spent so much of it in the hospital anyway.  Last year we were actually home, but ten days later you began your longest stay yet, minus a 25 hour field trip that ended with another ambulance ride.

This last weekend was General Conference, and Saturday's opening session began with the Primary song, "My Life is a Gift." Do you remember listening to that from your PICU room? I think it happened at least twice. There was something so touching, so poignant about hearing that bedside with you fighting for your life. And then this weekend being reminded that your life was a gift, and mine is too.   

So many reminders. 

And yet, they are also tender mercies. I've been rereading blog posts from 2019. It was a good year! You were overall pretty healthy and the pandemic didn't exist yet. That was the first year, and only year, you participated in the Primary Program. You attended my Christmas concert for the first time. I wanted to remember seeing you in the audience, so we made it work. I haven't sung with them since then which is not something I could have foreseen. And so many other memories. 

You were vibrant, funny, so very alive and so joyful. 

I find myself grateful through tears for the blessing of you. 

Oh, I miss you.

I love you so much. 

Love,
Mama

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

 ~Robert Brault

Sun and Shadow

Dear Aaron, 

This morning I was running a couple errands early, although not as early as I did on Saturdays when you were still here. Then I had to be back home by 8 to sign out a nurse. Today I didn't leave until almost 8:30. Whatever...

Anyway, the sun was peeking over the mountain, just barely. As I drove, sometimes it hid, sometimes a tiny beam shown, sometimes the full glory appeared. 

I'm starting to wonder if that's a metaphor for what I'm dealing with.

Sometimes I'm okay, even happy for you, at peace knowing you're whole again and just grateful for you, your lessons, the gift of you and a much longer life than we had expected. Sometimes that joy is tinged with the pain of missing you.

Sometimes it's dark, overwhelming, aching pain of your loss.

And sometimes it vacillates pretty quickly along the spectrum. 

I don't cry every single day right now, but still on most of them. And there's days where everything moves pretty smoothly, okay, and then suddenly it hits all over again. A song, the stoplight by your school, something I see online, a memory. 

A smile, a laugh, and then followed by a sob. 

Or even the other way around. 

Today is General Conference. Today we hear from the prophets. It will be a different experience. Daddy and I are both getting better but we're not 100%, so no one will be joining us. From weekends with a plethora of snacks, blankets and pillows on the floor and plenty of "shhh, I can't hear," or ones in the PICU with it playing on the TV in the corner of your room while I met with the team rounding, to this one.  It will be the two of us (and the dogs). We have food but not really needing lots of sugar and snacks to keep us focused.  It's different...

I miss you, Aaron. I miss the me I was before you left. I thought I knew pain, knew heartache, but it was only a shadow of what was to come. There is no preparation for burying your child. None.

And that's probably good.

I love you.

Love,
Mama

“You meet grief without introductions”

― Jane Edberg 

So Sick

Dear Aaron,

This is miserable.

It's not Covid, we tested. It's not the flu, it came on too slow, but it's something nasty.

Maybe your old nemesis rhino?

But I don't remember feeling this lousy before. 

My body aches, my throat is raw from coughing, my nose is a faucet, and I've fevered. At 55, 102* is miserable! Fortunately, it hasn't gone up that high today. In fact, it's not truly a fever, 99.8*, but still...

Yuck. 😞

I guess the good news is that I think I'm better than yesterday, and hopefully even better tomorrow. A new quarter began this week at work and I'm starting it out way behind. Oh well...

And you're not here, which this time is a good thing. Daddy has been sick too but he doesn't seem to be quite as miserable as I am. You know I checked my sats. They haven't gone below 92% so I think I'm good that way. 

With no one but Daddy and me (and the dogs) it's been pretty laid back. Lots of soup, lots of liquids, lots of rest, just trying to get through it. Even going to the cemetery to pick up your things yesterday before mowing was really hard, like physically hard. Emotionally it always tugs at my heart.

And frankly, I'm feeling a bit embarrassed. I mean, you did this All. The. Time. And you didn't really complain. Plus you'd end up with IVs and breathing treatments and often no food. You did like the attention though. I don't think I would. I'm trying to hide away and just get through it. I'm actually hoping I can be back at work on Friday. If tomorrow is as much better than today was from yesterday, it shouldn't be a problem. 

But I'm still not hanging out with Sterling this weekend, or seeing the others. 

Nobody wants this. 

I miss you, Aaron. I came home from work early on Monday and have pretty much just been hanging around the house. Or in bed. And I feel like I'm at loose ends. I stay busy enough during the week that it's not as hard. But still, I'm glad you don't have to deal with this garbage any more. 

I love you so much.

Thanks for being an awesome kid, and blessing us with your life. 

It was truly a blessing to have you here.

My friend's comment keeps echoing through my head.

May his memory be for a blessing.

And it is, you are.

Love,
Mama

"The light that cannot be put out." 

SOFT Conference 2024 

40 Weeks

Dear Aaron,

It's been 40 weeks. 

40 weeks is considered the average gestation for a baby.

Christ spent 40 days in the wilderness

It rained for 40 days while Noah and his family were on the ark (although it was a lot longer before dry land appeared). 

Moses was on Sinai for 40 days and returned with the Commandments. And this was after he spent 40 years in the wilderness himself.

Forty seems to be significant in scripture.

Some have suggested that it symbolizes a testing period. 

Somehow, I don't think my test is over yet. I mean, you're still gone. You're going to stay gone. I haven't dreamed of you for what seems like ages. 

I drove past your school a few times this past week and I got to wondering about last year. Last fall was really hard on you. It seemed I was constantly texting your bus driver that you had a rough night and weren't going to school. Or that you were back in the hospital and weren't going to school.  

You had a really good run of eight weeks over the summer and I thought maybe you would be getting stronger, but then school started, the days got colder and darker, and so did your health. 

I struggle with this time of year anyway, and now the memories of last year intrude. 

I tried to figure out how many days you went to school last year, and I know I'm counting some school days when you were at home anyway because I didn't record those as carefully.  

There weren't very many. 

Three in August, 13 in September, nine in October, four in November, and I think six in December.

Thirty-five days in all. Out of 85 school days total. And like I said, I know I'm counting some that you weren't there for anyway. 

Aaron, I don't really like fall. The days get darker and colder, drearier. Winter I can hunker down more, but fall feels deceptive. It can look warm but still be cold. Or the other way around (sometimes).  And at least in the winter, by the time the snow and cold really get here, the days are beginning to lengthen. Right now it's just shorter and shorter and shorter. 

Kinda struggling here, Aaron. The days keep reminding me of all the time we spent in the hospital, days where I would drive an hour to get to work and then back again to sleep next to you. Lab reports, x-rays, CT scans, and rounds. Sixty-one days in the hospital between when school started and when you left us. Five different admissions. We, you and I, spent most of last fall up at Primary's. 

And you didn't come home the last time. 

I had to do that without you.

I'm still not sure how I managed to walk out and leave you. 

Truely, the hardest thing I have ever, ever had to do, and close behind it was closing your casket, knowing I would not see your face again in my lifetime. 

Oh, Aaron, I'll keep trying but sometimes it's really just, so, hard.

I miss you, miss you so much.

Love, 
Mama

"They say time heals all wounds, but that presumes the source of the grief is finite."

— Cassandra Clare

Catalyst for Change

Dear Aaron,

I talked about you today.

I mean, I guess that's nothing new. I talk about you every day.

But today I got to talk about you at a conference, to a room full of people, about system change. You are a catalyst for change.

So many years ago, Aunt Maurie and I used to play "pioneer." I was somewhat jealous of pioneers. I thought it would be amazing to cross the plains in a covered wagon, to run around, and sleep under the stars each night. We hung blankets and sheets on the sides of the bunkbed but left the end open so we could see to "drive." 

I guess I never thought about all the dust you eat, or the mud sucking at your feet, or the blisters, or the bone jarring ruts. 

Being a pioneer wasn't all fun and games.

Sometimes it's surgeries that others get because you live, but you don't because they didn't do those then. Sometimes losing an antibiotic (or two or three or more) because you've had so many infections they just don't work. Often it's sleeping in a chair that really should never have been given the name "bed." Sometimes it's sleepless nights followed by long days. 

Sometimes it's being part of the teaching process, helping others see the value of a parent's contribution and helping change the narrative. 

And sometimes it just hurt. (Still does.)

But along with the dust and the blisters and the ruts and the mosquitoes ('cause I'm sure there were plenty of them) was endless starry nights, and beautiful sunsets and forever friends.

And we get those, too. You were such a nut, and you brought so much love and light, not only to our lives but to those around us. And you're still teaching people. I have dear, dear friends whose path only crossed with mine because of you.  

Aaron, it is such a privilege to share your journey with others, to help them find their "why." 

What a blessing you were, and are! 

Thank you for being my teacher. I still miss you (always will).

Love,
Mama

"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight."

Kahlil Gibran 

Nine Months...

Dear Aaron,

I feel like I'm drifting, or something...

I'm looking at life as it passes by, but somehow not participating, or numb, or... I don't know.

I mean, I go to work and I think I'm doing good things there. I go to church, and to the temple with Daddy. But I find myself easily distracted, unfocused, and wanting to just leave. Not that there's anywhere else I really want to go, just not where I am.  It's been a long time since I attended the temple with any regularity because I just wasn't comfortable being where no one could reach me the last few years of your life.

Your life...

It was a good one. A really good one.

Fourteen years ago you hit 100 days. 100 days of love and light. And ultimately you blessed us with over 4000 more. 

Now, tomorrow marks nine months since you left.

Nine months...

The average gestation of pregnancy. But there is no joyful arrival to anticipate. At least not on this side of heaven. Instead, it's more time without you. More going through the motions, and I guess the emotions too, except those don't have the color they used to. The world seems so gray.

This week challenged me in other ways. I found myself reliving old memories (yeah, again, no surprise) and sobbing over the lack of future ones.

It's been 39 weeks yesterday, nine months tomorrow. So many more to go before I hold you again.

I miss you.

Love,
Mama

“I was just numb all over, like a dead man walking.”

– Fred Gipson Old Yeller

I Thought I Had Time

Dear Aaron,

I've been cleaning out my closet. You know, all those clothes that I wasn't ready to get rid of, in spite of the fact that they're not my size and/or style any more. Plus the stuff I've just tossed in there to deal with later.

Well, it was time. And mostly, it was just fine, except trying to find the time to do it.

But then I came across a bag...

It was the bag I put things in when we came home. Came home without you.

I found the lights that you were given for your hospital room. The lights that I meant to put up that night but ran out of time before going home to see Daddy on our anniversary. The lights I was too tired to put up when I got back. No problem, I'll just put them up in the morning, but morning never came for you. 

I found the socks I bought because we were always losing socks in the bedding.

I found the leg warmers I ordered because when you came all the way off the sedation we would need something to keep you from pulling your PICC line out. Holding those soft little perfectly new articles of clothing broke me all over again.

They are all still here.

Brand new.

Never worn...

Never used.

And you are not.

I thought I had time.

It truly did not cross my mind that you would leave, not my conscious mind anyway.

I thought I had time.

Today I put out fall flowers and leaves at your grave. I decorated your grave instead of thinking of a Halloween costume and hoping it would be warm enough for you to go out trick-or-treating. 

I thought I had time.

I was wrong.

I miss you so much.

Love,
Mama

"Time, the Heraclitean river — so painfully real to the heart, so unseizable for the brain."

~Percival Arland Ussher 

Numb

Dear Aaron,

I'm not sure how to describe this.

Numb?

Maybe?

Or frozen in time?

You know, while everyone and everything else is moving at breakneck speed?

I mean, I know I'm not frozen in time. I go to work, I see people, I even do my paperwork (necessary evil).

But it often feels like I'm just going through the motions, especially on the weekends. I have so many tasks and projects that need completing, and they just sit there. Weekdays I'm at work where you never were. But on weekends, especially Saturdays, the house echoes in silence. 

This morning Facebook reminded me that a year ago you were overcoming Covid. That's the one I thought would take you, not Flu A.  And yesterday was the 13th, yours and Michael's month birthdays. 

Last December 13th you were in the PICU but (relatively) stable. I remember driving down to work and calculating both yours and Michael's birthdays by month. Doing mental math helped me stay focused. When I got to work, I sent Michael a text wishing him Happy 209 Months. It was 162 months for you. 

That was also the last day I would see a real smile on your face. Ten days later you were gone.

Were you telling us goodby? 

Were you trying to tell us you loved us but you were anxious for the next step?

You know, kinda like a kid at graduation, or moving out to go to college? 

I mean, I guess that's what you did, and I know your siblings were all excited about those milestones, but they come home again!!

38 weeks now, and 37 since we closed your casket for the last time. 

On Wednesday I get to share your story with the surgical team at Primary's, and next Thursday I get to do it again at a medical conference on Family Centered Care. I don't have any idea yet what I'm going to say, but I do love sharing you. It keeps you alive in the hearts of others, and it reminds them of the "why" of their jobs. You were (ARE) so loved, and by so many in the medical world as well. For a kid who only once left his home state, and rarely left the Wasatch Front, you sure made a big impact on the world, especially for kiddos like you and families like ours.

I'll find my way, Aaron. Really I will. 

But I think I will always have a huge Aaron-sized hole in my heart

Love,
Mama

"Grief is a dull ache,

Ready to spring,

tears waiting.

Something always gone."

– Reverend Lori Turner-Otte

Ripples...

Dear Aaron,

Do you have any idea how much you changed things? Policies? Procedures? Lives??

How much you impacted others?

I mean, I don't, not completely, but still...

I was talking about you tonight at a family picnic for the Family Advisory Council and all the things you taught me, and taught others. 

Your life is like the rock thrown into a pond whose ripples go on and on until they touch the shore, and then come back again. 

It's not just your direct influence though. It's those I touch through your life, and those who touch others' lives who learned from you, and on and on and on...

The doctors who saw you live and love and thrive, who then are willing to take a chance on another child when they had been taught that trisomy kiddos wouldn't, couldn't live. The staff who watched as you played. The teachers who saw you academically outgrow your school. 

What a blessing to have had you here in our home, intertwined so intrinsically in our lives. Others watched from more of a distance, but you were here. 

Yeah, sometimes it was hard, I think for you as well as for me. 

But oh, how worth it.

And I would do it again in a heartbeat, even knowing now the pain of your loss. 

Because even with the unbearable ache of your leaving, I cannot imagine not ever knowing you.

I love you, Aaron,

Love,
Mama

 "Given a choice between grief and nothing, I'd choose grief."

- William Faulkner

One Bite at a Time

Dear Aaron,

I sit here in bed as the world slowly turns from night into day again. 

Another week gone, 37 now.

The days are getting shorter; the shadows in the cemetery are longer when I go by.

Does it ever make sense?

I mean, it somehow does get a little easier. 

I don't look for you each time I pass your room anymore, just sometimes. 

I don't wake up worried that I missed an alarm every night, just some of them. 

I distract myself with books, family, shows but you're still there with me, a part of me, always in my mind. 

Last Monday, Daddy and I drove to eastern Utah to see a family who lost their own son. They lived in the neighborhood several years ago and I will always remember his cheeky grin, his infectious toddler laugh which, from looking at pictures, never changed. I took her a stone heart like the one I carry, and she asked how I knew. She had told him that every time she saw a heart, she would think of him. I didn't know, but especially in the early days and weeks, that's what kept me grounded, from flying apart at every moment. I pray it helps bring her comfort too. 

Yesterday, Facebook gave me the gift of a long-ago picture. I forgot about this one, but my heart did not.

I don't remember which of your siblings I bought this elephant for, but it was pretty much ignored. By the time they were big enough to really do much with it, they were moving and grooving, and much too busy exploring other things. But you loved it! In fact, you loved it so much it became real, you know, in a Velveteen Rabbit sort of way. 

They say the way to eat an elephant is one bite at a time. I think you took that to heart. You endured so many, many things over your lifetime, and yet you just kept going as long as you could. I truly believe that you stayed around a lot longer than your frail body wanted to by sheer force of your spirit (and my refusal to give you up). 

And I guess now it's my turn. I will get through this and grow, just like you did, just like eating an elephant...

One bite at a time.

But I have to say, chewing on that leather is just hard.

Love you so much,
Mama

We belong to each other, and we can do hard things.

~Glennon Doyle