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