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