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