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