My Hero

Dear Aaron,

For so many years I expressed gratitude for having you here, trying to figure out Christmas presents, taking care of you while many other parents were decorating graves.

Now I decorate yours and it seems so inadequate. 

Yesterday, Sophie brought me your Grinch. She carried it in and looked at me like, "So where is he?" She was actually being very gentle.  I sat there with it in my hand and traced the three-sizes bigger heart with my finger. 

Your heart was so big, in every way.  I laughed through tears as I told Daddy that had the Grinch's heart really grown three sizes, he would have been in trouble. A heart isn't supposed to be big. It is not good for it to work that hard. But yours did. And it did until it was too much and then slowly, gently, ever so quietly, it stopped.

And you were gone.

It's been 14 years today since the neighborhood woke at 4 in the morning to the sound of a helicopter landing in the street. We bundled you up (it was negative 3* out that morning) and loaded you up. A sweet neighbor up the street waited in the driveway to take me. 

When I got to Primary's, the RT told me he'd heard that your returns were in the single digits. I had no idea what that meant, but for the next six days as we struggled to find vent settings that would support you, every time an RT walked in the room I asked, "What does this number mean? What does it do? What do I want it to say and what do I do when it's different? And how much do I care?"

Talk about a crash course in respiratory therapy.

I found out several years later that the home equipment company had been told this would be a very short staffing. You wouldn't live more than a week or two at most but it was important to us to get you home and so they did. I guess they didn't realize the size of your fight, or the determination I had. You became a beacon of hope, not only for other families but also for hospital staff. 

You have left your mark on this world.

I just still wish you were still here doing so. Since you're not, I try to go forward and do it for you, in your name. I'm joining another committee at the hospital in January. This one is also near and dear to my heart as we work to help children throughout the hospital. 

I do it in your name, for other children, for other families. 

For a child who never spoke a word with his own voice, who never took a step on his own, who never even sat unassisted, you have influenced so many. 

My hero.

Love you, miss you. 

Love,
Mama

"We do not have to rely on memories to recapture the spirit of those we have loved and lost – they live within our souls in some perfect sanctuary which even death cannot destroy."

- Nan Witcomb 

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