The Boy Who Lived (And Lives)

Dear Aaron,

It's your birthday! Happy Birthday, Little Man!

Oh, I miss you. I can only imagine the celebration you're having. I mean, one of the main goals of earth life is to gain a body, and you did! You did in a marvelous way. Some may think that's a strange thing to say.  After all, while no one's body is perfect, yours had some significant challenges, challenges that made it so even the basics of life needed support.

And yet, your marvelous, perfect spirit was able to shine because of those limitations. 

You showed us how to truly live and love. And I am so grateful.

Today (at least at the moment) the waves of grief are relatively gentle. The lap at my feet, my toes, sometimes splashing higher, but for now, not overwhelming. 

We are being carried, I know we are. Yesterday afternoon, a neighbor came by for a visit. Last night Holli came by as did my sister and a niece. This morning early, a sweet friend left flowers on the porch. And I know so many others are praying for us.

I suspect you are, too. I think you're probably close. Please stay close, wrap us in your love. 

What a blessing it is to be your mother, to know you, to know that you still live, just not here with us. That part will always sting, but I guess it's through pain that growth comes. 

My valiant warrior, my hero, my boy who lived...

I love you. 

Happy Birthday.

Love,
Mama

A trip through 14 years of birthdays.

Goodbye may seem forever,
Farewell is like the end,
But in my heart's a Memory,
And there you'll Always be.

 

I Feel Lost

Dear Aaron,

I just don't even know right now...

I feel lost. 

I keep thinking about how 14 years ago tomorrow I went into labor with you, but you didn't show up until the day after.

I was so afraid, afraid you wouldn't make it.

And to be honest, afraid you would. 

I didn't know how to "do" special needs.

But it turns out, I actually did.

Love.

That's how you do it.

You love.

And I guess that's how I go forward right now, except mingled with that love is pain. 

It's very different than the pain of the c-section. I mean, that was bad, but there were pain killers and so on. There aren't any for this. I just have to feel it, to let it in, and let it out.

It's clean-up week at the cemetery. They leave things up for two weeks after Memorial Day, but then the next week anything that is not permanently attached is removed and discarded. I went on Saturday to make sure I didn't get distracted and forget on Sunday, so your decorations, your temporary stone, are all in the garage.

And your place looks bare, forlorn. I can't even put anything up for your birthday. 

So I guess we'll do what we do for everyone, and "celebrate" on the weekend. Friday night I'll put out the balloons I bought for you. 

You know, two years ago I had the distinct impression that it might be your last birthday with us. It wasn't, but it was the last time we got to celebrate with others. Last year you were in the PICU. You had been so critical just the week before that I simply cried because you were still here. Your nurses helped me get you into your wheelchair for birthday pictures, and gratitude filled me. 

Now this year, well, like I said, I just.  don't.  know.  how.

Love you so much, Aaron.

Miss you so much too. 

Love,
Mama

“Life is full of grief, to exactly the degree we allow ourselves to love other people.”

— Orson Scott Card

Processing

Dear Aaron,

There's so much in that word.

Processing...

I'm training in EMDR this weekend, the second half, and it's pretty intense. 

Most things related to your life bring smiles, and then tears because you're gone. (I still struggle to realize your smile and laughter won't ever be seen again in this world.) But most feelings are okay, even good.

However, there are some sights and sounds that can really set me off.

Most people would think that Lifeflight would be one, or maybe vent or pulse/ox alarms. Both your Lifeflights were okay for me. We got you into a good spot before leaving and they were smooth. And the stupid alarms, well, exposure to them was waaaay overdone. I mean, they were part of the background noise. Most ambulance rides were, too.

Most...

But there were some, a few, where we went lights and sirens. Those were the ones where I put off calling, or didn't realize earlier that you were in trouble. And since you passed, sirens have been very triggering. In the moment, I didn't have time to stop and think about it. I mean, I was bagging, we were pushing meds, we were working to keep you stable, or stable-ish. 

But more and more, sirens have been hard.

So today, because we have to practice in training, and we only have each other to practice on, I figured I'd take advantage and get some free therapy.

Oh, boy...

There were a lot of feelings that came up. It was hard work! 

But Aaron, it worked! I got to where the image of those lights rotating on the jersey barriers, the memory of the sirens, well, they're okay. 

I know you loved me, and love me, and trust me. And the paramedics and me and you, we made a good team. 

And I did what I could with the knowledge and skills and tools I had. 

And I am enough.

I am enough.

So are you.

But still, I miss you. I guess that's okay. 

'Cause I love you.

Love, 
Mama

"Live every moment, laugh every day ... love beyond words" 

Part of You is Still Here

Dear Aaron,

Six more days. Six more days until your birthday? Do you have a big party planned? Is Grandpa Bear there? Nana and Papa? My Grandma and Grandpa? You knew Grandpa Bear here, but not the rest, but somehow I can't imagine you and Papa not being super close. I mean, you share middle names, you're both amazing people, strong, courageous, and oh so full of love.

Oh baby, I miss you so much. 

Today the mail brought tears, both of pain and of love. 

Aunt Liz sent me a beautiful pot with spring bulbs just getting ready to bloom, along with her love especially over this next week.

And the Utah State Government sent a reminder that it's time to renew your handicap placard.  Somehow I don't think you need that anymore. The last ones currently sit in the closet upstairs, with all the rest of your things. 

I remember when I first went to get that. It seemed a little funny to me. I mean, what one month old is  capable of walking 200 yards (or whatever the requirement is)? And obviously that's not why you qualified; you needed oxygen to breathe. At the time though, you used these little cute tiny tanks. It wasn't a big deal, but I figured that way if I needed it, I'd have it for you. And if not, I just wouldn't use it.

Then not even three months later, you acquired a bunch more accessories: a trach and a vent to go along with your oxygen, the suction machine, a pulse/ox, your g-tube and feeding pump, and of course all the back-up emergency supplies as well. Then the wheelchair... 

Now, I carry you in my heart. I use your lunch bag each day for my own lunch at work. A crystal angel hangs from my rear view mirror, a butterfly on the back window, and all my little emotion stuffies sit below the dash, reminding me to lean in and feel all the feels. Many of the name tags from the PICU are on the inside of my closet door. Your hospital gown on the chair in my room; your bib that says "Hope" on my shelf. Gentle reminders of you. I try. Sometimes the pain is overwhelming. Sometimes I feel peace. Always there's a sense of something missing.

Your season paintings still hang in one office while a butterfly wind chime hangs in the other. I think,  it's fitting. I mean, afterall, you brought me to the field. You taught me to meet people where they are, to help them help themselves, to want to listen, lean in, and just be there. You taught me that even in the pain, joy can be found. Even when it's hard, I can take another breath. 

I'm sitting in the hammock in the backyard, thunder rumbles in the distance, and the hummingbirds zip in and out drinking from their feeder. I hear birds and feel the grass on my feet. I'm trying, Aaron, I really am. And I think most of the time, I do okay.

Sometimes I break down, and I suspect that may last until I hold you again in my arms. I keep talking to you in my mind, often while driving. The other day I woke up with dream fragments running through my head. They were fractured enough that I could not grasp them, but it felt happy, calm, peaceful. Were you there? Did you come say, "hi"? 

Miss you kiddo. Love you so, so much.

Love,
Mama

“I know you’re gone but… 

You’re still here, everywhere…”

– Debbie S.

Ten Days Until Your Birthday

Those we love don't go away
They walk beside us every day.
Unseen, unheard, but always near..
Still loved, sill missed, and very dear. 

Dear Aaron,

Ten more days, ten...

Facebook reminds me of old updates, blog posts, and I am grateful. 

But sometimes they make me long for my innocence.

In 2020, four years ago today, I wrote 10 until 10. It was ten days until you were ten years old. I had no idea what was on the horizon. You were healthy, happy, having a great time, learning, growing, teasing...  

It can be seen if you click on the blog title link above. There's even a fun video of the many funny faces you made.

You know, you were a lot like most almost ten year olds.

But most 14 year olds are not gone. Most celebrate with loud noises, friends, lots of sugar, maybe pizza, anyway lots of food 'cause you know, they're 14. 

But you're forever 13 1/2. 

And I find myself crying a whole lot more than I have for a long time. 

A friend sent me a sweet sign and I've put it in the corner garden, where I selected the flowers with you in mind.

Lavender because we would use lavender lotion on you. Pansies because they seem delicate and small but are actually pretty strong and they bring a touch of color and joy to their corner of their world.

Matthew and Kensey leave for Wisconsin tomorrow. Andrew moves out the beginning of August. Michael leaves on his mission the middle of August. And then it will just be me and Daddy. Daddy asked me what we were going to do when it was just us, and I told him that I have no idea...

"When one person is missing the whole world seems empty."

- Pat Schweibert 

I Heard You

Dear Aaron, 

I don't hear your alarms anymore. I mean, I did hear them in my sleep, or when something else would beep, for the first few weeks after you left. But it's been a long time since that happened.

Then last night, I heard you talking. Standing in the kitchen making pizza, I could hear your squeaks and vowel sounds, your almost giggles, your squeals. I paused as it caught my heart, and listened. 

Eventually I realized it was Barrett downstairs, but for those few minutes you were back, here, and my soul was comforted. 

And then it ached all over again. 

I'm still not sure how to go on without you. 

Sometimes it's fine.

Sometimes it's most definitely not.

I pause at your grave and talk to you, and listen for the whisper on the breeze. 

I find myself opening the windows of the car, catching the tweets of the birds. I wait for the whirr of the hummingbird wings on the patio, and the tones of the windchimes.

They all remind me that I am here, and that you were here, and that somewhere, you still are. 

And you will always be a part of me, and me a part of you. 

"There’s no end to my grief journey because there’s no end to my love for you."

- J.S. Golubich 

My "A" Team

Dear Aaron,

Tuesday was Andrew's birthday, your "A Team" sidekick. But true to form, Tuesday was a bit busy. 

Andrew did take the day off, but I didn't get home until after 7 again. I did stop and buy his favorite doughnuts from Walmart. I bought two boxes: one of his favorites and then one for the rest of us. He asked if he could have a second (or third?) from his box and I told him those were his, to do what he wants with him.

His exclamation of surprise reminded me of a little kid at Christmas. His grin was so reminiscent of yours.

He's an awesome young man, and he's been such a great brother for you. He would totally tease you and you would go right back at him. The last picture we have of him holding you in the hospital, so raw, so painful, so full of love was his Facebook profile pic for a long time. 

He is so proud of you.

We are so proud of both of you. 

I'm sure you're very proud of him.

So since Tuesday was kinda crazy, we'll celebrate him today, the other half of our A Team. 

He wears your initial around his neck daily. I suspect that most people think it's for him. It's not. It's for you.

Recently a mom asked how to tell her children that the baby she is carrying won't be here very long. I remember telling your older siblings about you. Each had a different reaction. Andrew was not quite seven at the time. His birthday was just over two weeks before yours. Somehow it didn't make sense in his little six-year-old brain. He would just go on with life, and then usually at least a couple times a week he would pause and look at me and ask, "Why can't babies like ours live very long?" And honestly, most of the time I would just reply, "I don't know." 

But he knew he loved you, he wanted another little brother, and to him, that's pretty much who you were. 

We took you to the Alpine Days parade that year and were hoping to find close parking, mostly to be able to escape if you struggled. It was so hot, and you were so tiny and fragile. So Daddy asked a policeman if there was handicapped parking somewhere, and from the back of the car, Andrew piped up, "Who is handicapped?" 

He didn't see you that way. You were just his brother. 

You have shaped us into the people we are today, much better than we were before.

We love you so much. Thank you for being part of our family.

Miss you.

Love,
Mama

"No individual can a win a game by himself."

- Pele