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