Tuesday, January 9, 2024


Today I had meetings for the new hospital.

The one I helped design.

The one you signed your name on the support beam for.

The one you will never visit.

But oh, my son, you live on through the lives that will be touched because of you.

I reached out to a mama today because someone told her that Ventavis (iloprost) was not sustainable at home, and I wanted her to know that YES, it was! It's a pain in the butt to get the machine it needs, but it kept you alive, and happy, and (mostly) well for over seven years. 

She reached back and asked if you had passed early in the morning of the 23rd in the PICU. 

She had been next door and woke with the sense that something was wrong, and heard crying. And of course, the room was empty in the morning. I've been in her shoes many times and prayed for families and never been able to connect with them. But she reached out and I'm so grateful. 

Here's the thing, that's a Facebook group I almost never see, and I comment even less often. But I needed that connection and it was made. I find the hand of God is present in my life and it is what makes it possible to go on. 

When I got home from my meetings, I took some things over to your school, including the pens I had made for your teacher and therapists. I was pretty proud of them, and now I'm even more grateful I did it. So I took those over and also some clothes that I don't really have any emotional connection to. It was good to see people. Your principal talked to me about the memorial plaque they're thinking about putting together for all the students who have passed. In your school, there are a LOT. It's just the nature of the community. 

And it was all good. Until I left.

And then it wasn't. 

As I walked out, I started sobbing. 

I went up to the cemetery where I brushed snow off your flowers and stood some back up. I'm not sure why. I mean, we're going to get hit with multiple storms over the next few days. But it felt good to do it, although it was hard to see through the tears. 

I straightened up your bed tonight, although I still haven't washed the sheets. The Christmas lights (that have been up since last year) still come on each night and slowly change back and forth. The shirt you wore after you passed, the one I grabbed on our way out the door because you'd need something to wear when you came home, is on your bed, as is the sign I put in your wheelchair at your funeral. "He Lives, and I shall conquer death." 

I know you will. I know I'll see you again, actually see you, not just the you in my dreams or in pictures.

But oh, right now that seems so very, very far away.

I miss you, my little boy. 

"They say time heals all wounds, but that presumes the source of the grief is finite."       Cassandra Clare

No comments:

Post a Comment