Remembering

I don’t usually write about death. And I don’t particularly like to talk about it. I know it’s a reality of ours. Really, it’s a reality of all of ours but even more so when your child has a life threatening condition. I’m going to let you in on a little secret.

It’s terrifying.

It’s terrifying knowing that your child could get a common illness and then all of a sudden that common illness snowballs into something much more and then they’re gone. I can’t even think about it. But the other day I realized that I think about it far more than I even realize.

I was scrolling through my photos in my phone, wanting to delete some of the “bad” ones before saving them all to my computer. Usually it takes me a good twenty or more shots before getting the perfect “post worthy” photo so I knew I had plenty of blurry, half smile, or looking away photos on my phone. Do you want to know my first thought as I was going to hit the delete button?

Will I want this if he dies?

Just typing that brings tears to my eyes. Just reading the word “dies” makes me want to delete all of this and write something else. I can’t imagine a life without him. I can’t imagine waking up and him not being here. I can’t even think of the void he would leave. I know he could live a very long life but I also know that there is a scary reality when it comes to congenital disorder of glycosylation.

Since our diagnosis far too many children have earned their wings. I always wish I could do more for the families. I wish there was some way that I could ease their pain or help in some way. I think about these kids often. I picture their beautiful smiling faces all the time; I won’t forget them. And I guess that’s something that I can do. Never forget them.

I have started running and decided to dedicate each run to a CDG angel,  it’s much harder to run with tears streaming down your face but I feel like I have to.  I know I would want people to remember every single amazing thing about our son if he wasn’t here anymore; his crazy hair, irreplaceable grin, and the touch of his soft skin. I know that I do, I know that even though the photos may not be perfect I’m keeping them. The half grins. The tears. The you-can’t-be-taking-another-photo looks. All of them. I’m keeping them.

I can’t ease the pain for other families. But I can remember their children. That’s a promise I can keep.