Grayson will be 3 1/2 in just a few days. It’s hard for me to process this, and not just because he’s getting so old (he’s getting so old!), but because of how drastically different 3 1/2 year old Grayson is from 2 1/2 year old Grayson.
This was Grayson just a year ago, and then today.
Some may not notice the significant change in these images, but the difference to me is startling, crushing. And these are just pictures. This disease just keeps on taking my son’s life, little by little. Sometimes it steals chunks at a time, like that horrible day last April. But most of the time it’s tiny pieces- his thumb sucking, his head control, his ability to roll over easily, and his smile. He still smiles, but not often, and we have to really work for it.
And his eyes. The eyes that used to captivate and sparkle are now sad and tired. Tired of the vomiting, tired of the pain. Tired of hospital stays and so many needle pokes.
I’m tired too. I look at Grayson’s future and much of it looks bleak: more hospital stays, pain and uncertainty for a boy whose body is getting bigger, but less functional. And yet, that future must be what the future is, it has to be. The alternative is too unbearable to wrap my brain and emotions around.
I know I write about this all the time, but this is where I am stuck. I need Grayson’s life to mean something good- for him. I want him to wake up every morning and be glad to be alive, despite his body that can’t lift itself up and violently vomits its stomach contents while his nurse or I hold him tight. I want him to enjoy the sun on his face when we go to the park. I want him to feel secure when he hears the voices of the people he knows, even though he might not be able to see us. And I want him to believe, like I do, that every day, no matter how hard or painful, is worth fighting for.