We're back in that horrible place with Kieran again. His seizures seem to be closing in on him. He had another tonight. His current medication will be maxed out as of tomorrow and now we have to make some decisions. Another med? Ketogenic Diet? Surgery?
That's why this space has been a little quiet lately. But so many of my friends and members of my community read this, I wanted to share so you can send prayers and hopes for healing our way. I really believe in that. And my intuitive little boy will just know you're all on his side.
I'm trying to be positive but I'm sure you can imagine my fears. This is a panic like nothing I've experienced. I have to remind myself that this has been Kieran's life since he was born and given his initial prognosis, we've had remarkable periods of wellness. But tonight, just hours after another fifteen minute seizure, that seizure-free time seems so long ago. Just when I think I've learned something about all of this, I get the heart knocked out of me.
The other day, Kieran was playing in the mud in our backyard. I was planting my new flower garden. At bedtime, Kieran looked at me and said:
"Something made me really happy today."
"Watching you plant your flowers."
And it's just this amazing feeling knowing that a person who is so fresh, and so new to this earth is studying me so closely. I know that I have to be strong for him. I know he's afraid and I know he's watching me.
When he asked me WHY tonight after his seizure ended, I told him that I didn't know. I told him that his daddy and I would do everything is our power to help him because we're a team.
I don't believe there's a reason for everything. Some things just suck. But I trust that we aren't alone and that's why we'll get through this.
When doors to healing open, we'll have the faith to walk through.