Let's face it...life with Kael is hard. We never get a break - he needs up close and personal supervision every minute of every day. We literally have to plan our day around his needs - whether it's offering him 6 different things to try and tempt him to eat, driving around just to get him out of the house, or turning on the tv during a play date because he's had enough. We had so many plans that have changed because of him. We were going to be bi-coastal...6 months in Florida, 6 months in California. But the 5 hour plane trip alone was enough to nix that plan. And taking our kids to Europe or other exotic places? Not a chance. You couldn't pay me enough to risk having Kael in a plane over the ocean. Then there are the really hard things like the daily seizures, watching him fall and injure himself constantly, the hospitalizations, the drugs that make him drunk, the grief at watching this disease eat away at him.
But....believe it or not...Kael, the way he is now, not the way I want him to be or hoped he would be, has been one of the greatest gifts of my life. Whether it's the way he cracks up...hysterically...at a dog barking ferociously as we pass by or how he jumps up in the air, almost in a pike position, and lands hard on his feet, and then waits for the applause to come (he'll do this 20 or 30 times in a row) or the way he screams, "WOW" every single time we pass by one of the hundreds of fountains in our area or the joy he gets from blowing bubbles...endless bubbles...bubbles for hours (I'm not exaggerating) or the sweet way he leans his head in for a kiss and says "Otay?" after each and every little seizure he has (sometimes 50 in a row). When I really think about it...it's even a gift that we get to hold him in our arms, all night long, every night. Now we do that to make sure we are there if he has a seizure in the night, but it is so precious to listen to his breathing and to feel his little hands reaching out to make sure our arms are wrapped around him.
This week another beautiful angel with Dravet Syndrome passed away...Cece Cunningham. She was 3, just like Kael. Sometimes it feels as if these kids names are in a hat, waiting for a giant hand to come and pluck their name out. We never know who is going to be next. I know that we could all die at any moment but it is not the same as knowing that your child has a disease that is working to end his life. In my dark moments, which occur often, I can't help but play the scenario in my head...of finding him gone, trying to revive him, realizing that it's over...it happens so often when I am lying in the dark, listening to him breathe...worrying over every twitch. But then I say, "Jesus, I trust you." Just that. Because the truth is that Kael could be gone before the night is over...and there is nothing I can do about it.
But what I can do is cherish every moment I have with this sweet, crazy little boy who makes my life hard, yes, but so beautiful too.
