Reflections

Today we had our new little one, Thane Charles, baptized. As I put the Baptismal gown on Thane, I couldn't help but remember Kael's baptism. He was about 1 month old, and we had no idea what loomed ahead. We only had our hopes and dreams...that he would be as smart as his big brother, that he would be happy, and I always cherish the dream that one of my boys will be a priest. Never, never, never in my wildest dreams, would I have imagined that one day, we would be hoping that he made it to the age of five...that he would not lose the ability to walk or talk. It has been such a readjustment (to put it lightly) of my dreams. But I am learning to replace the old dreams with new ones. I'm learning to allow Kael to be who he is...whatever that means...to know that God has amazing and wonderful plans for Kael - even if they are different plans for him that I would ever imagine or pick. Sometimes, I rage at God about Kael's future. When I see other children his age, or even younger, who are carrying on conversations with their parents, my heart breaks all over again...but then I have to just let it go.

Baptism is the marking of a child as one of God's own...a sign of the eternal. And really, that is what this life is - preparation for the eternal. When I consider this...and that Kael's heart is so much closer to heaven than my own, which is so clouded by pride, envy and all of the other vices of this world, I feel a little more at peace. I think someday, when I get to heaven, through the grace of God, I will finally see the gift in all of this suffering. It's a little harder to see here - but Kael is teaching me to look for it.

And so it begins, again...

We are on the hunt...once again...for a med that works for our son. He has had 4 generalized tonic-clonics in the past 6 days, as well as hundreds of myoclonic seizures. Every time we adjust his meds or try something new - we have a "honeymoon period." It usually lasts about a week and then we're right back to where we were. So we're going to raise his Stiripentol - again- and see if that works. It's always a balancing act between gaining control over his seizures and causing a drunken-like stupor that impedes his development. So we'll see. Is going from 4 seizures in 7 days to 2 seizures in 7 days worth having him be a zombie? Probably not - Ugh!!! I hate this disease!! It is so hard to watch him suffer and wonder if this is the day where we start to lose him...and not be able to do a thing about it. It really makes you realize how little you actually can control. And that is where trust comes in - trust that God knows what He is doing. You hear that all of the time - and it sounds so trite -except in moments like these - when it is the minuscule line that keeps you from going over the edge - when there is nothing left but trust.