I was reading another parents blog about SMA. So many things he said hold true, things I don't even think about often anymore but still hold true and are part of our daily lives. IT TAKES AWAY!
Over the years we have watched VRK1 TAKE AWAY from Ian, even before we knew what IT was...we have watched IT TAKE AWAY. I have watched IT TAKE AWAY from Becca, Brian and I as well as family members and those close to us. You try not to let it take, you put your foot down, yell at it, put up your best effort. Sometimes you realize it is happening other times you don't. When you have a baby you know, you will bathe it, change it, feed it, get up with it in the middle of the night...as the child grows they will do all of that for themselves. We watched Ian start to do all of that and then...IT TAKES AWAY. The trust that he has to put back in you as you begin to do it all for him again and will continue to do as IT TAKES AWAY.
It is isolating for all of us, regardless of how hard you try for it not to be. Out and about, you are still on, that trust is even more evident when we are not in his usual environment. As parents, Brian and I can't "hang" out with others the way others do. We can't leave our children with the other children to play, to do what it is they do. We do what we do...taking care of Ian as IT TAKES AWAY.
Treasure yesterday, dream of tomorrow but live for today.