I let Reed stay up a bit tonight and play with his sister. As I work from my office, I could hear his infectious laughter from the other room. He couldn’t settle down for bed and I am wondering if this is the start of something new. Fortunately, I think he just has my cold from last week.
Other than when he spends the night at his Nanna’s (one night per week) I sleep with him in his room.
As you can see, tonight he wore his cowboy hat to bed (this was before he went to visit his sister). When he couldn’t sleep, he went down to (what used to be) mine and Zezee’s bedroom (though my daughter has claimed my spot) and had some fun and fell asleep with his mom and sister. His snoring bothered them so my wife asked me to carry him to his bedroom upstairs. I could feel the warmth of his tired body against me and thought about how much it meant to be with him.
My wife reminded me the other day that it isn’t my job to save him. Rather, my job is to teach and love him and of course she knows I work hard at doing that. Still, how could I forgive myself if I didn’t try to help him.
We read stories about people like John Crowley and think, “why not me?” But for most of us, there just isn’t time. Time is our enemy and the pace of medicine creeps along relative to pace of the disease in our children. By the time anything comes, it will likely be too late for my sweet boy and I know it. That is the toughest pill to swallow of all.