A wave of grief and a moment of joy.

I don’t spend a lot of time thinking about what Ryan can and can’t do. In fact I try very hard not to think about it. Once in a while though, it sneaks up out of the blue and hits me. It  takes me by surprise ,then  grief overcomes me. Last night was one of those times. I was sitting on the couch, minding my own business when my neighbors’ son pulled up into their driveway. I looked out the window and saw that he had a few friends with him. They piled  out and started chasing each other around. He looked so tall, so strong, and it hit me, reality.  He is the same age of Ryan. Their birthdays are only a few days apart. They are both 17, soon to be seniors in high school. I sat and watch him for a few minutes, and then sorrow filled my heart. That is what my son should be doing! That is what he would be doing if it wasn’t for the Duchennes. Reality.

It is times like those that bring to light the reality of what Ryan has lost. At this point, the list for what he cannot do has far exceeded what he can do. It is getting harder and harder for him to have any sense of independence. Today I was watching Ryan as he drove his chair into his room. He reach down to the stand alone air-conditioner, turned it on, then a few minutes later he went back and turned the temperature down. I got to thinking, he does this quite frequently throughout the day. I wanted to cry as I thought about it, watching him do this simple task seemed to bring him so much joy. An air-conditioner? YES! Why? Well, Ryan can control it. He can turn it on and off, he doesn’t have to wait or ask for help, this is one thing he can do, independently!  It may seem like a little thing, it isn’t driving a car like my neighbors son, but it IS something Ryan CAN do and I WILL take it, as small as it might seem, and celebrate it!

Sometimes it is a little thing that can bring a wave of grief, and sometimes it can bring about a moment of  joy. For today I am choosing to see the joy in a little thing that to most  probably seems minuet, but to us we will celebrate it as a small victory of independence for Ryan!