Reality

Escape- hiding from pain- having a semblence of normality- trying to be positive. Reality hits some days and bring things to a screeching halt. The disease hits hard and brings a heavy blow. It is much like an earthquake temor, it shakes everything, it may not do damage this time but one day the big one will come. It is in the back of our minds.

We had some harsh reminders this week. As we have begun to get to know others in the Duchenne community we have seen the progression of others older than Kyle. Then came word that one of the co-writers of the book project I took part in- son died. He was only 14, dmd had struck again. The dose of reality hit us in the face.

Yesterday morning as Jill prepared to go to a meeting at Kyle's school she knew it was going to be difficult. This meeting wasn't about his behavior rather it was about his failing physical health. Discouraged I recieved numerous text from Jill- the school wants Kyle to have velcrow flies on each of pants, they want him to have a "pee can" type bottle. The reality of taking Kyle into the bathroom is a tough and difficult process. No one wants to hurt him or have anyone else get hurt.

We are in the process of making a decision about whether to keep Kyle on his steriod or take him off it ue to his lack of walking. A couple of weeks ago Jill observed that watching someone stop walking is the opposite of someone beginning to walk. From stable to shaky to using a wall to walking around the furniture.

Doses of reality are cold and sharp but we go on. The tremor has shaken but it didn't knock us down.

Pray for us as we live in this new stage of duchenne.