I guess some quick background would help first. My son turned 14 in Aug. Who knows why but he is doing very well for a boy with dmd for his age. He is still waking, uses a scooter in school, and his travel chair for distance. Last night after getting him to bed I was sitting watching tv. He yelled "mom" from the other room. It sounded kind of strange so I thought geez what's wrong. I went in and he asked if I could help him get his shirt untucked from his pajama bottoms. He then said " I can't do anything, I can't even get my shirt out of my pants by myself". I didn't know what to say, I just bent down and held him for a time. Of course a dozen things were going through my brain about what I should be saying or doing. Do I say " oh its alright, or something like well look at all the stuff you can do blah, blah blah, or tell him that I am there to help him. Does he want to hear all that? What does he need or even want to hear? I wanted to make him feel better but what on earth would I say that would make it better? Of course I'm also thinking as I'm holding him that this is one of many of these times that will come along the way. One of those moments that have come many times before, just slightly different. It just hurts so much sometimes. So after I held him for a bit I left and went in the other room and cried quietly, and thought about what I should have done different.
Thanks for listening,