Hi all, I have a feeling my son Kyle is getting ready to ask me what is going on with him. He was diagnosed at age 5 and he is now 10. We haven't "hidden" anything from him, but we have not sat him down and given him the details either. We've always just answered whatever he asked. He's doing very well with the exception of his height of course - he's not even on the height chart anymore. He knows that we go to the special doctor because of his muscles, but really that's all he has really cared to know, up until now, I think... Twice in the last week, he has gotten very emotional and has told me that he has a question to ask me, but he is scared and doesn't know if he is old enough to know the answer. I can't imagine what else it could be other than, What do I have mom, will I have it forever, and will I die from it. I dread the questions that I know are coming, but I've reassured him that his dad and I are here for him and we will answer any questions he has and that we will always be here for him. He is such a bundle of joy and so full of life that I dread the answers to the questions because I can't imagine him any different than smiling and lighting up every room that he enters. I could really use some advice on how to answer the questions. Thanks much, Donna
This really underscores your belief system so take this with a grain of salt.....
Kyle chose this life. He chose it and us. He chose us because he felt we would be capable to handle everything he would throw at us. He knows he is not going to live as old as everyone else. He knows that 30 years ago a 19 year old DMD patient still living would have been something out of the ordinary. He knows that medical advancements may one day lengthen his life but walking may never happen. Just as boiling water transitions to steam and then condenses back to water the cycle of life and death repeats over and over and over. Death is nothing to be feared and a life challenged by physical hardship requires a special soul to lead it well.
He's definitely a special soul - I think most, if not all of these boys are. Thanks for your feedback.
I have met, through my fund raising efforts and speaking engagements, many DMD kids. Each and every one special to the core. You are most welcome Donna.
Hi, My son is almost 9 and he has dmd as well. A few years back he told me mama all i want for christmas is to be better. Well at the time he was sick so i thought thats what he was talking about so i told him yes baby you will be better by christmas. He looks at me and says my legs will work right i cant wait. It broke my heart when i finally had to tell him that this was a permant thing. At age 8 he is almost always in a wheel chair and things are going down hill for us but the trick is to answer there questions as simple as possible and there is also a video on youtube that is a cartoon to explain dmd to them. hope this helps.
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