to many questions not enough answers

How is it our sons can seem like this doesnt bother them? But then one day you watch him and you see everything he cant do but you sit and think its like this every day and hes fine. But this day he cries. I watched my son at a birthday party today, the other kids were playing with water balloons and a pinata. He tried playing both with them he was to weak to hit any candy out of the pinata and then when one of the bigger kids busted it all the other kids got the candy and my son sat under a tree crying because he couldnt bend down to get the candy so he didnt get any. Then when they played water balloons he said his legs were hurting so i told him he could sit down well when he tried to get up a kid hit him with one and he cried because it hurt then they were down to the balloon and he wanted it well the birthday boy gave it to him and he was to weak to even bust the balloon. I have never seen my son give up so easily he is the strongest person i have ever met he is my hero. Yet everyone says im there hero because they dont see how i can deal with this every day. Its been 5 years since he was diagniosed and we are still trying to deal with this but the truth is im getting exhausted and most days i have to force myself to get up in the mornings because i know what i have to face when i do get up. That makes me sound like a horrible mother but my health isnt wonderful and i have to push my issues aside until i deal with him and lately its getting harder. what can i do? does anyone else feel this way? 

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Comment by Andrea Cleary on March 9, 2014 at 11:30am

I don't know what to say Danielle, but I wanted to respond so you know we are hearing you. The birthday party scenario with "normal" kids is always a recipe for frustration. The other kids don't get it, their parents don't get it, no body understands what your boy has to deal with daily. That is his life, and that is why usually he is able to go about things rather content, he knows nothing different than struggle. But at a party it becomes overwhelming, an in-you-face reminder, for you and for him. At least they invite him, because another thing that can start to happen is exclusion, they just don't bother to invite our kids. I even had one mother of Simon's close friend (and a neighbor, so he saw everyone else arrive for the party form the window) tell me they hadn't invited my son because he wouldn't be able to do any of the activities. I explained to her that it would be nice to allow him to decide whether or not he could participate, and also she could have taken the time to choose a few activities he could have done. I have not spoken to this insensitive person since. Maybe you can suggest to parents a couple of games that you know your son can do and is good at, maybe not-physical ones.

I find this journey goes in cycles, and you happen to be on the low right now, but things will swing up soon enough. I guess educating others about Duchenne is the answer, like you have any left over energy for that, lol, i know.


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