My son, Michael, is 4 years old with BMD. He was diagnosed a year ago. Since he was 3 we told him that God gave him "Special Muscles". He would ask why we were at the "Camp Hospital" for kids and thats what we would say. Also we used that phrase when he would get tired. Michael just went a long with it and never seem to care. Until now. Over the weekend, he was swimming a lot on Sunday with his Grandad. His legs then hurt so bad he could not straighten them when he got out. I picked him up and held him in my lap while I dried him off. He was crying and asked me "the question".....

"Mom..why do my legs hurt so bad?" I told him that "God gave him special muscles". He again asked me, "But why did God give me special muscles and not Ty Ty (his younger brother)." I explained he had Muscular Dytrophy. Again, he asked, "But, why mom?" I was speechless.

I didnt know what to say, I didnt know how to exlpain that. It broke my heart all over again like the day I foound out he had this.

Can some of you give me some ideas on how to explain this to a 4 year old. How to explain why he is this way and not his friends or his brother.

I couldnt find a discussion on this so I decided to start one. Hope this is not a repeat.

-Tamara

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I can't think of a good answer for this one right now, but know my heart broke for you just as much as it did when my son asked the question and my eyes are filled with tears. I can't remember what we said. Hugs and know you are not alone in this "lost feeling"
Wow that's rough. So far my son has accepted that his legs and muscles are different and he needs a little extra help. We assure him that we'll always be there to help him and God is always with him no matter what he faces.
I don't mean this to sound critical, but I'd be careful telling him God gave him special legs, and that he has MD. We don't want him thinking God gave him something bad.
Take care.
i really don't think anyone has a good answer to the why, I know that i just tell my son that i really don't know why. But i do believe that there is a reason for everything and that one day we will understand why. I said eveything that happens to us is like a piece to a big puzzle. every experience, struggle, whether good or bad. and some day when we are in heaven the puzzle will be complete and it will all make since. The reasons why something had to happen will all fit in. I then explained to my son that like when we are putting a puzzle together just one piece alone doesn't look like anything but as we start to fit the pieces together and when we are done we have a beautiful picture and that one piece of the puzzle fits beautifully in the picture and the picture would not have been complete without it.
I know your son is probably too young to understand all that but i guess it helps me to think of it that way.
Such a tough question from such a little guy! Sometimes I think DMD boys have very deep souls.

When asked that question by my son (the why me question) I told him we really don't know, not me or the experts - but almost everyone has something different about themselves, something unique they have to deal with. That also explained why the school bully is a bully - he got short changed with compassion.
Deep souls indeed. I'm convinced from what I've already seen that God has prepared my son and given him the grace to deal with whatever life brings him.
I agree that our boys have deep souls and wonderful smiles. It breaks my heart that any of our boys have this disease and that they ask these very simple questions that just don't have any answers. My Nicolas tells me that he doesn't want this disease or that he hates it. He asks why God gave it to him. He tells me that he doesn't want to grow up because he wants to walk forever. These break my heart and you're story did too.

I tell Nicolas all the usual, that he has sick muscles... that I don't know why he has this disease but we have to have hope we'll find a cure... that we need to beat it.... but that if we don't, that I love him and will be there for him no matter what. I also tell him that no one has a guaranty on life. He knows about death, and I tell him that some people die young and some die old. But it's the experience of life that matters... not how long it is. Because of that, we always make time to do something. We go to little local things, like a Wild West town, or a scenic train ride. We've taken him to the only cave in North America that has a tram run through it (handicap accessible, in Springfield Missouri). If he wants to go to the park, we take time for that, or just to stop and look at flowers and plants.

There is no way that our children who can be so sensitive and sweet, won't break our hearts with these questions. I've read of children who told their parents after they couldn't walk anymore that they just wanted to walk one more time. How do you not choke up or cry when you hear that. It's devastating. But as a mom, I need to be strong for Nicolas and make sure that he sees life as wonderful, and give him wonderful experiences and adventures (even with little money), and make sure that he has quality of life.

Good luck to you!
This question came up in our home when I became pregnant with my third son, my two older sons half brother. My oldest wondered out loud whether the baby would have duchenne, as he and his little brother max did. We didn't find out that baby james did not have dmd until he was a year old. We didn't tell the boys until They asked again, and I was surprised at austins reaction. He was so angry, he told me it wasn't fair, and told me he couldn't be james big brother if he wasn't the same. He asked why. I told him the truth, and I still stand by this reply, to any child who wonders why. I said I don't know. I said I am angry, sad and confused too. I said everyone is different and has different skills and talents , I told austin that everyone has a hard time with something in life, and for him it is his muscles. We still talk about it as he declines physically, he seems ok with it these days. My best advice is be honest, be open to talking, and let your son know that it is ok to be royally pissed about the whole thing sometimes!
Someone on the board with an older son with DMD recently wrote that she asked her son about this very topic. When he was younger and he asked about Duchenne or expressed sad or hopeless feelings about the condition, what did she say to answer him that was right or wrong. I believe he told her that her answers weren't as important as the fact that she was there for him when he expressed those feelings. I get caught up sometimes in rehearsing what I'll say to Max when he's older, but in reality, there is no perfect thing we can say to "fix" their pain. I think just being there as a sounding board is really important.

I feel for all of the moms and dads who have to experience the pain of watching our boys' sadness ...
Thank you for sharing. My heart continually breaks as I read these types of comments, and know they are going to be coming from my son soon (he is also 4).

I am not sure what my son thinks about this yet, as we just encourage him to continue to try when he gets frustrated, and help him when he says he is tired. I did have a moment this weekend with the MDA Marathon, as I was watching it little here and there and they said let's raise money for Muscular Dystrophy. Not realizing how much he knew, he looked at me and said "I have Muscular Dystrophy". He said it in a way like they are doing that for me. I realized then he knows he is special (all my kids are special), but he has this thing that is different. Anyway's, just wanted to share, and keep up the good work, as it is not easy being a parent.
Veronica,

I think this may be the post you are talking about. Her reply did help me feel better.

http://community.parentprojectmd.org/group/teenagersage1318/forum/t...



Veronica E. said:
Someone on the board with an older son with DMD recently wrote that she asked her son about this very topic. When he was younger and he asked about Duchenne or expressed sad or hopeless feelings about the condition, what did she say to answer him that was right or wrong. I believe he told her that her answers weren't as important as the fact that she was there for him when he expressed those feelings. I get caught up sometimes in rehearsing what I'll say to Max when he's older, but in reality, there is no perfect thing we can say to "fix" their pain. I think just being there as a sounding board is really important.

I feel for all of the moms and dads who have to experience the pain of watching our boys' sadness ...

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