Our son, Adam, is 7. He was diagnosed with DMD when he had just turned 2. Doctors, trips to Cincinnati, "rocket boots", physical therapists, are all he has ever known. He has openly discussed the fact that he has DMD. But tonight was the first time that he cried that he was different. Our hearts just broke with him. He was having leg pain, and started crying, saying that he wished he was "normal". He said he wished he could have 3 wishes, they would be: (1) that he could run as fast as his friends(2) that he could be normal and (3)that he could do everything his friends could do. I felt so inept at my response. My husband and I tried to help him focus on all the things he could do well. His 9 year old brother tried to make him laugh, and told him what a great little brother he was. As long as we have been living in this world of DMD, I would have thought I was better prepared to handle this day. I really feel like I blew it, because I had no words to truly console him.

Any words of advice would be so appreciated. Thank you! Angela

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I'm sending a big hug to you.

Mark and Adam are basically the same age. They are transitioning into a different phase of this disease. They recognize their bodies are different in appearance and strength from their peers. Mark verbalizes some about those differences. I let him vent, he's entitled to it and then I try to use other kids as an example to make him feel better ( i.e., little Johnny wears glasses to make his eyes stronger, or little Joey takes inhalers to help him breath better). The same ole' everybody is different story which helps him to understand he isn't the only kid with problems.

It's heartbreaking Angela, I feel your pain and also realize it's not going to get any better unless something comes soon for our boys. God knows where they are in the 'window of opportunity' for treatments in the pipeline. I think it's great you're keeping the faith and praying for our boys. I'm in a little need of that, myself. I think I'll pick up that book!

I'm glad he awoke in better spirits and I'm sure it had something to do with your interventions.

Thinking about you and your family.

Tina
ps - call anytime.
It was really sad reading how your son feels, there aren't any answers on how to deal with this discussion, but you didnt do anything wrong, its great his brother tried to make him laugh. Humour is a way in which I distract myself, I'm always trying to find the brighter side of things. I wish that I didn't have this (insert big cuss word) awful disease, but theres not much I can do about that, so I concentrate on things I can do, Art, Games, Charity work, and my big mouth lol Some days this disease is such a weight that even I get depressed. All i can say is hang in there, lifes a rollercoaster, but we have an extra carriage.

All the best!
The wierdest thing happened the other night. Mark, our 8-year old was lying on my bed with me and out of his mouth came, "Maybe you could get me a wheelchair and this would make it easier for me for long distances." "I wouldn't use it in school but maybe at a mall or places like that."
Nothing prompted him having this discussion, it just came out of his mouth. Actually, I was a bit stunned by it because like I said we weren't even having a discussion. I think we were watching the televsion. Obviously, he was thinking for a few moments about this before it came blurting out of his mouth. I replied, "ok," and that was the end of the discussion.
Of course I haven't ordered one as of yet but it amazed me how for the past (almost) 5 years I have developed an ulcer worrying over and fearing having this discussion with my son and then how innocently it came out of his very own mouth. Having this discussion still made me sad but It wasn't as painful as I thought it was going to be. Of course, he's not in one yet, and our conversation was a light and quick one but it was a start for the two of us.
Joshua asked the same thing not too long ago so we did get him a stroller. We got a handicap parking pass and everyone close to us collects soda cans and tabs for a wheel chair late on in life. Opening him up to the probabilities instead of the possibilities I think has made some difference to him and to many of his friends. His friends know just as much about the disease as Joshua does.

Naomi
Same exact thing happen to us last few days I was driving with my son soudenly he said to me my cousin is lucky because they find a cure for peanut alllergie,me in two yrs if they don't find a cure I'll be in wheel chair.on my part I didn't know what to say just there is hope son Drs are working hard to find a cure,that same night he repeat the same exact words to his mom then he added that in case him having a wheel chair he want it an electric one!
Hi Angela,
My son is also 7 and was diagnosed almost 2 years ago. One evening a couple of months ago while putting my kids to bed, my daughter said "Mom, everyone at school knows how slow Calvin is". Well that sparked a conversation I didn't feel prepared for and after my son cried over his "stupid muscles" and "wish I was normal" comments I found myself telling him that I have a friend who has the "same muscles" as him. He immediately stopped crying and thrashing his head on his pillow and looked up at me with a growing and enormous smile! He said "really? you mean he's like me?!" I said, "yes and he does the same stretches everyday that you do, takes the same medicine, wears the same nightime boots, has PT, etc just like you do". He was elated and couldn't believe there was another boy "just like him"! I went on to say "actually there are thousands of boys like you, we just havn't met them yet." It was amazing how helpful this information was for him. Now both he and his sister keep asking when we will have our playdate with "my friend". Fortunately, I have connected with a family nearby that is also interested in getting our sons together. I have made it my mission now to try to connect with more families in my area and am coordinating a get together for the young boys and their siblings. My kids are very excited about it. And so am I. Maybe you could try a similiar approach with Adam, let him know there are others like him. I hope this helps.
Cindy
When we go to CInc. I always try and get Daniel together with other DMD boys. I only wish there were more around locally for him to meet but there are just not many around that I have met. It really helps for him to meet and see others like him.
My son is 15. We went through the same thing Angela. It is a heartbreaking situation having to explain to your son that he is different. We just kept explaining that while his muscles don't work well, we pointed out his strengths like being smart,a good friend, good sense of humor. I wish I had better advice than that. Eventually he came to accept his limitations. My heart breaks for every mom who has to sit down and talk to their sons about this. My prayers are with you.
Angela,
I don't have any advice, since my son is 5. But my heart breaks with you, and I just wanted to tell you that you should never say that you blew it. We're all dealing with this the best that we can, you included, and I don't think there really is anything that you can do in that situation besides give him hugs and acknowledge that dmd does indeed suck. I really don't know if I know what the heck I"m talking about, but I have this sense that when my son gets to that point, that I want him to be able to express his pain and frustration without always being talked out of it or denied permission to feel it, if that makes any sense. It sounds like that's exactly what you did, and his brother as well.

Take care,
Mindy
Hi, My name is Donna Gluck I am conducting research on emotions of boys with DMD. Boys aged between 8 -12. My intension is to raise awareness of medical personel, teachers, parents etc. I am reaching out to you because I struggle with this site. I want to get the word out to all parents of boys with DMD. My hope is to collect data that can help all those that want to help...................Thanks for taking the time to read.
PS. I believe by loving Adam, you are not blowing it! But, loving him through it.
Hi Donna,

I would be happy to help with your research project. My son just turned 11 a few weeks ago. Is it possible to do this communication via e-mail instead of by phone?

cheryl

Donna Gluck said:
Hi, My name is Donna Gluck I am conducting research on emotions of boys with DMD. Boys aged between 8 -12. My intension is to raise awareness of medical personel, teachers, parents etc. I am reaching out to you because I struggle with this site. I want to get the word out to all parents of boys with DMD. My hope is to collect data that can help all those that want to help...................Thanks for taking the time to read.
PS. I believe by loving Adam, you are not blowing it! But, loving him through it.
Oh, ps- you can contact anyone at PPMD and they can assist you with working thru this website. If you want to contact any member simply click on their photo, this takes you to their page where you can leave a message.

cheryl cliff said:
Hi Donna,

I would be happy to help with your research project. My son just turned 11 a few weeks ago. Is it possible to do this communication via e-mail instead of by phone?

cheryl

Donna Gluck said:
Hi, My name is Donna Gluck I am conducting research on emotions of boys with DMD. Boys aged between 8 -12. My intension is to raise awareness of medical personel, teachers, parents etc. I am reaching out to you because I struggle with this site. I want to get the word out to all parents of boys with DMD. My hope is to collect data that can help all those that want to help...................Thanks for taking the time to read.
PS. I believe by loving Adam, you are not blowing it! But, loving him through it.

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