PPMD Community

Dealing with son's sadness about being different

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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Permalink Reply by Donna Gluck on September 2, 2009 at 10:51am

Cheryl,
I am very happy to hear you and your son will be a part of this research! I can email you the 'mother' questions but would have to meet in person with your son. I can send you the consent form; it has information that could help. I am asking boys (DMD) to draw 1 or 2 pictures. Then I will ask him to tell me a story about his pictures and his feelings surrounding being a boy with DMD.

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Permalink Reply by Donna Gluck on September 2, 2009 at 10:53am

Donna Gluck said:

Cheryl,
I am very happy to hear you and your son will be a part of this research! I can email you the 'mother' questions but would have to meet in person with your son. I can send you the consent form; it has information that could help. I am asking boys (DMD) to draw 1 or 2 pictures. Then I will ask him to tell me a story about his pictures and his feelings surrounding being a boy with DMD.

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Permalink Reply by Donna Gluck on September 2, 2009 at 10:57am

Cheryl,
Thank you! I will click pictures from now on! I may just need to take the time to navigate the site.
And, I will come to you. Meaning to your home. A local meeting place. My office (in Downers Grove). Where ever your son and I can sit and he can have privacy to draw and tell me his story. What email address may I use to send you the description and consent forms? Not sure if I can do it through this site. But, I can try............

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Permalink Reply by cheryl cliff on September 2, 2009 at 11:47am

I left you a message at your inbox, this is located on your "page". Just click on inbox.

Donna Gluck said:

Cheryl,
Thank you! I will click pictures from now on! I may just need to take the time to navigate the site.
And, I will come to you. Meaning to your home. A local meeting place. My office (in Downers Grove). Where ever your son and I can sit and he can have privacy to draw and tell me his story. What email address may I use to send you the description and consent forms? Not sure if I can do it through this site. But, I can try............

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Permalink Reply by Donna Gluck on November 25, 2009 at 3:23pm

Cheryl, Are you still interested in helping me with my research? I can come to you. I would need about 1hr with your son. To have him draw a picture then tell me a story about it. You could answer the 5 questions for the mom via email. Please?
Donna