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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Does I love you help? I am crying with you reading this. We really need to get just Adam and Seph together...that way they can be normal and do the same things together and for that brief time they will be just like any other boy with each other.
Not that it matters, but do you know what brought this on tonight?
Thank God he has such a great family.
Lori Ware said:
Does I love you help? I am crying with you reading this. We really need to get just Adam and Seph together...that way they can be normal and do the same things together and for that brief time they will be just like any other boy with each other.
Not that it matters, but do you know what brought this on tonight?
I think that he was playing hard today and just coudn't keep up with all the boys on our street. He was really tired, and he was in pain. His calves felt very tight, and he had a hard time walking.
Angela I am so sorry. I don't think we are ever prepared. Nicholas asked tonight why he had to wear his boots. Who knows hat goes through their sweet minds. I hope Adam is feeling better. You and Drew also.

Angela Malone said:
I think that he was playing hard today and just coudn't keep up with all the boys on our street. He was really tired, and he was in pain. His calves felt very tight, and he had a hard time walking.
Oh Angela, I'm so sorry Adam feels "different"..... he's SO VERY SPECIAL AND ADORABLE. My heart broke when I read your post. I think you & Drew handled the situation with love and compassion and putting the focus on his strengths was paramount. How sweet of Dylan to pitch in. Adam is lucky to have such a loving family. I wish you lived closer to us so Adam and Nicholas could grow up together. I don't have any words of wisdom but you can count on me to continue to keep all the Malones in my prayers.
Angela you didn't blow it, you did the best you could and his brother for his age did what he thought best for his little brother ( what a special brother ), the Duchenne Journey as I like to call it, it is a very hard journey, it will lead you to many pathes as you just were on with your son, we all do the best with what instructions were given to us when we were lead to this journey ( with somehow we all think there is such a manuel of instructions, but there isn't ).....all any of us parents who are further down this journey road can tell you.....is that you aren't alone, we know what you are going thru and our hearts ache with you and our thoughts and prayers are with your family, just know to keep busy without burning yourselves out, stay active in the public, keep amonsgt people who care and want to help, I am sure other parents can continue to add to this short list when they add a reply to your discussion as you will have touched so many hearts here on PPMD.
I will leave you here with knowing when I lay my head down on my pillow here in alittle while, that your family will be in my thoughts and prayers.

Cheryl
I'm VERY new at this.... My son is 2, and was diagnosed less than a month ago. So, my experience does not come close to yours, Angela. This is one thought....Let Adam be in the moment, at least for awhile. Let him feel his sadness. That seems very normal to me, and healthy, that he would feel sadness. Empathize with him.... "Yes, I know you wish you could run as fast as your friends, be 'normal', ....." Later he can think about the things he can do well. Maybe you did empathize and let him feel whatever he was feeling at that time. I know you have a lot of courage dealing with DMD and I'm sure your son knows this in his heart. Thank you for sharing this painful situation. It helps me to think about this in advance.
You put me into tears too! I know it will be our turn soon. Joshua is 6 now. The kids at school are starting to notice now. I think that if you were me, I wouldn't have done anything different. I would probably have been rendered speechless. I don't know what to say now and Adam isn't even my son, yet the connection between every child and every parent is overwhelming on this message board. Like Tess said though, it helps us all who haven't been there yet, to think about this day now. Take care.

Naomi
Tess said:
This is one thought....Let Adam be in the moment, at least for awhile. Let him feel his sadness. That seems very normal to me, and healthy, that he would feel sadness. Empathize with him.... "Yes, I know you wish you could run as fast as your friends, be 'normal', ....." Later he can think about the things he can do well. Maybe you did empathize and let him feel whatever he was feeling at that time. I know you have a lot of courage dealing with DMD and I'm sure your son knows this in his heart. Thank you for sharing this painful situation. It helps me to think about this in advance.

It really touched my heart that your little boy's brother helped make him feel better! Sounds like you are great parents raising a very loving family. I just wanted to second what Tess said. I am really new to this too (my baby isn't even one yet), so feel free to disregard this, but I recently saw an Oprah episode with very overweight teens. Long story short, a couple of therapists were leading an intervention to help these teenagers who were in so much pain, felt different, etc. The therapist said the best thing a parent can do is "hold space" for their child, listen, empathize and let them feel what they feel. As parents, our first instinct when our child is hurting (I know it's mine) is to try to make them happy and take away their pain. But sometimes we just can't make it go away, so the best thing is to let them get those emotions out. That really stuck with me, and I'm trying to change the way I interact with my daughter when she's upset. Please don't think I'm criticizing in the least -- just thought I'd share what I learned from that program. I dread the day when Max starts asking these questions, and unfortunately, my daughter is already asking things that break my heart.
Angela,

My heart is breaking for you and your family. I dread that moment. My son is 6 and hasn't mentioned anything about being different. He does realize that he doesn't run as fast as others, but hasn't been emotional. I don't know where your faith stands, but let him know that God made everyone special and different in their own way. Some children wear glasses, hearing aids, may have ADHD or another disorder and so on. Accentuate his positives and let him know about the things that he's good at. Is he involved in any activities. Brandon takes horse back riding lessons and he swims. I'll pray for you tonight.

Hugs,
Julie
Thank you so much, all of you. Today has been a very emotional day, but thankfully, my sweet little man got up this morning, seemed to feel great and went to school. He acted as if nothing ever happened. A sweet friend commented on Adam's caringbridge site about kids being so resilient. That really is true. I know more conversations like this will unfortunately come, and I hope that this will enable me to be more prepared for the next one.

I am re-reading a book right now that is so on point with everything that is going on in our lives, not just with our precious son. It is called The Red Sea Rules by Robert Morgan. The by line of the book reads"the same God who led you in will lead you out." We pray every day for a cure for ALL the boys, and I know that one day that cure will come. As all of you know, it is just so hard when I can't control this, take the pain away from him, shelter him from this storm. I am so sorry that any of us have to live with this, but am so thankful that we all have each other to bear each other's burdons. Your comments have been so comforting to me today. Thank you so very much...Angela

Julie Hathaway said:
Angela,

My heart is breaking for you and your family. I dread that moment. My son is 6 and hasn't mentioned anything about being different. He does realize that he doesn't run as fast as others, but hasn't been emotional. I don't know where your faith stands, but let him know that God made everyone special and different in their own way. Some children wear glasses, hearing aids, may have ADHD or another disorder and so on. Accentuate his positives and let him know about the things that he's good at. Is he involved in any activities. Brandon takes horse back riding lessons and he swims. I'll pray for you tonight.

Hugs,
Julie

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