how do u stop your heart from breaking

My seven year old son jacob, has been sick for over a week now with bronchitis. We were riding to school one day and he looks over at me and says mama will i be better by christmas. Of course i say yes thinking he was talking about the bronchitis. He then looks at me and says you had whats wrong with me when you were little and you got better. It broke my heart to look at him and say no baby i meant the bronchitis. Of course he looks at me and says OH real sad.

How do you keep from having your heart broke while all the while breaking his? He wants to be like the other kids but he cant be.  He has already lost most muscle in his hips. He cant stand on his heels,he is loosing muscle in shoulders, trunk, and back. Theres only so much i can do for him. Any advice on how to help him deal with the changes that are coming would be greatly appreciated.

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Comment by Brian Denger on December 17, 2012 at 11:36am

Danielle, you face a great challenge and learning how others have dealt with their child struggling with or grieving over a loss in ability may help.  It is also possible what works for one family may not be relevant to your situation.

My two sons have DMD.  They are 18 and 20, so at this point they know much about the disorder and our discussions are more frank.  When they were little my wife and did not avoid discussing their questions and concerns although we made every effort to be sensitive to speak to them in an age appropriate fashion.  When asked about the future we referred to other families we had met with older sons who had DMD as examples of what things may look like and that theses family's sons were doing the things they enjoyed despite needing a wheelchair or other measure of support.  We've also focused on our sons' talents and interests, not to avoid the issues, but as a means to encourage them.  Some boys are much weaker than others, yet most manage to compensate by finding activities that suit their interests and situation.  

No two children are alike, whether affected by DMD or not, and trying to explain to a young boy that he can still do many things may not be the answer he seeks.  It is also a question of balance to not diminish his concerns or discounting the way he feels.  And, in some cases parents may grieve for loss more than a child.  An example may be when a boy is ready for a wheelchair and the parent sees the chair, yet the boy often sees an end to struggling at walking and a regaining a bit of independence being able to move about on his own.

What worked for my family was to encourage our sons to participate in activities and clubs in which they had an interest.  We also open our home to their friends knowing most people's houses aren't accessible.  When they have friends visit, they play video games, build with Legos, draw, listen to music or watch movies.  My sons both enjoyed singing and joined the school chorus.  Boy Scouts were not something they enjoyed, but I know other families whose sons were scouts and some advanced to Eagle Scout.  The trick is in finding things that interest your son that he is able to do either by himself or with friends on a regular basis.  As my sons have gotten older they enjoys chatting with friends on the internet and spend time on Facebook.

Talk with his teacher to learn what resources are available at his school including school clubs and activities. Swimming at the YMCA or horse back riding are things many boys enjoy.  Some schools support these programs which may be something your son would like to try.  Another possibility is getting a small pet or fish for him to care for.  

I hope you find things to keep him busy and interested and realize how hard this can be.

Wishing you the best.

Brian

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