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Old 11-14-2012, 08:21 AM   #1
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Julie104 HB User
No one wants to talk about it.

My grandson was diagnosed with duchennes muscular dystrophy 2 months ago. When he was first hospitalized and we were waiting for test results friends and family were calling, sending prayers, giving me encouragement after we found out he was positive every one just stopped talking. If I bring the subject up they quickly change subject or tell me to have faith. Not to offend anyone but facts are facts, there is no cure. Other famoly members have decided that they are just not going to "claim it" there must be some mistake. I can say with all certainy that this is yhe most devastating thing I've ever had to face. Why are people so unwilling to face it or help us with our strong emotions about what is facing our family?

Last edited by Julie104; 11-14-2012 at 08:24 AM. Reason: Duchennes muscular dystrophy

 
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Old 11-14-2012, 08:38 AM   #2
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seawind72 HB User
Re: No one wants to talk about it.

Some people don't know how to handle thing like that and getting bad news I hope they come around and face the facts about him my prays are with you and your family this is robocop wife seawind

 
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Old 11-30-2012, 12:06 AM   #3
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goldeneyes HB User
Re: No one wants to talk about it.

I am hoping I can help you with this one, but it would be helpful if you could tell me what denomination your family members belong to. I would expect the responses you have received from pentecostal or word of faith.
Instead of saying "my grandson has muscular dystrophy" try saying "my grandson has been diagnosed with muscular dystrophy". That has worked better for me. That way you are simply saying what the diagnosis was and not technically speaking md over his life. If they still insist you are speaking md over his life, you can say, "I am not speaking md over his life, I am just telling you what the doctor said."
I am a Christian, and I believe in healing and deliverance, but I have often found that most people who claim you have a lack of faith for not believing in instantaneous healing or delivery haven't had anything that they have needed healed or delivered from.
I hope this is helping. I have gone through this with Myotonic Muscular Dystrophy and Obsessive Compulsive Disorder. Be glad that it's not a mental disorder. Then they would say that the problem was demon posession. I wish I was joking on that, but I'm not.
Please let me know the denomination. Different denominations handle this in different ways.

 
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Old 01-04-2013, 04:38 PM   #4
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just1jan HB User
Re: No one wants to talk about it.

Julie, My heart goes out to you, as the mother of a young man who has lived his life with dignity and fight, if prayer works for you in order to lift your grandson up, great. Miracles happen when God will's them. Our miracle is that my son is still alive, in body, mind AND spirit. No one wants to talk about it because they just don't know what to say about the elephant in the room. They SHOULD be helping you to plan his life with as much emphasis as someone without the disease. The struggles are day to day. I remember getting my son's diagnosis, I cried for exactly 15 minutes, that was when he was sick...I haven't shed a tear since because there was work to do! He is now entering a new stage of the "dragon" called DMD. He lives life with vigor, he is a college graduate, has had a fiance' for 2 years, and does what most 25 year olds do. He LIVES!
I'll pray that you and your grandson, not for a miracle of healing, but for the acceptance of the joy and gifts that he must negotiate. Peace, Jan

 
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Old 01-04-2013, 08:23 PM   #5
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Madison104 HB UserMadison104 HB UserMadison104 HB User
Re: No one wants to talk about it.

I am guessing that right now they are in denial. I know that sounds odd, but grieving does come with stages. A child, even someone's adult child...... being sick, is such a loss. I wonder if you could get some written information from the doctor to address much of this and gently pass it out?
I need to talk, so when others shut down or shut me out, I struggle. A support group in your area would help SO much.

Please know how sorry I am, and that you have my prayers. Keep us posted...
Madison

 
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Old 02-28-2013, 09:05 PM   #6
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sarahJ74 HB User
Re: No one wants to talk about it.

Julie104 I'm sorry to hear. I can say I know how you feel!!

There are certain people who, like you said, will change the subject or walk out of the room when I mention something about my MD.
I think that people don't know what to say and are afraid to say something that will offend you or make you feel bad.
I try not to take it personally but it's hard not to.

 
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