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duchennes muscular dystrophy
hello, my name is Rachel, my son is called tom and he is six, he was diagnosed with dmd a year ago. I’m not sure its even sunk in
now, after a year of getting the diagnosis. its been confirmed that I am a carrier, not sure how I feel about that. I did think I didn’t
want any more children but when your faced with news like this, it makes you ask yourself well did I? my only child has this I
might not see him get married, have kids and have grand kids myself. I will be alone. am I selfish to think of these things when it won’t actually be me suffering.
they have told me to be honest with tom about his illness and answer questions he asks, which I do, but he’s six and hasn’t asked
things like is this going to get worse and will I not walk at all, and will I die, he has no idea, I feel like I’m betraying him somehow
will he blame me?Re: duchennes muscular dystrophyYou poor thing, you are going through a raft of emotions, aren’t you. First may I ask if you have been put in touch with your local Care Advisor, these are MD experts and can help with a myriad of ways not just with medical things, they may even know a local family going through the same things as you whom you could talk to and support each other.
I don’t know which area of the country you are from, but you can find their details at this LINK
As you rightly say you are still coming to terms with all the changes that have come about, it does take time to get your head around things … take time …. we have some excellent publications on the main web site and we here will listen and help where we can with any questions you have.
If it helps, I do not blame my parents for my condition, I cannot remember a time when I ever did. I blamed my condition, my muscles, had the typical Aries stubborn tantrums and declared it unfair. I went and go through periods of non-plused-ness and i-am-okay and times of things-are-working but I also go through periods of tiredness from having to deal with it and never having a break from it.
The world views disability so very differently nowadays there are opportunities to be taken full advantage of. Try not to fret about the future, use that energy to make the best of today.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: duchennes muscular dystrophyHi Rachel,
My son is 3 and will be having a muscle biopsy soon to give us more info one what type of muscular dystrophy he has. I recently found out I am a carrier too. My whole family is completely shocked because no one has ever had MD in either side of my family. I also have another son who is 8 months, so obviously he is at a risk now too, but I am just not ready to have him tested…I just need to get through this stage first, I guess. I will not be having anymore children, but it is because I already have my hands full with two. My 3 year old suffers from other issues unrelated to MD, so I really don’t think I could handle anymore. However, I found out about this after the birth of my second son. I can’t imagine my life without him, but I probably also would have questioned if I should have any more or not after having all of the facts. All I can offer is this, give yourself sometime and follow your heart. We are meant to have the children we have. But not having anymore would be understandable too. You have to do what is best for you and your family. I am lucky my son is too young to ask questions right now about all of this, I am not looking forward to the day when I have to start talking to him about his diagnosis. I wish you the best.
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