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Advice to a healthy brother

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  • March 6, 2012 at 2:58 pm #74299
    Advice to a healthy brother

    Hi Craig

    I’m a currently 24 weeks pregnant and after finding out I was a carrier of Duchenne back in 2002 me and my husband took the risk in trying for a baby. After many tests we found out that we were having a boy that has developed the Duchenne gene. After much thought we decided to continue with the pregnancy. After hearing your story it has made me feel that even though he will have a disability he can still have a full filling life and I know we have made the right decision. My brother also had Duchenne so I have seen it and lived with it but sadly my brother lost his life in 2002. As he is no longer here and i can’t ask him questions as people living with Duchenne know it better than anyone is there any advice you can give to me and my husband and the best way to help my 9 year old son who was born healthy to cope with having a brother with a disability.

    Thanks

    Laura

    lubbie1983
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    March 6, 2012 at 5:49 pm #84803
    Re: Advice to a healthy brother

    Hi Laura

    I have made this a topic in its own right as I don’t think we have had a discussion about this before.

    Congrats on your pregnancy :mrgreen:

    I do not know how relevant or helpful this may be but I have sometimes ued the analogy of sandwich making to describe differences. A child has a favourite sandwich, but i imagine it is made different by Mummy or Daddy or Nana, or when you are out. If it is a ham sandwich, some use mayo, some butter, some use smoked ham or boiled ham, some add lettuce, some add mustard … they are all good sandwiches just made up differently. So baby brother is a ham sandwich without lettuce or mustard, still a tasty sandwich, just made differently.

    When baby grows and your elder son gets older to understand the make up of muscles, then you may be able to explain in more practial ways. My Dad used to say my hydraulics were wonky, he was an mechanical engineer, everything got compared to gears, motors and mechanisms.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
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    March 7, 2012 at 11:10 am #84804
    Re: Advice to a healthy brother

    Hi Laura,

    I’m glad to hear about your pregnancy and that you have given your child a chance at life.

    Regarding your healthy 9 year old son the only advice I can give you is to KEEP HIM INVOLVED WITH ALL DECISIONS REGARDING YOUR NEW CHILD. The other thing is where possible spend quality time alone with the heathy child and explain why the new child needs so much of your time, especially as the child with muscular dystropy gets older.

    Although the specialist muscular dystropy consultants in the UK are generally very good, make shore you research their advice to get all the facts before you make a final decision. Most consultants have a fixed idea of what is best for your child, but as you and your child have to live with consequences make sure you all understand the reasons.

    I hope this is helpful
    Craig

    craigwalter83
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    March 7, 2012 at 1:39 pm #84805
    Re: Advice to a healthy brother

    I managed to find this book at Amazonthatis aimed at child siblings but it may be more to do with brain injured mental health than physical disabilities.

    Views From Our Shoes

    There were one or two title to hel adults prepare a child for a disabled sibling as wel, I tyink your local library may be of help or eBay.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
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