Muscular Dystrophy

iVillage Member
Registered: 01-16-2005
Muscular Dystrophy
3
Fri, 01-28-2005 - 3:52pm

I am not a mom to a child with muscular dystrophy, but the big sister to one. I now have two beautiful babies of my own (not twins, one 18 months and one 12 weeks).
I just thought that maybe I could be helpful because I have an insiders view.
I was 6 when my sister was born with muscular dystrophy. She is now 18 against all the odds, so I have grown up right beside her and seen all the struggles that she, and my mom, had to go through.
If I can be helpful in anyway feel free to respond to this post or more personally e-mail me at deviate_angel22@hotmail.com
I would also be happy to answer anyone about what it was like to be a sibling to a special needs child.

Christy

iVillage Member
Registered: 03-19-2003
Sat, 01-29-2005 - 3:14pm

Hi Christy and welcome!

 


 



Avatar for mt_happydaze
iVillage Member
Registered: 03-26-2003
Mon, 01-31-2005 - 6:08pm

Hi Christy,
Thanks for your offer! I have a question: was your sister's MD hereditary(sorry if that's dumb, I don't know much about MD)? If it was, or actually, even if it wasn't, were you concerned that your babies would have it? Do you think you were extra worried about having a child with problems since you grew up with that reality? I know that BEFORE I had a child with severe disabilities(born with brain damage=cerebral palsy, severe/profound MR, seizures), I didn't really worry about that possibility beyond the normal concerns of a pregnant mom. When I became pg after her(resulted in a mc), I freaked out because then I KNEW that these things CAN and DO randomly happen to ANYONE. Before Sydney, it only happened to OTHER people. Do you know what I'm trying to say here, LOL! My kids live with the REALITY--they see what this life is like. My 14yo dd says she doesn't want a handicapped child because of how hard it is. Not that anyone wants their baby to be anything buy healthy, but sometimes I worry that she sees this in too negative a light. Maybe she hears me complain too much--yikes, I hope not.

Just wondering how you felt before you had your own children and when you were pregnant?? Hope my question isn't too confusing. Thanks for any thoughts you can share on this! Pam

iVillage Member
Registered: 01-16-2005
Mon, 01-31-2005 - 7:10pm
Hi,
Muscular Dystrophy is supposed to be genetic but both my mom and dad had testing after she was born and they couldn't find it in their genes. But my sister (Heather) has a weird kind, it has never been diagnosed as a specific kind of MD just MD in general.
I was worried about my babies before they were born because I guess there is always that possibility plus my husband had a toddler brother (before my husband was born) that died of lukemia so I worried about that too.
I always knew that I wanted kids. I guess I felt "maternal" towards my sister. I was 6 when she was born.
I guess when she was born I felt like I had to grow up pretty fast because my parents had to deal with so much with her. But my mom tired to include me in some things like her therapy. And she had a machine that she had to be hooked up to at night that would beep if she stopped breathing and my mom let me name it (I called it george lol).
When I was about 14 my mom was pregnant again and I remember at the time I was very less than thrilled because I remembered how awful everything was when my sister was born. But they had a healthy baby boy and I think that made a huge difference to me.
I guess just let your older daughter see how much you love your special needs child but also how much you love her.
The reality is that life with a special needs child is very hard (it still is for my mom and my sister is 18).
Keep up the good work, and feel free to ask any questions if you have more. I am more than happy to be helpful