Single and dealing with DMD

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Single and dealing with DMD

This group is for anyone that is or about to be single, and their families with DMD/BMD.

Members: 30
Latest Activity: Feb 13, 2017

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who are you?

Started by Mitch. Last reply by Mitch Jan 8, 2009. 2 Replies

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Comment by KarstensMom on February 4, 2009 at 10:58am
I just wanted to let you guys know that I took your advice about telling people about Karsten. And you were right. People are amazingly supportive. There are a few who avoid the subject all together once I put it out there...but more often than not they just ask a few questions and then we get back to normal conversation. Thanks for the help. :) It actually feels good to just tell people (when it is appropriate of course) rather than feel like I'm hiding something.
Comment by Johanna on January 16, 2009 at 7:30pm
I must say this group is a godsend, so many times I have had to hold back how I have been really feeling on other forums because there are some things only single parents go through. Welcome Holly, we're all in this together. Looking forward to future posts xx
Comment by Tanya Fleming on January 16, 2009 at 5:47pm
Your welcome. Other people just don't understand our issues, but we do and can help one another.

Tanya
Comment by Holly Flavin on January 16, 2009 at 3:25pm
I'm so glad to be able to join this group and know that there are other single parents out that that I can talk to. Thanks Tanya, for starting this group.

Holly
Comment by Tanya Fleming on January 12, 2009 at 2:10pm
I think that is a great thing to be blunt when it calls for it.
Comment by Johanna on January 11, 2009 at 6:32pm
HI all
Yep birthdays are hard, Archie's is this Thursday !!!!! You don't want to but there is always a sense of counting down but it does mean that I make damn sure Archie has the best day ever :) I completely agree it is better being alone than with someone who offers no support and I find that society can not cope with talking about DMD (as well as other life limiting conditions) I keep being told "You can't think like that....... He'll be fine..... Well he's still walking..... You'll get through it etc...." I used to get quite angry but now I feel sorry for people because they don't know what to say. I have been known to be quite blunt about Archie's condition especially when I hear people being ignorant about what it means, it definitely shuts people up.
It has been so good talking to other single parents as it isn't something I've shouted about before. Hoping to share, help and lean on/with you guys soon xx
Comment by KarstensMom on January 9, 2009 at 9:55pm
My immediate family - my parents, brother, and closest friend are really good about dealing with it. However the rest of the family doesn't talk about it or ask me any questions at all. I just let it be. I figure everybody has thier own stuff, no reason to force my stuff onto them, right? Maybe as Karsten gets older and his disease becomes "apparent" things will change. What I find hard is the same thing you do, Johanna - going thru all the emotions alone. Even when I was with my husband I was doing it alone. No one gets why I am sad about his birthday coming up, no one knows that I just cry some nights when I can't hold back my fears any more. I have no idea what the future holds for me, I cannot even imagine right now meeting someone who would be able to deal with not just the disease, but me plus all my baggage! For now I am happier with just the two of us. And oh so thankful for the enormous support of my parents. For now, that is enough.
Comment by Tanya Fleming on January 9, 2009 at 9:04pm
Johanna I understand how you feel, I haven't been physcially alone for to long but emotionally for about 14 years, my childrens father was a great man when I married him and was great to my son Christopher, but he just went down hill when his own son was diagnoised with DMD. I think it is better to be by yourself instead of having someone around you, that you have to always wonder what is wrong, and they never share anything with you. This way the boys and I can have a good positive attitude instead of negative behaviorfrom him. I have the moments you have, however I have never had the chance to attend a conference as of yet, the need to have someone support your feelings and lifestyle would be nice..My family doesn't really show support either, they act like they should never talk about it and when they do it is the feel sorry for me attitude. I don't want anyone to feel sorry for me, just accept me and the boys, just the way we are.
Comment by Johanna on January 9, 2009 at 4:10pm
Hi all
I am Johanna single parent to Archie who is on the verge of turning 6. Archie was diagnosed Sept 2005, I have always been a single parent as Archie's father left me when I was pregnant, he doesn't want anything to do with Archie. Anyway, we are doing just fine, the only times I have found really hard have been conferences, lobbies etc when I see couples together, supporting one another. The other times have been in the evenings when Archie is in bed as I have no-one who knows how I feel about things which is why forums like these are such a godsend. My family are great and very supportive but Archie is my son and they usually cover how they really feel in fear of upsetting me. I've told them I need to see them cry, get angry etc.... because then I know what I am feeling is "normal".
Looking forward to talking to you all soon and sharing stories
Comment by Mitch on January 8, 2009 at 10:59pm
not maybe that is how you should handle it! Good luck =-)
 

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