Article by Sarah | Duchenne Mum
After my son was diagnosed last June I started following Action Duchenne on social media. I decided to join a Zoom meeting on the topic of how to talk about DMD with your children.
One of the Mums on the call asked a question I was wondering about – how to discuss things with Oscar and his older sister. I decided to be brave and send her a message to let her know I had the same concerns and that my children were similar ages to hers. I then had to leave the call so I wasn’t sure if she had got my message or not.
I am not alone
A few days later I had a WhatsApp message from Lynnette from Action Duchenne asking if I had sent the message and would I like to be in touch with the lady and I said yes. It’s been nice having another person to chat to and ask questions it makes me feel like I am not alone. So far I have asked about things such as bike riding and talking to parents at school! Lynnette has also been part of the chat and shared lots of ideas as a mum who is a bit further down the road and that has been really useful too.
Feeling more positive
The support has made me feel much more positive about life going forward for Oscar and that he can do ‘normal’ things other kids do it might just take a little bit more thought.
It’s helped me to try to live in the moment a bit more and not worry so much about what is coming.
Sarah
Further information
- Watch the recorded session ‘how to talk to your children about Duchenne’ below
- Receive news and updates from Action Duchenne below
- Start a conversation with us. We can offer you the same kind of support as Sarah, just get in touch info@actionduchenne.org.
That word…Hospice
