Support from Others....
It’s hard sometimes to understand why people turn away from us when in actual fact we need them the most, Many families who live with DMD say the same thing that once the diagnosis is made many people tend to turn away from us. I know it’s hard for someone to understand your situation unless they are in it, but I thought it would be common sense to give your family & friends support with such a hard life changing event like your child suffering from an incurable disease??
It’s not that hard to show support, a simple are you Okay would suffice! My Husband & I have not had the support from some people that I thought would be a given, people who have been our lifetime friends who treat us completely different since they found out our son has DMD and that really does hurt, because if the shoe was on the other foot I know that we would give them our unconditional support and do everything in our power to help! I have family members & friends with children that have autism, Down Syndrome etc and we have donated money and supported these causes numerous times & have given these people our support always we really feel for them, these children are all older then our son so the support has always been there.
I Know some people don’t know how to show support or what to say or do, we don’t want you to do anything different or treat us any differently then you always have nothing needs to change we don’t want your sympathy we just want you to be there for us when times are tough and we need someone to talk to.
People have the power to hurt you unintentionally, comments like “he looks fine” are really not what we want to hear instead of saying something that is likely to hurt try asking questions about the disease, educate yourself on the disease learn all you can then you will realize that saying “oh he’s slow to walk” or “he should be talking by now” can be very hurtful and upsetting for us families with children who suffer from DMD, When your child is jumping & climbing doing all those things that most kids do maybe think to yourself how it feels for parents of a child with DMD to watch their child struggle to keep up with your kids, You should Feel lucky and blessed that your child does not struggle with everyday things like getting dressed, going to the toilet, Walking, Jumping, Sleeping, learning etc. Turning away from us is very hurtful but I guess in saying that the one good thing that comes from this that we have found out, you truly do find out who your real friends are and realistically they are the only people I want to surround my son with, people who have empathy and treat us like “Normal People” I don’t want anyone’s sympathy but a little understanding would go a long way!
To all my Family & Friends who give us your unconditional love and support thank you from the bottom of my heart there are so many of you, there are a few who need to be mentioned who I cherish with all my heart who are always there with a kind word and an ear to listen: Joanne Roberts, Sandra Roach, Don Hill, Jessica Donnelly, Monica, Casey & Matt, Kiralea-May, Teagan Ridgeway, Naomi Campbell, Kristi-Lee, Julie Evans, Mel Roberts, Mel Forknall, Marcie Burt, Alanna & Amber Garbutt, Marianne Linke, Bev Roberts, Jodi Herron, Leanne Windslow, Jacky Embery, Klair Bayley, Jamie Linder & so many more people. To All of my DMD online Family you are amazing the support we all give one another is so amazing way too many of you to mention you all, this support is so important to us as a family dealing with DMD.
