Life....... (with Duchenne)
Well our little man is growing up way too fast for my liking, we are off to Sydney for our first clinic visit next month and it’s all a little daunting, Kye will have all kinds of tests run and see the cardiologist…… Every day with our little guy is a joy, he is a happy and contented little man, he struggles at times and fall a bit but he never lets it stop him we are so blessed to have him in our lives.
I feel sad daily seeing how so many families are struggling to come to terms with their children’s diagnosis and I really do wish I could help them. For me I won’t let the disease get me down, being down and depressed will not help my boy at all, there is nothing to be gained from it, Kye has Duchenne no matter what we do this is our reality I would much rather spend our time making every moment in his life count, it’s hard sometimes and I think it has a lot to do with how we as individuals cope with major life changing events in our lives and I don’t judge anyone Duchenne is a journey that is different for everyone.
My husband is a cancer survivor, and his attitude is so great, he knows what it’s like to get a second chance at life and doesn’t waste any time on drama and negative people, he appreciates life and I am so grateful to have him in my life, our 5 kids are lucky to have such an amazing father by their side. Life is a journey for us all, none of us know how much time they have left to live, life is fragile and unpredictable Duchenne is just a part of Kyes destiny, part of our destiny and we have embraced and accepted that which has helped us to be positive about his future and in our attitude to life.
I have recently been accused of being selfish for having Kye knowing he had Duchenne, I don’t agree he is a blessing, we will help Kye to stay positive to strive to reach all his goals even if they seem unattainable, we will not let Duchenne be the centre of our lives Kye will be encouraged to never let this disease get the better of him or stop him from being the person he wants to be.
My advice to nearly diagnosed families is breathe…. I know it’s very overwhelming and unexpected for many, you need to grieve and allow yourself time to come to terms with Duchenne, Learn as much as you can about the disease and join groups on social networks, attend support groups it is so helpful to talk to other families who are also on the Duchenne journey, try not to be overwhelmed by the influx of information and always remember there is research going on constantly and lots of trials taking place there is always hope and we can never give up on ‘hope’. Most importantly I want to say don’t waste time, time is a rare commodity for Duchenne families, cherish every moment you have and make every moment count, make long lasting memories and never live with regret, there are lots of choices that will be put in front of you and there are no right or wrong paths to choose, do what you think is best for your child and your family, what works for one doesn’t necessarily work for everyone.
Love one another and don’t allow negative people to be a part of your life as they will just bring you down, encourage your children to follow their dreams, allow them to dream and don’t be upset when they dream something that you know Duchenne may prevent them from doing.
Don’t wrap your kids in cotton wool, let them experience the same things as other kids who don’t have Duchenne, let them be who they are without Duchenne being an anchor weighing them down. Take time for yourself and never feel guilty for taking a break, don’t feel guilty for shedding tears or feeling overwhelmed, don’t feel guilty for not being able to cope at times Duchenne is a hard journey with lots of ups and downs you will need to be strong you will need other to be strong for you. Just remember the Duchenne community is here for you to encourage, advise, listen and share, without this community many of us would not cope at all.
Love to all the Duchenne Families
