10th October marks 3 years living with Duchenne muscular dystrophy
10th October marks the 3 year anniversary of the day Duchenne swooped into our lives.
People often ask me, did you ever know something was different with Samson, did you suspect something was up? And the honest answer is no, I didn’t. I just presumed he was just developing at a different stage to Leo (which he was) and that he would get there in his own time (which he will) and that he was just Samson (which he is!). None of this has changed since the diagnosis, which is strange since our entire world has changed. Samson is still the same little boy and he will always be him, that is the constant in all this.
On the day of the CK level test results, I really couldn’t see past the pain and agony that potentially Samson would have a significantly shortened life and that we would potentially bury our son. Since then, over the past 3 years, I’ve changed my focus away from the possible future and towards the definite now, its interesting how time changes perspective.
Although our fears may become a reality (last month the entire Duchenne community was rocked by the passing of a young lad of 10), it is not a certainty. None of us have the exact foresight to predict our demise, that is part of being mortal. Duchenne, however gives us more insight into the potential shortened future, but it is certainly not a crystal ball. This increased insight may lead us to try to be more present in the now, enjoying the moments when we can and just trying to smile more! But remembering the quote from an adult living with Duchenne that will stick with me, when he said his only regret in life was believing when people told him he wouldn’t live past his teens, he is now late 30s.
The past 3 years I have started my journey to reach a balance between enjoying the now, throwing caution to the wind, staying up late, ignoring the rules, running in the rain, stamping in puddles, ignoring the phone/devices, but also planning for a future, such as making sure Samson has a good education, cleans his teeth, is told off when he needs to be and learns the rules of life the same as anyone else.
In the three years since diagnosis, we have learned parenting skills we never thought we would need in our arsenal. I’ve managed pretty extreme ‘sibs’-type behaviour from Leo and carefully, lovingly calmed him and worked with multi-agencies to manage his ‘nurture’ at school and beyond. We’ve answered the questions about Duchenne, about growing up, we’ve dried the tears, advocated on the children’s behalf, had long meetings as a couple about the kids in our kitchen.
Our family map has changed beyond what we could ever imagine. We’ve gained our little Rosie, our present, gift and light who is now firmly finding her feet and place in our family. At the time of diagnosis we never anticipated adding a third child to our family. As soon as we knew about Samson’s Duchenne, we wanted to fill our family with as much laughter, noise and love as possible. We have so much of all these things to give and we wanted Samson to experience all things, including being a big brother, and we were so so happy to have Rosie come into our lives.
Sometimes, I still feel like a teenager, like I haven’t really ever grown up. But, with all this responsibility on my shoulders. The responsibility of a nearly 40 year old with a big family, full time working and about a million appointments in the diary. Sometimes it feels like too much (see other blog posts!) but actually, reflecting on the last 3 years, I’ve dug down big style and am actually getting on relatively OK now.
It’s such an all-encompassing journey that, as a Duchenne parent, you learn to be this fierce, powerful force of nature that will literally move stone and rock for your kids. Even more than before. I have discovered power in my personality that has actually scared me. Its taken my breath away how strong I can be and how much wrath I can bring when tested. I guess we all have this in us, its just extreme situations which bring them to the fore.
I’ve also learned to be tender, more loving and open-minded. I try so hard to avoid judging people. I try to hear but gently push away any negativity, and have increased my tolerance (except when its involving the kids – see previous paragraph!).
So, as I approach the big 4-0, when I shave my beloved locks to show Samson that it is ok to be different, and today, the 3 year anniversary of Samson’s diagnosis, I feel so lucky to be who I am, to have the family I have and the friends who have stuck to us like glue.
Duchenne is with us but it will not define us.
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