Progression & Changes
Duchenne is a muscle degenerative disease, meaning as the muscle weaken it progresses. This progress is different for all those with Duchenne. For some family’s they get to face these changes much earlier than others do. It’s heartbreaking, but sadly part of the Duchenne journey.
When we see, these changes occur, it cuts us to our very soul, brings with it apprehension, fear, sadness & grief. Overwhelming emotional turmoil, and disappear seeing our child struggle with everyday tasks, constantly falling, tears of pain and misunderstanding.
How do you tell a toddler what Duchenne is? How do you explain why they can’t keep up with the other children, why they can’t climb on the playground equipment? Our family at this point have told Kye his muscles are weak, and for now that is enough. Like most toddlers he said okay then went back to playing innocently unaware of what the future holds for him.
Changes have come quickly for our boy, falls have become more frequent, and at times he struggles to even walk. It is hard to watch our boy go through these changes, and even though we are aware these changes are a part of Duchenne, we struggle to come to terms with them.
The thing that gets us through is Kye’s vitality for life, he is a happy-go-lucky boy who just loves the world around him. He makes us smile every day, and despite the challenges and struggles we know he will face in the future, we love and cherish every moment we have with him.
It’s made clear often, that so many people do not understand or get what Duchenne means for a family! Normal everyday things your child can do such as run, jump, hug you, go to the toilet unaided, turn the tap on to wash their hands, shower unaided are things that Duchenne kids and adults cannot do… yet so many families have a lack of support from friends & family members. Something that begs the question why? Why is it that Duchene seems to alienate so many people from our lives? I get that people don’t understand Duchenne, that they don’t know how to act or what to say…. Thing is we want you to treat us the same as you always did. Why does Duchenne change that? I know it’s hard to put yourself in our position, and yes we often seem preoccupied with helping our child and fighting for a cure – but is that wrong? Wouldn’t any parent do whatever they could to alleviate their child’s suffering, to save their life?
We do have some very supportive family & friends, and for the most our friends live in another state or overseas, they are other Duchenne families from our vast DMD community – and they are loved and valued by us. It’s great to be a part of such a supportive community that know our struggles. – But, we would like friends outside the Duchenne community too. We don’t want to be segregated into a cultural group, we want to be treated as ‘normal’ people. Not just seen as the parents of a child with Duchenne.
I don’t want to always talk Duchenne. Duchenne does not rule our life… I am still just a woman, a mother, a wife, a unique individual with my own goals, aspirations and opinions. I am happy to listen to others, help others, and support others though their own ups and downs – I am not just about Duchenne. Just once I’d love to get invited to go for lunch with the girls! I’d love to go out with my husband with other couples and feel like we fit in. But in all honesty, we don’t feel like we fit in. We rarely get visitors, or an invite to go out which saddens me. Reality is we have a child with Duchenne, this has not changed who we are!
Changes will continue the Duchenne Journey, and we will continue to deal with them as they come – sometimes we may cope well, other times will be a struggle. One thin will never change - we will never regret our decision to have Kye no matter how hard things get. Kye is a blessing (as are all our children). We have great hope that something will come for Duchenne soon. However, if that hope does not become a reality, at least we can say we have made every moment with Kye count.
Love & Peace to you all. Stay Strong and live each moment as it’s handed to you!
