Changes......

Lately I’ve stated to noticed a difference in the way my boy Kye is walking, it’s just happened kind of suddenly, as we fast approach his 3rd Birthday. It’s obvious to me that there is something wrong now which saddens me a little. They did say onset can be between 3-5 years we just hoped it would be later rather then sooner.

We love our little guy so much and I really don’t want to sound vain or superficial but I hate that he is going to undergo so many changes that will be very evident to others, he will walk funny and fall a lot, if he goes on steroids he will get a moon face & possibly gain weight. He will still be our beautiful boy, but I know with these physical changes will come ridicule and bullying and I really want to protect my boy from this.

We don’t often go out to visit our friends /family or attend parties etc when invited because factors we have to weigh up is, do they have stairs that he will have to climb, I worry about him hurting himself trying to do what all the other kids are doing climbing on things, running etc., I know I cannot protect him from this aspect of his disease but sometimes I really don’t want to put him through these things and that is so sad, sad that he has to deal with this, sad that Duchenne came into our lives over 30 years ago when my brother was diagnosed.

People often ask why he isn’t talking properly, why toilet training is an issue, why he gets up off the floor like he does, why he doesn’t climb on the playground etc… I just wish I didn’t have to continually explain it’s part of his disease, then with that comes a million questions which I answer willingly wanting more people to be aware of DMD but when you have to explain the same things over and over to the same people that just annoys me in this day and age it’s so easy to research any topic you like simple as a Google search I just wish people would listen then go and do some research themselves so they can understand better.

I have many supportive friends and family who really are always there for us, but I do feel a lot of them really don’t understand DMD and the journey that is ahead of our boy, I tell everyone to go google it learn something about it because the more people who are aware of DMD the greater chance we have of finding a cure in his lifetime.

I have noticed in the last couple of weeks a big decline in his walking and running, I’ve noticed him struggle at times and have more falls then usual, I ask myself though if we didn’t know he had DMD would we be picking up on it, I think knowing sometimes is horrible, with my brother we didn’t know until he was diagnosed at 7 years old but looking back now knowing the disease I realize there were signs we just didn’t pick-up on them, I find myself looking and waiting for things to happen, I guess seeing these new symptoms has made it clear there were no discrepancies in the test results, I think somewhere deep down you try to tell yourself maybe they are wrong, sadly it’s become abundantly clear that DMD is and Will be a part of our lives once again, I’d be lying if I didn’t say I was devastated at this realization.

I am not going to let DMD get the better of us, I am not going to let it get us down, I am not going to let these changes hurt us especially little Kye it’s just part our lives and so called normal for the journey ahead, Kye is an amazing beautiful little man who I fall in love with more every day, watching him play with his 15 month old brother Jack is just so uplifting and beautiful to watch, I try not to compare things between them, the differences are noticeable, Jack is going to be his best friend throughout his life I know that all my children will protect & Love Kye and I couldn’t ask for more.

This is the start of many changes to come and it’s daunting to think what will be next, one thing it has given me is the ability to live each day as if there is no tomorrow to take what comes and deal with it the best way we can, one thing for certain I feel blessed to have such a wonderful loving husband by my side and 5 amazing awesome children and a large extended family who will always be there to support us no matter what.

Fellow DMD Families my heart goes out to you all, Change is never easy to accept, sadly acceptance is a part of life and we have no choice but to accept things that are completely out of our control no matter how much we don’t want to. Love to you all.