Small Things

Having a child with Duchenne there are small things that really can be heartbreaking, things that are not anyone’s fault, and we are not blaming others for sharing their children’s milestones – but it can really bring the reality of our situation to light.

Our boy Kye will be 5 in March next year, old enough to start school, however that will not happen. He is very far behind with developmental delays such as toilet training, speech, counting, alphabet, colour recognition. He is only just ahead for his little brother Jack who is 2. I have many friends with children who were born around the time of Kye, whose children will go to school as normal. I feel sad that our little man is not meeting his milestones, that he has to wait to start school, putting him behind his friends.

We know he is not ready for school, and we accept it. But it is hard. Many people really don’t realize how much Duchenne affects Kye’s life, they see this beautiful little man who seems just like the other kids, they don’t realize the daily struggle our little man has with simple things. Getting up of the floor, walking, running, getting out of his bed, climbing, communicating what he wants which comes with melt downs and massive discord in our house. He doesn’t sleep well, and both my husband and myself are seriously sleep deprived. Kye cannot dress himself, put his own shoes on. He can’t keep up with his little brother. He isn’t able to use a trampoline, climb on playground equipment, climb stairs or jump.

We don’t want sympathy, but we do want understanding, we want our friends and family to understand this journey is a hard one, one that we need support on. We don’t really have anyone who can watch our kids – which really does make life hard. Our 25-year marriage is very strong, but we need time to be a couple, we love our kids, but really do need time to be adults I can’t remember the last time we actually went out of lunch or dinner together just us. Trouble is we never get asked out by anyone, having two little toddlers people tend to only see us as parents; thing is we still like to socialise, and need to.

Just remember people with special needs kids are still people, we still need to have social aspects in our life outside of being parents. Life is hard with kids who require extra care, it’s stressful and depressing at times but it is also rewarding and amazing. Even with all the issues and challenges our boy faces, he is a happy little man, he faces each day with courage. I just want friends and family to realize how much Duchenne impacts all our lives, including Kye’s siblings who I know struggle at times watching their little brother unable to do things many of us take for granted.

We are positive most of the time, but we do have our moments when reality really does bite! I know many other families feel the same, many of us have lost friends and family members who no longer give us time or support since our children’s diagnosis it’s a sad reality for many families with children who require special care.

Sending lots of love and hugs to our Duchenne Community and all families with amazing, courageous kids who face hard challenges everyday of their lives