I’m sure some of you, our devoted followers, wonder how we discuss Muscular Dystrophy with Liam.
We approach this conversation much the same way you might discuss sex with a child. You answer their questions, but don’t go further than what they ask. When they are ready for information they will show you.
With Muscular Dystrophy we talk about the ‘Building Blocks’ that we each have. We tell him that everyone has these building blocks known as DNA. Each block makes us unique. It gives Mommy her crazy laugh, it gives Lydia her brilliant personality, it gives Liam his amazing sense of humor and it gives Daddy his computer wiz skills.
We explain that with MD something tweeked when he was first growing. There was nothing that anyone did to cause this to happen. It was not part of a greater plan. No one did anything wrong. It just happens.
Everyone has a building block that they might wish was different, or better, but we do what we can with what he are given. We celebrate the differences, and appreciate the challenges that each person might experience with their Building Blocks.
Sometimes I wonder if things would be harder for him if he had been given a different type of challenge. The world sees his disability, it is right in front of you. People may not know what it feels like to have limited mobility, but they can relate, to a degree. People are also very receptive to his needs. They pull chairs out of the way and open doors. The really good ones speak up when they see an injustice or an inaccessible building, these people are everywhere and I’m so grateful.
There are times when Liam’s questions are met with silence. I am thinking. I am careful to not pass my own assumptions about his disability on to him. There may be times that he may be seen as less than, and I don’t want to be the one to do that to him. Liam will be the one to decide how this disease will contribute to his life, not the other way around.