There is just something about that word to me. Hearing it associated with my son feels like someone is putting a dagger straight into my heart. As a mother not ready to accept and deal with the future of what is to come, I do not like that word. To me, using one is taking a step further into this disease. It's a confirmation of the inevitable and a reminder of what is to come. It's as if someone is screaming at me "Your son is handicapped. He isn't like other kids. He isn't normal!".
I'll never forget the first time we took Camden to physical therapy. I wasn't prepared at all. Seeing all those precious kids in wheelchairs, leg braces and so forth. I remember having to race to the car to sob. I didn't want that for Camden, never ever in a million years.
To others, this may seem like no big deal and that I should be grateful he is here and his mind is in tact. Let me tell you, no mother in this place thinks it is no big deal or ok. Comforting words don't help. Knowing this will eventually be his life is not ok. Watching your baby slowly get weaker and weaker...knowing what is to come... IT SUCKS!
My son is loosing his strength so quickly and it just kills me. The one thing that helped some was being able to relate to another Duchenne mom. When all else failed to help my heart, I knew I needed to message her. She got it. She's been there. She understood. She told me her son was close to this age when he started needing a chair for walking long distances to be able to rest and take breaks in. She went through the same feelings and need for denial. She said, with every new stage, it hurts so much. She knew.
For a while I've felt like Camden has been teetering between the early ambulatory phase of MD and moving into the late ambulatory phase. I've noticed the weakness progression and even the change in his walk over the last few weeks. I feel it in his ankles when I stretch him and I see it in his arms. Every time I see his little arms and his shoulder blades protruding through his skin, I cringe and look away to save my soul from shattering. His ability to rise from the floor has regressed as well as his ability to sit up after reclining in a chair. I ask the questions I've asked myself probably a million times each day. How can this be? Why Camden?