9 months ago I learned a new word - Duchenne. Since then I have learned many new words, and I am starting to become an expert in a disease, I didn't know existed until this very day.
My son is 4½ years old, and we started to see doctors when he was about 1½ year, because he walked on his toes. We have seen several doctors, but no-one suspected anything serious. Then just by coincidence i read about duchenne - in an old magazine in a waiting room. I read about two brothers with duchenne, and immidiately recognized the sympthoms. Test later showed i am a carrier too, at that time i was 7 months pregnant - it was a girl, thank god.
These past months have been a rollercoaster ride, which i couldn't imagine. No-one can, except for those who have experienced this.
I have been angry - I still am, but i don't know where to adress this anger.
I have been sad ever since, and this dark feeling of sorrow is overwhelming and almost always present. I can't look into my sons beautyful blue eyes without thinking about Duchenne, and what his life will be like. I don't know if things will be like this always - I hope not, because Duchenne is not what my son IS, it is something he HAS. And he is the love of my life - along with his little sister.
Soon after i learned about my son diagnosis, i made a promise - I will fight with all my strength that my son gets as normal a life as possible, and focus on the things he can, not what he cannot do.
There is a saying: You never know how strong you are, until being strong is the only choice you have. This pretty much expresses where I am right now.