This picture popped up on my computer screen today as I was walking past and the first thing that came to my mind was, oh we were free then. Then I caught my own thoughts, free, free from what. And then i realised this picture is two years ago at my 30th birthday. This was before we had ever heard the word craniosynostosis and knew what it meant. We were free from all that goes with cranio. Denver had never known pain from an operation, never knew to fear Drs and nurses, had never had an x-ray or a ct scan. He had a regular GP not 5 specialist. We were free to love and live normally, we didnt have endless appointments, we didn't belong to support groups, I didn't feel robbed, robbed of being a normal mum with the normal worries, I didn't worry if the pressure in Denvers head was to much for his brain, I didn't worry about him going to school and being able to learn like everyone else, I didn't worry that he wont be able to play contact sport when he grows up, I didnt' worry about feeling like I was neglecting my other children and husband. I didnt worry and I didnt grieve for a normal life. I was free from the grief that comes with cranio, I was free from sleepness nights of worry. I wasnt angry.I wasnt depressed. I wasnt a cranio mum I was just a mum and he was just my son, not my son with cranio, not the one I hold down for appointments.
I was simply free and so was he.
If only i knew then what I know now. I probably wouldnt believe it if anyone told me what would happen, but I would know not to take those moments for granted and think they would last a life time. I could be prepared for the shadow that would come and hover over our family, I would be better prepared for the feeling of empty ness and the feeling of being alone, I would be prepared fro when everyone else would move on and i would still be stuck here in the cranio world.
Two years ago we were free.
