I found this picture recently .That's me, standing there holding my sons clothes. Cooper is lying there on the MRI table. The picture was taken 3 years ago. Its amazing how much has changed and how much things have stayed the same. Once in remission your suppose to be all done ...right. This is the cruel joke. Once done with treatment we are suppose to return to normal. Cooper is suppose to be a normal 10yr old. The only sign of his brain tumor is the scar that is most of the time hidden by hair.
His brothers are to return to chasing balls, going to school and playing with their big brother. His parents are to return to work, the task of parenting and being mates once again. Never once during the time I prayed again and again for remission did I think that the time in the hospital would be the easy part. I never thought I would long for support, and the assurance of doctors, nurses and others.
I continued to be confused by the terms of neuropsychology evals, long term prognosis's and outcomes. I found myself on a slippery slope between looking at my son as a patient and looking at him as a normal kid. I forget often about the long term damage, the need of retraining and the lack of flexibility. I struggle with the fear of the of the unknown, the unthinkable, yet tangible. Like grief, the pain is always there. Its a open wound that has scabbed over . The pain isn't as sharp and allows the body to move on.
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