As a teenager, I occasionally ran into situations where someone hurt my feelings. That feeling is so foreign to me now as an adult, but tonight, reading over a medical professionals assessment of Benjamin brought back some of those feelings. I know this may be a hard comparison to understand, but this is how I felt. My feelings were hurt. I also know that this assessment was a professional one of someone only doing their job, but when you read something you are not expecting, it is a hard pill to swallow.
Benjamin’s weakness throughout makes so many physical activities difficult or impossible for him, I really try to focus on his many, many strengths. We all have areas of weakness, and this is how I look at Benjamin’s. Tonight, my heart was shattered as I read over a report that took out one of Benjamin’s stronger points… His vision. We know Benjamin has difficulty tracking and moving his eyes around due to eye muscle weakness, but I have never doubted that Benjamin was able to see me. He mimics what we do, smiles at funny faces, and loves watching “Jake and the Neverland Pirates.” Going through paperwork tonight, I read a recent report mentioning possible cortical blindness from brain damage. First of all, Benjamin has a myopathy, and yes he has a history of hydrocephalus, but his brain should be one of his strong points. Secondly, the report mentioned “processing problems.” This has never been a concern of mine for Benjamin, but I guess we will just…Add it to the list. I realize these are professional opinions and I completely respect them, but what a knife to the heart. Maybe one day I will be able to separate easier from things like this, and focus on just Benjamin, but tonight (or morning…it’s 4:59 am), all I can do is think of ways to prove this wrong.
Today, I received a medal from a close family friend who passed away. The medal is of St. Joseph of Cupertino. St. Joseph was a boy who was unable to hold a job due to his cognitive deficits. St. Joseph in prayer, however, was so close to God that he levitated with only the mention of His name. This is how I picture Benjamin…being lifted up on eagle’s wings leaving all of the ropes that tie him down. Benjamin will continue to prove people wrong, and we will all rejoice.