So very normal

My heart is pounding. Maybe it’s the gratuitous amounts of caffeine coursing through my veins. Perhaps it is from carrying Claire’s limp body all of the way across campus to her class after she turned a deep shade of purple. If I am honest it isn’t either of those. I am pretty sure that it is from the massive adrenaline rush that I got when this morning, I felt normal, really, really normal. After what felt like an eternity without it, we got Claire’s eyegaze computer back and running. This morning before school I turned it on to calibrate her eyes to it. As soon as that was done she went straight into demands.  First word, thirsty, she then downed a glass of coconut juice. She then said iPod followed by “Well, I must be going now.” She hates to be late so really this was no surprise, it was simply a very plain and normal thing for a 7 year old to say. “Get my ipod and can we go now” What surprised me was just how overwhelmed I was by how normal Claire is and how normal my whole life is. Not because it is dull. In fact, it is rather exciting and differs greatly from what many experience on a daily basis. In that moment her simple normal response was so profound to me. In that moment I felt normal not because she said what a normal kid would say (although that was the catalyst) but because I know that life is hard and life is good and it is more painful than anyone could have ever imagined. It is this way for everyone, some just don’t know it yet. That is what I have concluded and that thought makes my heart soar, weird I know. For years I have heard people tell me how beautiful Claire is and other such kind things meanwhile all I could think is, you have no idea, the pain this causes and how hard it is. I was wrong. Perhaps some of those that I have come across couldn’t comprehend the hardship, yet.  I don’t know if it makes me a pessimist or an optimist but today I sit here encouraged because I know that everyone will experience great pain, not just me. It doesn’t make me like that Claire has Rett syndrome. It doesn’t take away the fear that I will have to plan her funeral before her prom. It doesn’t take away the hope that I have for all the joy and love that I know will fill days in my future. It does make me feel less alone and today that is what I needed most of all.

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