This last week I gave my first public address on KT Syndrome, it was to the local first responders/ambulance crew. It was surreal. I am around Adam everyday, I often tell people about him and his syndrome, but I never realized that I truly do gloss over the dangers of what he has. That scares me.
It scares me on many levels, the first and foremost is if something were to happen and I wasn’t around, do my friends, family and daycare providers really know what to do? I found out as I was presenting that I really believe they don’t understand. So, I decided to go back to square one. I am writing up directives for him and having them handy for everyone around him. That has put one part of my mind at ease.
The other type of scare is one that I don’t think I can ease, at least completely. That is what WOULD I do if and emergency did happen. I tell myself and everyone that I have come to terms with my son’s syndrome, but have I truly? If I had to fly to Seattle with him and explain his medical condition to doctors and stand firm for his rights and needs could I do it. Honestly I think I will keep saying yes and live with the power of positive thinking. Even if it is a struggle…..
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