. . . You are ask to do something and you don't realize how much it is going to affect other people. Such was the case earlier this month when I agreed to go to Washington, D.C. for the Hydrcephalus Association's Rally for Medical Research. This is important to me because there has been no significant research (emphasis added) involving hydrocephalus in fifty (50) years. Hopefully, by the time the rally ends on the evening of September 14th, we will have convinced our elected officials to increase funding for the National Institutes of Health by 2 billion dollars during FY 2018.
About a week or so after I committed to the trip, my wife took ill and I had second thoughts about making the trip. In preparation for the trip, I had been updating my Hydrocephalus education blog and posted the link to a new entry on my Facebook page. At the same time, I ask if I should consider cancelling my trip due to Marylou's health issues. The answer I got was a resounding "no"! I think my sister Darlene's response summed it up best:
"I love you and I'm ecstatic that this opportunity is given to you...Nothing selfish about it...you have earned this trip and I hope you go...probably once in a lifetime thing that most people don't get the chance...take it and let doctors take care of Marylou...love you"
Her comment along with those made by two other long-time friends helped me to realize that this trip was more than just raising awareness about hydrocephalus, I would be a voice for others who have a disability and can't make the journey to Washington. Not only that, but it would send a loud and clear message that those of us with a disability are like a "normal" person if we are given the opportunity to prove ourselves.
