Guest Blogger: Caitlin Maynard
Having Hydrocephalus can be an isolating experience. As a person with Hydrocephalus you are, most likely, the only one in your school who has it and must explain what it is often. It can become frustrating and make you feel like an outsider. I can remember my first Hydrocephalus Conference in 2004, the speaker said to those of us with a shunt, “look around, you are the majority.” I cried. I could not get over that feeling of being “normal.”
I am fortunate, I was raised in a family that did not treat me any differently than my younger brother. I have had forty-eight brain surgeries, however my grandparent, parents, brother, aunts, uncles, and cousins never treated me any differently. I went to school, played sports (when I was healthy), and had chores daily. That is the greatest gift my family could have ever given me, to treat me and my brother as equals. Because of that as an adult I have a strong work ethic and I never let a headache get in my way, because I don’t see myself any different than the person without hydrocephalus.
Throughout my life I have also been fortunate enough to have friends in school and graduate school who, like my family, care for me when I am ill, but do not see my hydrocephalus as a limitation. I have found friends who encourage me when I need it and do not allow me to get overwhelmed.
It is true that having time away from school and sports you cannot be completely the same as your peers, but my parents did their best. My family has rallied around me in many different ways, including starting a road race that is held on Thanksgiving morning, Thanks For Running. My family is willing to start their Thanksgiving Day early to raise funds to find a cure for hydrocephalus. As a family we make this race a part of our holiday tradition and its fun. I am honored that they are willing to give of their time to do this for me and others with hydrocephalus.
Want to create your OWN fundraiser?
The Hydrocephalus Association’s Make Waves for Hydrocephalus – Do It Yourself (DIY) Fundraising allows you to raise awareness and help fund the search to cure hydrocephalus. Through this program, you can create your own fundraising web page and turn your favorite hobby, sport, event or celebration—you name it—into a unique awareness initiative!
Make Waves for Hydrocephalus is for individuals, families, businesses, schools and community groups—anyone who is interested in personalizing a campaign and raising funds for HA.