"Even If" is a story long in the making. If you read this blog I might as well tell you now that it will take time to both write it and read it. In the end I hope that "Even If" becomes part of your story and your life.
It began with a phone call. It was the fall of 1995. I was at home with two toddlers trying to run a home and keep them entertained while their father was at work. I can still remember it like it was just yesterday. Looking back I don't recall who was on the other end of the phone just what was said. My mother was diagnosed with Huntington's Disease. There was no more information just a diagnosis. I remember thinking that if I had never heard of it, it couldn't be that bad.The next day with my boys in tow we went to the public library.
I asked for anything and everything they had on Huntington's Disease. At that time, there wasn't much. I pulled out some big Medical Book and leafed through until I found the name. In order to make this easier to write I will refer to Huntington's Disease as HD. In this book was a fairly short and jarring description. What I read next had me running to the ladies room physically sick. In that moment I learned that Huntington's Disease is incurable, it is fatal and it is genetic.I learned that my mother would die, that we her adult children each had a 50/50% chance of having it passed on genetically from her and that any of our children were also at 50/50% risk as well. Between my siblings and I that immediately put the four of us and four children between us at risk. The good news if there was to be any would be that if one or all of us did not inherit the gene for HD that it meant our children were not at risk as it does not skip a generation. The bad news aside from the obvious was that it would take getting tested to find out. Easy enough right? Wrong? There was so much to consider.
Immediately I felt different. I walked into the library feeling a part of the world as a whole. Suddenly, I felt as though I were in a bubble so-to-speak, that was not of my making. I felt alone in this new found knowledge. It was so frightening. How do you function with this kind of news? How do you keep it together?
Within a few weeks time we would purchase our first home computer. As soon as we had this hooked up and connected to the Internet I found all the information I was lacking and then some. Right away I located an online chat for people who were interested in or involved with Huntington's Disease. It was on AOL. (It has since been discontinued). I began to read anything and everything I could get my hands (or in my case - eyes) on. While there is something to being informed I think at the time that I digested a bit too much information. It was overwhelming to say the least. I had so many questions. I wanted to know more than just medical jargon, I wanted to hear from people who had experience in dealing with HD from day to day.
One of the very first, if not the first person I met was a kind woman named Jean Miller. Jean listened to my concerns, helped to answer questions and guide me to more places that would serve to be a support and literally become a lifeline to me over the next years.
Jean was a woman who was lovingly caring for a daughter who was positive for HD and in the thick of the disease. Kelly was her only child and Jean worked tirelessly to find ways to assist in the care and cure for Kelly. There are not enough words to adequately express what their relationship was like. We all felt like we knew and cared about Kelly because she was such a part of Jean. When Kelly passed away before age 30 it was a life lost far too young. It was also evidence that there are cases of Juvenile Huntington's that proves it doesn't only impact those who are in their 30's and older. In honor of Kelly, Jean would share their story and continue on to help raise awareness and support for a cure. I will share the link to that site here.
When you get to this site make sure to look at the options on the left of the page and click on Jean and Kelly's story.
I would highly encourage you to check out this site. It will touch your heart beyond measure. More than that it will give you an idea of what those with HD and caregivers go through. It also is a story of the incredible love of a mother and daughter. Jean is one of my heroes.
Dearest Jean, I have never forgotten and I shall never forget you and precious Kelly. Love Jva
I met others,Laney, Marcia (Lynn), Pat, Lou, Jerry, Red, and so many others. We became a family. Each of us in different roles. Some at risk, some caregivers and others who tested positive. We helped each other understand a different perspective.
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