|Family at risk: from left to right, Sharon, Renato, Taylor, and Alexa (family photo).
By Sharon Shaffer
My mom, my sister and I watched my dad stumble, fall down stairs and trip on things as if they weren’t even there. The frequency of the occurrences was definitely increasing. My dad, a lieutenant commander in the Navy and the picture of perfection for years, was beginning to have problems on the job. He was taken to several doctors, but no one knew what was wrong. One evening, my dad was watching 60 Minutes on television. They profiled a family in
England on the show. While watching the show, my dad insisted that his mother looked exactly like the lady on television. The subject they were discussing was Huntington’s disease.
Anxious to hear if the mystery would be solved, my dad immediately picked up the phone to ask his father if
Huntington’s had led to his mother’s death. The answer was yes. After a lifetime of lies, my grandfather finally spoke the truth. He had done everything in his power to keep his three sons from knowing about Mom. His sons were denied the chance to plan their lives knowing they had a 50% chance of inheriting HD. They blindly went into marriages and families of their own.
My dad received the official diagnosis from the doctors and life was forever changed for our family. I was thirteen when Dad was diagnosed. My parents came home and tried to explain what Dad had and how it affected our futures. I am pleased to say that they were honest and did not hold anything back. For me, it was hard to grasp and really understand what was to come. Even my parents didn’t understand the full spectrum of the disease. We tried to be there for each other as best we could.
My dad’s HD progressed relatively quickly. In the beginning, when he gave up driving and work, I thought it was very gracious of him. He could have easily resisted and made things very difficult for us. In hindsight, it was a recurring theme over the course of the disease. My dad quickly gave up on anything and everything that was difficult for him, such as reading. Instead of taking things slowly and still being challenged, he checked out.
Even though I lived
Huntington’s everyday, I was in complete denial of the disease and how it affected my future. Roles completely reversed at home. My sister and I cared for my dad while my mom worked evenings. We were parenting our dad in order to keep him safe. His thinking was affected and his decisions irrational. I was always able to cook and clean and meet my dad’s physical needs, but there was never discussion about feelings. I excelled in school and channeled my energy in that direction. I began dating my future husband, Renato, near the end of high school. Renato was extremely accepting of my father, which was very important to me. He didn’t ask me many questions about the disease, but he did understand how it affected my future. In fact, I sheltered him from many of the details of my life at home, like Dad’s failed suicide attempt. As a teenager, I was embarrassed about my dad. I had never seen anything remotely similar in my friends’ families and homes. No one I knew ever heard of Huntington’s disease.
The progression of the disease went through the full cycle. Initially dad was placed in a board and care when he was no longer safe to be home by himself. My sister and I were enrolled in local universities and were working. Neither of us ever felt we could leave home for college. We had to be there to support my mom. I continued to date Renato and we were married four years after high school. My mom walked me down the aisle while my dad was seated in the front. He was so proud.
Marrying Renato seemed so natural. Though I never felt I had options. Who would date, let alone marry, someone with
Huntington’s in her future? Renato always loved me and I felt safe. Renato and I enjoyed married life. We spent weekends boating with friends. All the while, Dad’s HD was progressing steadily and rapidly. I did spend time with my dad, but it was definitely not enough. So much of the burden was on my mom.
An angry decision
In hindsight, our decision to have kids was flawed, due to the total state of denial on both ends. For Renato, it was an emotionally based decision because he banked on the feeling I would never get sick. For me, my decision was full of anger. I wasn’t going to let anyone deny me 15 years of happiness with my child, and I believed they would definitely find the cure by the time my child was in mid-life. Alexa was born in 1991. She has literally been a godsend. I have always felt God was trying to speak to me through her. She has been a lifetime of peace and joy. Those who know her will agree, from the time she was very small she related to everyone and was very in tune to others, especially anyone who was different. My dad was placed in a nursing home when Alexa was 3 weeks old. She grew accustomed to climbing up on Grandpa’s lap, while he was seated in his wheelchair.
Eventually, my dad was transferred to a long-term care facility in northern
California. He was beyond the level of care of the nursing home. It was a difficult transition because of the distance. My mom moved up north to be by his side. My sister and I could only see him every so often. It was Veteran’s Day weekend, November 1994, when we had our final visit. We received a call that he passed away the following January. I never got the chance to tell him I was having another baby.
It was a difficult year for us. My mom had devoted 15 years to taking care of my dad. My sister and I worried constantly how she would do and what would fill her days. There was an enormous hole for all of us. Even though my dad looked like a completely different person at the time of his death, I still wasn’t ready for it to be over – and he was still my dad. I was ridden with guilt for not spending as much time with him as I should have and for being embarrassed about him.
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Our second daughter, Taylor, was born in the fall. I never imagined I had enough space in my heart to love another little girl the way I loved my first child. Once again, I feel
Taylor was sent for the simple reason she makes us stop and genuinely live that particular moment.
Taylor makes us laugh and she is an incredibly affectionate little girl. When she hugs me with all her might, I feel safe. For those brief moments, nothing will harm me or take me away. Our days were full with caring for the family and working. During that time, I was able to focus successfully and only think of HD from time to time. It was always related to how my day went. If it was a clumsy day, then I spent more time wondering if it was the beginning of HD and comparing myself to others. Renato and I didn’t talk about HD very often. It was the gigantic “elephant” in our living room that we walked right by, as if it didn’t exist.
A few years later, my sister decided to have the genetic testing for HD. She was trying to plan a family with her husband. I had mixed feelings about what she was doing, but I knew she had to know. However, deep in my heart, I had this feeling she was going to be okay. Her test results came back negative and we cried like babies. I cried tears I didn’t know I had. What a relief -- and thank you, God! The next difficult issue to deal with was “survivor’s guilt”. She felt terrible knowing she had escaped the disease. Nothing but time can heal that pain.
An agonizing time
Shortly after my sister was tested, HD began to invade more and more of my day. It was continuously on my mind. I was getting older. My kids were definitely getting older. I wanted to be able to talk with them in depth about
Huntington’s while I was healthy. I didn’t want to burden them, with such a heavy load, while they were young if it wasn’t absolutely necessary. I wanted time to be there for them and deal with the news of what would happen to their mom. Renato and I went to see a counselor together to ensure we would be able to cope with positive test results.
I decided to proceed with the testing. I had the blood drawn and waited two weeks for the results. It was an agonizing time for me, but I felt ready for the answer. I had always been convinced I would be the one to walk in my dad’s shoes. My sister was extremely supportive during the process and went with my husband and me to hear the results.
The test came back positive. Renato immediately went numb and was shell-shocked. He was not as prepared for the results as I thought. For a few days following everything seemed to be in slow motion. We put on a good face for the girls and tried to buy ourselves time. I could not begin to share the truth with them while I was still so emotional. I went back to work and found it difficult to focus. Now nothing mattered, everything seemed trivial. How can you get passionate about work or other activities with friends, when there are such serious things in the world? I was able to be honest with my employer about the test results. Ironically, I was finding the more people I shared this with the easier it was for me.
“Tested positive.” Now what?
It’s a challenging fork in the road and I had to choose which path to travel, approximately three years ago. For me, I made a conscious decision to quit a lifetime of running and hiding from Huntington’s disease. I would pull up my bootstraps, learn the latest information and see if I could help change my children’s future. I buried myself in the Internet and joined a support group. The support group process was good for me. It allowed me to talk to people in very similar situations and feel safe. It also had a way of helping me see my progress and how far I had come since my test result.
These things helped lead me to the current direction of my life. I have been taking good care of myself with exercise and supplements. I am a member of the board for the San Diego Chapter of HDSA. We focus on raising money for research. At the moment, research is where the key to my girls’ future lies. I am trying to do everything in my power to ensure the answer to our prayers are not filed away for lack of funding. All of this is not possible without reaching out to others. I have found the past couple of years to be very liberating. Since testing, I feel empowered and in control of my life, instead of hanging on for dear life.
|Enjoying the present, planning for the future: Sharon and family celebrate Taylor's eighth birthday (family photo).
Currently, I keep myself busy with work and I am able to gauge myself against my workload. Sometimes I’m exactly where I want to be. But lately, I really feel the pressures and stresses of my job. I try to understand changes I am going through. I talk to my family and friends about what I’m sensing. I think it’s the HD starting. They consistently attempt to convince me otherwise. They immediately jump in to say they have similar occurrences too, forget things or procrastinate and are not facing HD. I understand where they are coming from, but for me, the occurrences are more frequent than in the past. This time it feels different.
I have spent a lifetime of questioning myself, but never in the realm of my thinking or organization. I feel like I have begun to pull back from family and friends and it’s not natural for me to initiate things. I see my family’s and friends’ frustration with me when I do not communicate enough or socialize as often as they would like. The next few years will be difficult until the symptoms are more visible on the outside.
I refuse to sit idle and wait for the progression to occur. I had the opportunity to learn from my dad. I will keep myself engaged for as long as possible so that I can keep reading with my kids or helping them with projects.
About six months ago, I finally talked to my oldest daughter about HD. Suddenly she is twelve years old. Where did the time go? She has witnessed my involvement with the committees and how I’ve talked about my dad frequently. She understood more and more as she got older. But I needed to make sure none of the crucial pieces to the puzzle were missing. She needed to understand what lies ahead for our family and how this affects her and her sister. She was very calm and was mainly concerned for me. She is very in tune with my feelings and emotions. I told her that no matter what lies ahead, her job is to keep being a kid and always go to school. Her daddy has plenty of support from family and friends, if needed. She has already reached out on her own and started to read books on the subject. I’m so proud of her for not following in my footsteps. I cherish every night when tucking in my precious kids and pray this disease will end with me.