- CureHD Foundation -
Dedicated to funding a cure for Huntington's Disease.


Robert Bishop
Introduction
HD family tree
Why I do this
Family photos

What is HD?
Definition
The HD secret
How many have HD
The cruelest illness

The HD nightmare
My experience
Other experiences

HD research
Hope for a cure
North America

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Make a donation
Contact the media
Ask legislators...

News & events
Articles & stories
I need your help

Contact info
CureHD Foundation
CureHD sponsors
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Content © 1999-2009
CureHD Foundation
All Rights Reserved.

www.curehd.org

Several years ago...
Several years ago, my life was turned completely upside down. One moment I was married, had children, lived in a nice house, ran a successful software company, went to church... I was a reasonably happy guy. The next moment, I'm living a nightmare. My wife, Amy, has been diagnosed with a genetic terminal brain disorder. Her behavior becomes completely unpredictable. As a result, I'm compelled to go to court to have her declared incompetent so that I can legally move her out of our home. (Even with my mother living with us for over 18 months, I was unable to protect the children from repeated verbal, emotional, and physical abuse.)

To make matters worse, I find that our five children are 50% at-risk to suffer the same fate as their mother. Can you imagine knowing you had a 50% chance of suffering 15-20 years while the nerve cells in your brain slowly died? Can you imagine losing everything that is you (from your personality and intelligence to your ability to walk and speak) while still young?

To add insult to injury, our family finances were suddenly in the toilet. Somehow our savings of approximately $75,000 had disappeared, an empty $100,000 line of credit was fully drawn, and never before seen credit cards with balances of $25,000 were discovered. (I never found where all the money went... for all I know, my wife buried it in the back yard during one of her delusional episodes!) At about this same time, our health insurance provider walked away leaving a mountain of unpaid medical bills and the company I had founded years earlier was practically bankrupt. I felt completely helpless as I saw everything that I had worked so hard to build and protect systematically destroyed. It got to the point that I wondered what else could possibly go wrong? Eventually, Amy and I were divorced. This was the only option that would allow me to protect and provide for our children as well as ensure that Amy's needs were met. For what it's worth, this is what Amy asked of me during one of her more lucid moments before she was formally diagnosed with HD. Still, this was the hardest thing I have ever done.

Light in a tunnel of darkness...
Other than the children, the only light in this seemingly endless tunnel of darkness was the new nanny, Anne-Marie. She had previously worked in Boston as a nanny and I was very impressed with the way she interacted with the children (especially how the children warmed to her). Despite years of abuse, I was witness to an almost overnight transformation (especially with the younger children). I could tell that she loved them and that they loved her. Some criticized me saying that she was not the children's mother and that I shouldn't allow her to act as such. Nevertheless, I refused to believe that her loving the children could be a bad thing for them (especially since they had been so starved for love by a mother who was ill).

It was never a job...
Anne-Marie never treated her work as a job. In fact, she refused to accept payment for almost 10 months because she knew I didn't really have the money. She would say, "you can pay me later when things get better." I was amazed that she would continue to put her own life on hold to help me with my children.

The first miracle...
I could never have orchestrated the events that led to the sale of the company I had founded. Suddenly, the technology we'd developed became strategic to a particular market segment. Not many months later, the number one company in that segment acquired our struggling company. Stock that couldn't purchase a Big Mac became worth a lot of money.

Life without a Mom...again!
After the sale of the company I was able to payoff the considerable debt and concentrate on spending more time with the children (as well as establishing CureHD Foundation to raise awareness and funds to research a cure for this damnable disease). Since the youngest was now in pre-school and I could work from home, Anne-Marie decided it was time for her to leave. She moved back to Boston to pursue a relationship with a young man she'd met there several years earlier. Her leaving was not only hard for the kids but also for their father. Despite our age difference (16 years), we had become the best of friends.

Home alone...
As I approached my 40th birthday, I found myself a single man with five kids. My life wasn't nearly what I thought it would be. When I was in college I had three goals. The first (family) was to get married and have a family. The second (career) was to build a net worth of one million dollars by age 30 and retire from having to go to work by age 35. The third (personal) was to be on the David Letterman show (not as a stupid human). It's interesting how life circumstance can bring perspective to what's really important.

I couldn't see my way forward alone (i.e., without a mother for the children and a companion for me). I told God that I would do my part (i.e., go on blind dates, attend singles gatherings, etc.) if He would put someone in my path who would love me as my best friend and who would love the children as her own. Over the next year I had dozens of "I have someone that I'd like you to meet" experiences and each time I found myself comparing them to Anne-Marie. I wondered, "What’s up with me?"

Dad, go get Mom...
One day on my way back from picking up the two youngest kids from pre-school, Andrew said, "Dad, go on an airplane to Boston right now and bring back our Mom!" Hannah then blurted out, "He can't, she has a boyfriend!" I couldn’t hold back the tears... I knew what they were feeling.

Craig’s struggle...
Shortly thereafter, Craig (my eldest son) was very rude to a woman that I had been dating for a few months and who I felt I might conceivably marry some day. Later that evening I asked him why he would ever treat someone that way. His response was "Dad, I don't want you to ever re-marry." I responded, "Why would you say this? Don't you think it would be a good idea for you kids to have a mother and for me to have someone to share my life with?" He replied, "She'll just leave us like Mom did and Anne-Marie did. We just can't trust them anymore."

I told Craig that his mother had left because she got sick and couldn't live at home and that Anne-Marie had left because she needed to have a family of her own. I could tell how deeply wounded he was so I told him to write down his feelings in an email to Anne-Marie. He promptly went down to the computer and started to write. In his message, he expressed the tender feelings of his heart. Towards the end he wrote, "Anne-Marie, I hope that you will be happy with the man that you marry and the children that you have because I would give a hundred billion dollars if you knocked on our door and said you wanted to be my mother."

Rebecca’s plea...
One night Rebecca (my eldest) assembled the kids together to write letters to Santa Claus. I chuckled as I read what each child had written starting with the youngest, Hannah. When I got to Rebecca's letter, she had written "Dear Santa, I've been a very good girl this year. Here are just a few things that I'd like for Christmas. Number 1: A Mother..." I turned to Rebecca and said, "I'm doing the best that I can." She responded, "I know Dad."

Grandma Tutu...
During one Sunday visit to my parent's home, I went in to see my then 93 year-old grandmother "Tutu" (which means grandmother in Hawaiian). Out of the blue she turned to me and said, "Anne-Marie is not happy with her decision to move to Boston. She loves those children and she loves you. What are you going to do about it?" I told her that Anne-Marie had chosen to move to Boston and that she would probably marry the man she was seeing there.

My Father...
When I returned to the family room where the kids were playing with Grandpa, my Father looked up at me and could tell that something was wrong. We went where we could talk privately and I told him what his mother had said. I'll never forget his response. "Son, not to add insult to injury but I’ve always felt that you and Anne-Marie would end up together. I don’t know why, but I'm convinced she'll come back."

Life circumstance...
I couldn't understand why all this was happening? I decided to follow my own counsel to Craig and send an email to Anne-Marie. In my message, I explained that I was having a difficult time moving forward with my life and I wondered why she wasn't engaged or married to this man she'd been seeing.

The second miracle...
That very night Anne-Marie called me on the telephone and asked if I was OK. I repeated what I'd written in my message by asking "Why aren't you engaged or married to this guy yet?" She responded, "We've talked about getting married but I've been struggling with it." "Why?" I replied. "Do you really want to know?" she asked. "Of course!" I said. She then said, "I'm not sure if I can marry someone when I'm constantly thinking about someone else...I think about you and the children all the time." I couldn't believe what I was hearing. I asked her "What do you think this means?" and she replied, "I don't know but I have to find out."

I suggested that she come back so we could sit down and talk. Perhaps we'd find the closure we both needed and could move on with our lives. The next day, she was on a plane returning home. As you can imagine, this didn't go over very well with her boyfriend.

Brought together one last time...
Later that day I went to the airport to pick up Anne-Marie and take her to her parent's house. From the moment I saw her, it was as if she had never left. We talked and laughed as we caught up on each other's lives. The next day she told me that the only thing her mother had asked her when she returned home was what she should do with the Christmas present she'd purchased for her boyfriend. I had to laugh (but later I asked myself, "Why would her parents want her to be with me?").

It became immediately obvious that in order to talk freely and not be seen by those we knew, we'd have to get out of town for a few days. I didn't tell anyone (except the woman who was staying with the children) where we were going. My family thought I had eloped with my girlfriend and Anne-Marie's family thought that I had eloped with her. We spent a few days just enjoying each other's company as best friends (i.e., no physical anything).

On the second day away it became apparent (from all of the voice mail messages on my cell phone) that we needed to get back to "reality" and so I asked Anne-Marie if she knew what she really wanted in life. She said she needed time alone to think so I left her for a few hours. When I returned, she was smiling and almost giddy. I asked if she knew what she wanted and she replied, "Yes, I want to be with you." I'm sure I already knew what I wanted.

I suggested that we return home and spend some time apart (and not even talk on the telephone). During this time, she would speak to her boyfriend and family and I would speak to my girlfriend. If, after a day or so, we still felt the same, we'd make plans to get married.

We're getting married...
I wondered if Anne-Marie would be dissuaded by her parents or boyfriend but to my joy, when I called her the morning of my 40th birthday, she had fought her battles and was still intent on moving forward with me. What a day this was going to be!

I wanted our engagement to be special so I made plans to take her up the canyon to "talk." As we drove up the canyon, the recently fallen snow covered the trees; creating an almost tunnel effect. Strangely, we were the only ones headed up the canyon (for there were no other tire tracks in the snow).

When we reached the parking lot (where the road is closed about halfway to the top), I parked overlooking the canyon below. It was so beautiful. I had a snowman quilt that I wrapped around Anne-Marie's shoulders as I escorted her to the back of the car (SUV). I then gave her some flowers and lit a candle with a snowman base (actually five snowmen in a circle), which I explained represented my five children. The candle was, of course, Anne-Marie who had been a light to my children during times of utter darkness.

I explained to her that the snow was so very beautiful but that it made life harder. I told her that life with me and the children would be much the same. It would be harder (in the sense of having five children from the start; each with a 50% possibility of dying from a terrible disease) but that like the snow, it would be more beautiful and rewarding. I told her that she'd been my best friend and that I wanted so much to grow old with her. Maybe "older" would have been more appropriate since 40 is already old!

I gave her a snowman doll to open (similar to the hollow Russian dolls that get smaller as you open each doll). Inside the last snowman was an engagement ring. I asked her if she would be my wife and she said yes!

Happy birthday...
Now that we were "officially" engaged, we could hardly wait to tell the children. (They didn't even know that Anne-Marie had come back to town.) We decided we would tell each of the children in a very personal way (which I have on video). It was after dinner when I assembled the children in the family room to open "birthday presents."

When we were all seated I reminded them that today was my 40th birthday and that because it gave me such joy to give presents to others, I had a personal gift for each of them. I made them promise not to say anything to the other children when they opened their gift.

I started by handing Rebecca a little ring box that was wrapped. She tore off the wrapping and said "what’s this Dad, my engagement ring?" I told her to look inside where she found a note. The note was the letter she had written to Santa with some words penned below. It said, "I gave the ring to Anne-Marie and she said 'yes.' She's going to be your new mother." Rebecca's face went immediately blank then her mouth dropped. Within seconds, her eyes watered and she looked up at me and asked "Is this true?" No sooner had I said "yes," then she ran to my arms where we hugged each other as tears streamed down from our eyes. At this point, Trevor (the middle child) started to cry and the other children were wondering what was going on... especially Craig.

Just then, the doorbell rang and I asked Craig to get it. (We couldn't see the doorway from where we were.) When he opened the door, there was Anne-Marie. She immediately pulled him outside and shut the door. There she told him that she was going to marry his Dad and be his new mother (just like he wrote in his email to her). He cried and they hugged. I told Rebecca to see what was taking Craig so long and she went to the door and Anne-Marie took them upstairs to one of the rooms.

Trevor was next so I told him that his present was upstairs in his room. As he went into the room, he suddenly turned and Anne-Marie was standing behind the door. He started to cry, hugged her, and then said, "Anne-Marie... I thought I'd never see you again. I've missed you so much!" She then told him she was going to be his new Mom.

All that was left now were the two youngest, Andrew and Hannah. I told them that their present was upstairs in my bedroom (where Anne-Marie was now waiting with the other children). I held each by the hand as we started to go upstairs. It was then that Andrew announced that we all had to close our eyes (which made negotiating the stairs an interesting experience). We finally made it into the room when I told them to open their eyes.

Andrew saw Anne-Marie sitting on the edge of the bed and ran to her exclaiming, "Anne-Marie... oh boy!" Hannah just stood there for a few seconds in somewhat of a stupor (I think she was shocked to see her). As Hannah ran to Anne-Marie, Andrew said "I thought you had’ed a boyfriend?" Anne-Marie explained that she was going to marry their father and be their new mother. Even now, when I think of this, it brings tears to my eyes.

Life now...
One month later to the day (January 15, 2000), Anne-Marie and I were married. In December 2001 we celebrated the birth of a new baby in our family, Paige Noel Bishop. Approximately two years later (April 2004) we were blessed with another little girl, Savannah Ruby Bishop. These little ones are blessed in that they will never have to worry about the possibility of dying of HD.

Married with children...
I feel like the luckiest guy in the world. What woman would marry an "older" guy like me and take on five children with the potential for disease? We've never ever used the word "step" in our family. Anne-Marie is known as Mom just as the children's first mother is known as Mom. At age 29 she manages seven children (eight when you consider her husband) and is a dedicated mother and spouse. There have been a number of times people have confused her for my daughter (which she doesn't yet appreciate!).

Anne-Marie is beautiful, intelligent, spiritual, and really fun to be with. She could have married any number of men. Why she's with me I still don't know. I do know, however, what it is to be a mother (because I had to try to fill that role for some time). Believe me, Anne-Marie is a gifted and loving mother. Just ask her children (Rebecca, Craig, Trevor, Andrew, Hannah, Paige, Savannah, and me)!