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Several years ago...
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...
It was never a job...
The first miracle...
Life without a Mom...again!
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...
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."
The second miracle...
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...
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 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!
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.
Married with children...
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)!