The life of a man suffering from Huntington's Disease, a genetic and fatal illness. Every child of a HD parent has a 50 % chance of suffering from this fatal degenerative neurological illness.
This is the story of one such person.
As those of you who have been following my blog probably know, this holiday season has been extremely tough on me. I don't know what one thing it has been, but everything has piled on top of everything else until I felt like I was suffocating.
Finally, Jane called in late to work this morning and sat down to talk with me. If this sounds like it started as a parent to child talk, that's exactly how I felt. Then she just looked at me over our matching bowls of cheerios and asked me what has been so upsetting. I told her that I don't know, but I feel like everything, and nothing. That everything just seems to be piling up lately, and each thing seems to be bigger than the last thing I've moved off my plate. She finally asked me if I still had the marriage licence in the drawer where I had put it last week when it came in the mail. I told her I did.
Then she said she needed to go to work, and that she would see me at the Register at 4:30.
Yeah, why not?
I may not do many things spur-of-the-moment anymore due to my HD, that's okay. My wife seems to be doing enough for both of us.
Jane, thank you for marrying me.
Noel Paul Stookey-"The Wedding Song
Since I'm not sure about internet access at the Disneyland Resort (and its fireplace) , nor do I know if I'll care about the internet access, Merry Christmas.
I finally got some some sleep, or I could say I crashed and burned. By nine pm I was knee deep in sleep. It was nice!
My sleep cycle readjusted, and I woke up bright and early. The downside is that my telephone is still sitting at 61% charged. Oh well, so is life. Just another excuse to stay in bed and read.
Band Aid-"Do They Know its Christmas"
I remember this record. I bought it, brought it home and put it on my turntable looking at the sleeve. I was surprised at the intricate design with so little time to design it. Overall, it was a nice little package.
David Bowie & Bing Crosby - "Little Drummer Boy/Peace on Earth"
Later today is a Christmas Party. I left an open open RSVP with the host. As much as I love this particular group and the party- the larger the group, the worse my physical symptoms lately. Its something I know I should be confronting but I'm not necessarily ready to do that.
Van Halen-"Right Now"
I love this song. Its on my list of empowering music. It reminds me that I can be here doing what I need to for myself or some where else. I want to be here, where I am, "Right Now".
The next three songs are the current contenders for our wedding. If you have a favorite, let me know which one and why in the comments.
John Denver-"Follow Me"
I had forgotten this one until Jane brought it up when we discussing music. I don't know where I was exposed to this Denver song, but it was soon after my arrival in America. All I know is that in my mind I had always told myself that when I find the woman that's in this song I'll know she's the one. When I met Jane...you got it, she was the woman in this song. I didn't tell her this until three years ago as I didn't want to scare her away LOL.
Next...
Stevie Nicks & Don Henley-"Leather & Lace"
Its offbeat, but so are we. Its also speaks of a strong woman with her own life separate from her lover, and a man who is not afraid to show to her his emotions. It also has a silly, literal meaning for us. When we first started dating, she was renting a house with two other girlfriends. We now own that house and the two former roommates will be her matrons of honor. I literally "walked into your house, and knew I'd never want to leave"
This is the current taker for first place:
Noel Paul Stookey - "The Wedding Song"
Yes, it has some religious references but I don't have a problem with them. With my spiritual uncertainty at most they it will always represent a snapshot of my life at the time we were married. If I spiritually move in any direction I see myself moving toward the spiritual side not the radical atheist side. Jane has always been a spiritual (not religious) person and really loves this song. Also if we chose this song and either of us move away from that point of view before the ceremony we can always revisit our choice at that time.
On another note, before I play one last Christmas song, yesterday evening Jane and I had another discussion. She wanted to revisit the issue of having children.
No real problem here. I've had a vasectomy and we both know the chances of having that reversed.
Did I tell you she had done her homework?
Yeap, she brings to the table a pile of information on pre-implantation genetic diagnosis-in vitro fertilization treatments, and the fact her health plan covers this procedure. That's a mouthful, huh? What PGD-IVF consists of is conceiving embryos in a petri dish and testing the embryos for Huntington's first, then only implanting the ones that have tested negative.
Also, in IVF they can use a little needle to extract the sperm (OUCH!), so having a vasectomy doesn't stand in the way of the procedure.
Now, actually I don't have any problem with this, well outside of the needle part. Its just, well, I never thought that I could be a father.
Paul McCartney will be our double feature today.
Paul McCartney-"Put it There"
Last time I played this on my blog it was
about my Godson, as I thought
that was the closest I'd ever be to having a child.
Have a dreamed about it? Actually yes I have. After Jane and I last talked about this topic I had several dreams about being a dad. Its something I'd love to be, but its just that this has always been a bottom-of-the-bucket-list-sort-of dream, you know? Now its one tiny, well more than tiny, step closer to becoming a reality.
I told her to go ahead and start what she needs to on her end, I'm good to go on mine. Her mouth dropped open. I leaned over and closed it. She hugged me and then nearly passed out. She really thought there was a good chance I was going to say no go. I told her that she doesn't need to second guess me, if she thinks I'll say yes, she's probably right. And then I told her if she hadn't already made the appointment I'd give her ten bucks because I know her that well. She admitted she had, that it was Monday and that's when I told her we aren't getting married because we don't know each other, after all.
Paul McCartney-"Maybe I'm Amazed"
John Lennon-"Woman"
To to be a sneak I slipped this in her IPod alarm clock this morning.
Here are two Christmas songs to lead you out this afternoon. They are as different as can be.
A Cold War favourite Weird Al-"Christmas at Ground Zero"
