I have been scrapbooking a lot this weekend. That would ordinarily fill my heart with happiness but I feel sad. Frantic almost. This is a long story and a painful to type so bear with me, if you please.
My dad died died back in 1997. He was the Fragile X carrier in my immediate family and he passed the gene onto all of his daughters. Although his death certificate might say something different, I know in my heart of hearts that my dad died of FXTAS (Fragile X Tremor Ataxia syndrome). You can learn about what that is by Googling it, it's not really relevant to this entry, believe it or not. He died after years and years of suffering: pain, dementia, and heartbreak all the way around. You see, he got to the point where he couldn't remember who we were, who he was, etc.....He was lucid off and on but it was so painful to watch this Giant Man reduced by his illness.
And I as his daugter stand a chance of someday dying like that, too. And it scares the living crap out of me. I lay awake last night, crying off and on about it. My poor husband trying to console but not really able to. The only people who would understand that fear are my sisters, and I am not close to any of them. I can't help but wonder: do they worry? Do they fear that they, too, will end up in pain, not aware of who they are, and terrified?
So I am making scrapbooks. Filled with my memories. For myself and my kids. Don't send me comments about being a drama queen, okay? This is not drama. It's REAL life and I think about it often. Will I end up like that? What will happen? No one knows. I am not looking for pity, just telling you why I have done 6 LO's in two days....I just want to remember, even if someday I cannot do it for myself.
I wish like crazy I had more pictures of my dad.
I wish I had more of his stories.
I wish I had some of his memories.
Okay, enough tears for this Monday morning. Thanks for listening.