When I was in the third grade I came home from school one day and my mom and sister were leaving. My mom patted me on the head and said “Tell your Dad we left him.” For the next five years it was just my Dad and I. A single man raising his daughter in the 70’s was a pretty rare thing. Then when I was in the 8th grade my Dad married Sandy. And thus began four years of mini-wars with my “evil stepmother”. I became pretty spoiled having my Dad all to myself for 5 years. Sandy moving in on my territory did not make me happy. Recently one of Sandy’s sisters said something to the effect that it was so wonderful that Sandy and I had always gotten along. Sandy and I got a kick out of that and quickly let her know it wasn’t true! I can write all this and laugh about it because Sandy and I are close now.
About a year and a half before my Dad died Sandy started slurring her words. One thing you should know about Sandy is that she is stubborn. As my Dad would say “She is as stubborn as a mule”. We tried to get her to go see a doctor about the slurring but she insisted she was fine. Finally her siblings convinced her something was wrong. She went and saw her doctor who couldn’t figure out why it was happening. I thought she had had a stroke but tests showed she hadn’t. Her slurring got worse and whatever was causing it went undiagnosed. Then Dad died. A couple of months later she got sick and the quest to figure out what was happening became more urgent. She was having trouble with her hands and tripping a lot. Finally one of her doctors decided to test her for ALS (aka Lou Gehrig’s disease). As soon as I heard the letters “ALS” and Goggled it, I knew that was what Sandy had. Sure enough 5 months after Dad died Sandy got the ALS diagnosis. It’s been 16 months since her diagnosis and she is quickly declining.
You may be asking yourself “What does this have to do with anything?” I just spent 4 days in Denver with Sandy and it made me realize she is now a disabled person. Just like Jackson. A few years ago she was an active walker, community volunteer, sang in her church choir, played the piano, gardened, and loved talking. Today, the Sandy I know is trapped in a body that is failing her, she can’t speak, and in her eyes I see a sadness, a longing to be her old self. This disease is taking away a woman I’ve spent most of my life with. It’s cruel, unforgiving, and heartbreaking. The worst part is that it will define Sandy at the end of her life just like Jackson’s brain malformation defined him from his infancy. Jackson teaches me lessons every day. Now Sandy is teaching me some too. The biggest, best and worst lesson is that no matter what you think your life is going to be like, at any given moment it can change, for better or worse, and you have absolutely no control over it. Even when you are a control freak like me. But most of all you should “Know the person, not the disability. In fact look past the disability and you will see a person - a person who has the same thoughts and feelings as anyone else.” (author unknown) It is hard to look at Sandy and not just see the person she is now. But when I look at her I remember all the good times we had, what a great cook she was, how she used to make me so mad, and how she gave a lonely little girl and her equally lonely Dad a family.
This disease may kill Sandy, but it won’t kill my relationship with her. I’m just going to keep adding the memories up until the very last second. Disabled, different looking and different sounding aside, Sandy is still my mom and Jackson is still my son. Beautiful people in different wrapping. That’s all it is.
To learn more about ALS go to: http://www.alsa.org/