Today, Lillian Jane Childs Connole passed away at the age of 56.
She was my mom.
I said earlier, I feel a great sense of deja vu, writing this out. In fact, all evening, since getting the phone call. We had so many "scares" over the last few years. And the diagnosis itself (which was not so much a diagnosis as a death sentence - there is no other way to describe ALS, especially to those who knew it as we did). I cannot recall how many times I had to tell an employer that I was "on 24-hour alert" and may be called away at a moment's notice. How many times I had to tell my friends we couldn't make this event or that because we would be away.
I am up late because we met up with some friends to drop off our dog Waylon, since there is not a place for him at my parents' house. Waylon is very attuned to what is happening around him. When I was sitting on the couch, taking the phone call from my dad, Waylon came over and put his head in my lap.
There is a definite calm that seems to have settled, for the moment, before the whirlwind truly begins. Mom was comfortable, as much as she could be, in the end. She was at peace.
It isn't that this is not hard, because it is. It is just that has been hard for so long. Explaining what it was that my mother had, weekend visits that became increasingly emotional over time. Accepting each "stage" of ALS, being helpless in the face of it as it took her away. Mourning for Mom, over and over, as different things would trigger emotions. I remember how angry I was in the beginning, how unfair I believed all of this to be. I remember Mom's own rage at what was taking place, her refusal to accept it and showing her defiance by putting off a "treatment" (the fight she put up over a feeding tube, over no longer being able to drive, over not being able to stand in the kitchen and make dinner). Dad's rage, which he showed in funny ways. The way my sisters and I shoved our grief and anger off on each other at times.
It has been a rough, long road, and I know it is not quite over. Mom is gone. We are left to figure out how to be us without her.
But it isn't figuring out how to be us without the Lillian we all knew. She was a fundamentally different person as a result of her disease. She withdrew when she figured out she was unable to communicate well, and she had strokes early on that stole what ability she had. For the last year and a half, she's been totally bedridden. We had Thanksgiving dinner without her. I had to tell her I was pregnant over the phone, and her only reaction (according to Dad, who had to hold the phone up to her ear) was a flickering blink of her eyes.
So what we do now is learn how to live without a nurse in the house all the time. How to sleep without worrying that the phone will ring or her ventilator alarm will go off. How to live in a house without a hospital bed and medical supplies. Oh, so many little things.
Things I'm thankful for tonight: Mom died at home, with Dad next to her, and not in a cold hospital. Thankful for all of my wonderful friends. Thankful for laughter, because it would be impossible to think of Mom and remember her without being able to laugh. Thankful for her faith, and for mine. Thankful for having her as long as we did. Thankful for my puppy dog. Thankful for my incredible husband, Randy, who knew how to handle this and me. Thankful for my family, my sisters and my brother and my Dad, Mike - Dad is the strongest man I know, and as Mom's caretaker for the last three years has shown me what marriage is really about.