September 23, 2019

I haven’t written about Jane for a while. I still visit her every single week – but now instead of lunch, I go for dinner. And after working all day plus an emotional visit with my stepmom, I just don’t feel up to writing about it.

We are in the final stages. She rarely engages with us anymore. She rarely speaks. She is unable to walk & even moving her from a chair to her wheelchair is becoming challenging. It’s definitely a 2 person job.

She still seems to have moments of awareness – except for the really bad days. The really bad days I wonder if she even notices I am there. Does she still feel my love? Does she feel anything at all? The really bad days happen more often. It used to be unique for her to have a really bad day – now its unique for her to have a good day.

I keep seeing memories pop up on facebook with Jane over the past 3.5 years & every stage always seems to be so different – until it’s not. I don’t know how else to explain it. Even now I don’t know how bad it will get before it ends. Or maybe it will get easier before it ends? I don’t know.

I’m leaving for Berlin Wednesday morning so I went to see Jane after work today. It wasn’t a long visit. I just needed to see her. I needed to hug her, to hold her hand, to look in her eyes & tell her I love her. I needed to say the words – just in case. And then I made her promise me she wouldn’t die while I was gone. I know that may sound selfish, but I can’t imagine her dying without me being here with her. We have grown very close & have a strong bond. I can’t imagine not ever being able to see her again. Yet, let’s be honest. The day is coming where that is the exact reality I will face. That all of us who love Jane will face. It seems impossible for a woman so strong & feisty to die – but that is the promise of this horrible disease.

Jane was having a very good day today. She held my hands tight & jabbered away to me. She hasn’t jabbered to me in months. I told her all about Berlin & my plans for the race & she listened intently. When I was done laying out my goals, I asked her, do you think I can do it? Do you believe in me? She looked deep into my eyes & said YES in the most clear word I’ve heard her say in many months. I have no idea how hard it was for her to say that word to me – to be that present with me. My dad said she was that way with him & my brother Matt at lunch today. My dad said she even told him she loved him.

My stubborn stepmom – even in the pits of hell with this horrible disease still finds the way to let her loves ones know she loves them & is here for them. When the race gets hard on Sunday, which it undoubtedly will at some point, I will think of Jane & all of her strength. I will lean on her to dig deep & keep pushing hard towards my goals. It’s what she expects of me – I can’t let her down. And then Sunday afternoon I’ll find an amazing German dessert to take home for her to enjoy because you know she’ll be expecting that too.