July 18, 2018

Lunch with Jane:

I decided to try an old cupcake flavor today since the daily specials Jane has already tried & wasn’t crazy about. I went with Red Velvet. Jane at it all no problem, but when I asked her how it was, she said ok. I asked her if she would like me to bring this flavor again & she said no. So I said, “would you like lemon again next time?” To which she said yes & smiled.

Jane was fairly quiet today but she listened intently when I spoke & always answered my questions. I am confident she understood every word I said to her & was incredibly present with me today. She was sitting at the kitchen table when I arrived & when I sat down next to her, she looked me in the eyes, smiled & reached for my hand. After she was finished eating, I took both of her hands to help her stand up. She’s no longer able to stand without some assistance. My stepmom leaned in to me, held tight with one hand & wrapped the other around my back. She wanted to hug me. She rested her head against my shoulder. It was incredibly loving. It’s been a long time since Jane has hugged me. I kissed her on the cheek & told her I loved her. She held me tighter. Her way of telling me she loves me too. You know how they say actions speak louder than words? Nothing like a disease taking away most of your words to represent exactly how true this is.

It’s hot & humid here in Phoenix – too hot for Jane & I to sit under the trees & watch the birds. And it’s too hot for her to walk to the clubhouse now – however we have a wheelchair available to get her there & back – if she wants. I asked Jane if she wanted to get her wheelchair & head to the clubhouse or if she would prefer to just hand out inside. It was quiet in the great room of Jane’s house today so she opted to stay inside. We walked towards the couch, but Jane wanted to sit in one of the chairs. She likes these. They have big arms & are comfortable & I think they help Jane feel safe. Once I got her situated, I sat on the end table next to the chair. She grabbed my hand & held it.

I began talking to Jane about my trip to Disneyland Paris to run. I’ve decided I want to wear costumes for each of the races, which Jane & I have been discussing during my planning. My stepmom is crafty & great at sewing. She didn’t come into my life until I was an adult, so I didn’t grow up with her teaching me her skills. But any time I would ask her for help on a project, she would give me a time to be at her house with the supplies. Jane always began with the best intentions to teach me, but patience was not always a strength of hers (nor mine). I would get frustrated because it was much harder for me than Jane & Jane would tell me to go bug my dad & let her work. She’d take over the project. Even today when I remind her of this, it makes her smile. I wanted to talk through my costume ideas with my stepmom. So I did. I spoke to her just as I would have 10 years ago – before this disease invaded our lives. I shared my ideas & she listened intently. I pulled up pictures of some Mickey ears & asked her if she thought I could make them. She looked & said yes. I told her my dad had given me her sewing machine so surely it had to have some of her magic in it. She smiled. Then I asked her if she thought I’d be able to design a skirt to run in. She said NO! To which I said I wish you were here to help me design my Disney running costumes. Jane looked me in the eyes & said, “I’m sorry.” I couldn’t hold back my tears because I know she is. I know she wishes she was able to be my crafty stepmom again who helps me create fabulous running costumes. I hate what this disease has taken from us.

Today was all about love. It was a mother & a daughter spending time together, sharing a small slice of their life. When it was time for me to go, Jane attempted to stand up. I took both of her hands & helped her up. Once again she leaned in to hug me. I told her I loved her & held her tight. We took a walk around the inside of her house before I left, just to stretch her legs. When she was done walking, she went back to her chair & I helped her sit comfortably. She can’t always gauge exactly where to sit. Once she was settled, I kissed her on the forehead & then said goodbye to the rest of the residents before leaving. It’s not often I get a day like today with Jane anymore – where she is so present & so engaged. Speaking is hard for her, but today, she always seemed to have the words when needed. I cherish days like this. They help give me strength on those bad days.

Take time every day to be present with those you love. None of us are guaranteed tomorrow. Be grateful for the time you have, right now.