October 25, 2018

My mom is in town visiting so I didn’t have a chance to post yesterday after I visited Jane. Luckily my mom didn’t mind that even though she came to visit me, I didn’t want to miss my weekly visit with my stepmom. As hard as it is some days to visit Jane, it’s harder not to see her. I know our time together is limited which makes me appreciate the time we do have so much more.

Jane was sitting at the kitchen table when I arrived. She was slumped forward – almost like a hunchback. I tried several times to help her sit upright, she would always hunch forward again. It made it challenging to feed Jane lunch & honestly I worried about her choking. I talked to Emely about it – she said Jane had been this way since yesterday morning but as far as she knew, nothing had occurred to cause this. Perhaps Jane’s muscles have simply atrophied to the point she’s unable to hold herself upright? It also makes walking challenging. I hope this is a temporary state for Jane, but only time will tell.

Jane was alert & aware today & as soon as she heard my voice she smiled from ear to ear. She was very happy to see me. I noticed Jane was wearing a blue shirt, as was I. I said look we match today! She said yep & laughed. I told her I brought my favorite cupcake today since she had her favorite last week. She said oh ok & gobbled down every bite. It was peanut butter cup. The chocolate cake was very moist & Jane enjoyed it. When she was done I asked her if she felt up to walking to the trees. She said no. I tried at first to get her to walk, but it was immediately evident the hunching forward was not going to make it safe for us to walk to the trees. So I grabbed her wheelchair & Emely helped me set her in the chair. We pushed her back & as upright as possible, but Jane slid forward several times on the short distance to the trees. I had to stop often to make sure she would not fall out of her wheelchair. Even once we made it to the trees, I had to adjust her several times. I’ll be honest – it was a bit worrisome.

Jane & I sat under the trees & talked. She has so much to say to me today. Most of her words were jumbled but she clearly spoke about her mom, her dad & her sister Becky. If you have followed my journey from the start, you know I do not like Becky. She has treated me, my dad & even my sister Bobbi (who is her blood relative) horribly & quite honestly, from my opinion has never been a good sister to Jane. Not before Jane became sick & absolutely not since Jane has been sick. But Jane loves all of her sisters deeply. I’ve always known this because over the years Jane has spoken with me at length about all of her sisters. And while I think she is disappointed her sisters rarely came to visit her, I believe she understands that she is the one who chose to move away – not them. And I believe this is why, before she became ill, she often went to SLC to visit her sisters. Again, my beliefs are tied to so many conversations between Jane & I over the years. She’s been a part of my life since I was 16 & when I moved to Arizona after college, I spent significant amounts of time with Jane. We had a challenging relationship, but family always seemed to be an easy topic for us to discuss. I spoke with Emely before I left Jane & she said she kept talking about Nancy this morning – isn’t that her sister? I said yes. Clearly Jane’s family was on her mind yesterday. My guess is she thought of all of her sisters & her brother Jim too – I just wasn’t present to hear her mention their names.

We texted my dad like usual & when I read his text to Jane, she smiled this huge smile – the kind that lights her eyes up. We don’t see that kind of smile very often anymore. But again – she was very alert yesterday & seemed to have control of her mind (if not her body). I told my dad he made her smile & he said that makes me smile too. When I read that to Jane, she spoke – I believe saying she likes to make him smile. Jane long ago lost most o her language skills, but she & I have a deep connection & often times I can figure out what she wants to say. I may not translate her perfectly, but close enough. I speak to her what I believe she said & she nods yes or no to let me know if I am on target. I’ve come to know her so well, it helps. But it’s funny because when I say I’ve come to know her well, it’s her emotions I know. Not things she has told me about herself (although before she became sick we had many conversations about that kind of stuff too). This disease has taught me so much about listening with your heart instead of your ears. Our ears lie sometimes – we misinterpret things. But our heart never lies.

I would never wish this horrible disease on anyone. But being true to my nature, I always look for something positive – some reason to be grateful. So I will say I am grateful for the way this disease has taught me to listen with my heart, to be present in the moment & to always say what is on your mind. Tell people you love them, that they matter to you, that you are grateful to have them in your life. Don’t hold back for fear of sounding silly or overly emotional. We all want to feel appreciate & feel wanted.