Pass it down? No thanks. (genetic worries about Alzheimer's)
My 4 year old took this picture. Cutie.
I visited Mom last week. She can only have two visitors at a time. Since I have two children and she lives an hour away, it meant some creative parenting moves. Prior to COVID I prided myself on being the type of person who could mostly go with the flow with my kids. Sure, I get frustrated with them every day. But I also have a lot of energy and enthusiasm for children’s activities. But, as EVERY freaking caregiver of children knows after this year, managing children and activities that are simply not for children is really difficult .
Activity manager over here.
I arrived at the skilled nursing facility, got screened for COVID and then was allowed a 30 minute outside visit with my mom. Her aide rolled Mom out (she hasn’t walked in two years) and I sat down across from her . My kids (4 and 8) played directly outside the small gate squishing lantern flies and making “soup” out of berries and leaves they found. Now I’m really tempted to clean this next part up to make myself look better, but in a push for honestly, I won’t. I hated my visit. Mom didn’t look like my mom at all. She was wearing a brown shirt the color of pea soup that I’m pretty sure is not hers. She said nothing that I understood. Oh, and I hate brown shirts. Not just on my mom. I hate all brown shirts. Get ready for me to tell you I hate your shirt If I see you wearing a brown one.
Kombucha after the visit with feet up and library books. I’ve gotten better at stopping and resting.
Within a minute of being there I just wanted to leave. My gut reaction to seeing this woman that gave birth to me was to run away from her and stop making memories of her this way. Two years of hospice and it’s like nothing has changed. So in the moment I was sitting there looking at Mom, this person that I used to take long walks with, cook with and beg to touch the corner of her yellow sweater that was so soft… and I was looking right past her at the two children I am raising. And all I could think was NEVER. NEVER. NEVER. I NEVER want them to have to sit by my as I am this type of sick. It wasn’t a passing thought or just a whispered fear that I journal about but can’t speak out loud. It was a promise that I would try to learn as much as I could to try and prevent this.
Please don’t stop calling each other “brother”. It is so cute.
I should be on fire for this. Thus begins a different journey for me of working to protect them from this. Because my Mom has left so long ago, and as her body takes it’s time in joining her mind and heart, my mind and heart are looking over a fence at my children promising them that I will do whatever I can so they don’t sit by my side with the same heartbreak. There is so much of my mom that lives in me. She made us feel so special and loved and. I feel like I channel her when I tape balloons to my kid’s chair for their birthday. She made a big deal out of us. I can still see her smiling across the room at me. I can still hear her voice when I paced up and down my street telling her I was having a miscarriage and just crying with her as the hope of our first child left me. But she would be horrified to think that in addition to everything she wanted to teach us, she might also be passing down this disease. I think she would be horrified at the whole thing.
This is the disease. It is cruel and unrelenting. It was a hard day and despite not tasting the “soup” my children made, I still had such a bitter taste in my mouth.
Unlike this person. Who seems super happy with their food choices. I haven’t eaten meat in a few years (except for the occasional buffalo chicken sandwich 2x a year from Rybread) but bacon is a food I still miss.