Blocking and Unblocking the Sun

Since being diagnosed with terminal cancer, I have had one goal: to live long enough to see The Girl start kindergarten. She was 2 and a half when I got diagnosed back in March of 2014, and starting kindergarten in 2017 would fall past median survival for me. Thinking about her having to start school without her mother brought me to my knees every time I thought about it. It’s the thing that would bring me to tears, that would break my heart–it was my biggest fear, by far.

Today, The Girl went to her first day of our district’s Kindergarten Jumpstart. It’s a week-long program for kids entering kindergarten, a couple of weeks before the official start of school, where the kids get to meet the kindergarten teachers and some of the other school staff, and learn the layout of the building, and meet the other kids, and just start to get a sense of what elementary school is all about. No, today isn’t the official first day of kindergarten for The Girl, but it’s close enough.

And I’m here. I’m alive. My recent MRI testing showed no signs of leptomeningeal mets. I’m still dying slowly, but I’m no longer staring hospice in the face, and The Girl has started kindergarten. This is the day I have dreamed of for three and a half years, and it’s here. It’s here.

How did the first day of kindergarten go, you ask? Perfectly normally. The Girl was excited and nervous at the same time, and was scared when it was time for Mom and Dad and The Boy to say goodbye at drop-off, but she powered through with the promise of ice cream after school was done. I’m guessing millions of other families had a really similar first day of kindergarten experience today. Being normal when your life is anything BUT normal is pretty amazing.

I like to think of myself as a pretty good writer, but I have absolutely no idea how to describe this feeling. I mean, none. Maybe because it’s not just one feeling–it seems to be a collection of relief and pure joy and PTSD and reliving all the awfulness of the last 3 years and pride in my big little girl and holy hell, just everything, all at once. It seems fitting that today would be a day of a solar eclipse, a time where the sky makes us stop and take in the amazing wonders of our world, to experience darkness and lightness at the same time.
#BestDocEver says I need a new goal, and he’s right. I don’t know for sure what it’ll be–I would love to be the mom of a teenager, which is almost 3 years away. I’m not sure my heart can take 3 more years of the kind of hope and terror I’ve been living with…but I’m not sure I can muster the strength it takes to keep living the metastatic life without that combination of hope and terror. The time I spent believing that I had lepto mets and only had a few months to live, I lost all will to do anything. I didn’t even care about advocacy work. The depression of that hopelessness was pretty intense, and obviously wasn’t good for me. So, maybe looking towards parenting a teen isn’t a bad goal?

6 thoughts on “Blocking and Unblocking the Sun

  1. I was very moved by your writing. I had your hopes for the future…..but in reverse. My middle son was diagnosed with AML just before he turned 16 years old. My vision at that time was to see him graduate High School…..and he did. I sent him off to college almost three years cancer free. He came home in September for his routine blood work……He relapsed. We live in Florida but we were soon off to Seattle for a bone marrow transplant…….He had a 15% chance of surviving…..My vision then was to see him graduating college…..well fast forward to 2017. He graduated college and continues to make me smile……..Keep your visions…

  2. May you live to be the mom of a teenager and enjoy every fun, stressful, nerve-wracking, hair pulling moment of it! #bestdocever is right, a new goal is the right idea.

    Congrats on your daughter’s first day of Kindergarden jumpstart.

  3. Beth, I consider you a great writer too and you didn’t disappoint. You summed this up perfectly. This writing and the action behind and around it have allowed so many of us to be intimately connected to your life and experiences with MBC that I – for one- felt some of that hopelessness and depression with you when you were entering hospice. Overjoyed that you are here, with the girl and all of us. You have been and continue to be my compass. Why not hope and set a new goal? It sounds like that is in order! Hang on hang on hang on…we are getting there as fast as we can. xoxo Rebecca
    Rebecca Timlin-Scalera recently posted…Finding Joy Amidst ScanxietyMy Profile

  4. Congrats Beth! I”m so happy to read some good news from you as I had cried over your last few postings. New goals are what keeps us going. I was beyond thrilled to see my daughter graduate in May from Harvard (which she did while working full time) so my new goal is now my son’s MBA – also almost 3 years away. We can both hope & take one day and one goal at a time. Enjoy today!

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