Day 448

day 448


Today was Celebrate Learning Day at Benji’s school. Last year, he missed this fun filled day, but the parents and teachers were thoughtful enough to send him t-shirts and gifts from the various stations set up around campus. Today, he sprung out of bed to get dressed and ready. He wasn’t going to miss a thing.

I was able to volunteer for the cruise-ship themed event at the “hospitality hub.” I was helping students decorate beehive shaped cookies. It was designed to be a unit on the importance of bees to the food industry, but to the kids, it was all about the frosting and sprinkles. Benji came through our station during the second rotation, happy as could be, just one of a giant, excited, sugar-high tribe.

Another event we missed last year was Cause 4 Hope, an annual fundraiser to raise money for Neuro Challenge Foundation, benefiting families coping with Parkinson’s disease. Tonight, we attended, leaving the boys with our sweet neighbor and babysitter to join Kathy, Gana and friends for the swanky affair. Michael even wore a tuxedo (an extremely rare occurrence). It was such an inspirational and enjoyable evening. I recognized again the common thread between the passions in my life; whether it be maternal health, or Parkinson’s disease, or childhood cancer, we make connections based on our shared experiences. If we see someone approaching a rocky road, and we have traversed that road before, it is both fulfilling and helpful to shed light on that road for them. That connects us and helps us and propels us forward.

One of the guests of honor at tonight’s fundraiser was a friend who has recently been diagnosed with breast cancer. Her appearance at the fundraiser was her first in public. I remember so clearly how that first step outward felt for me, how I thought I would surely pass out without arms to catch me–and I’m just a caregiver. I stood in awe of my friend tonight. She drew her strength from a deep place.

A little girl whose mother I’ve befriended had her port surgically removed yesterday. Her intravenous chemotherapy has ended, and her oral chemo will come to a close in late April. Her treatment is almost over. She is cancer-free. I’ve been checking in with this mama frequently. She is feeling so many things right now. I can only imagine. I will be there in the blink of an eye.

Another mother whose child is only in her third month of treatment asked me today how Benji was handling maintenance. She asked me how I was handling it as well. She said, “Is life fairly normal again?” And I responded (verbatim):

“Yes and no…yes in that he’s in school full time (almost), playing baseball again, guitar lessons…feeling good almost all the time, and I’m so grateful. It’s myself I need to work on. I have a hard time knowing who I am anymore, and I have some anxiety…he takes nightly oral chemo (your daughter will too) and every single morning I wake up in a panic thinking I forgot his medicine the night before even though I know I didn’t. And of course every bruise or tired moment I freak out on the inside, even though I know logically that he is totally fine.”

This is life. We dress up, we break down, we find common threads, we relate to each other, we lend our hands, we lift others up. And if we’re lucky, we find beauty in the little things. In the sprinkles. In the tuxedos. In the memories. In the moments.

4 thoughts on “Day 448

  1. Benji looks so handsome in the picture above. (Kenehore–that’s a Yiddish expression to ward off the the evil eye when there is something good.)

    Love, Sonia

  2. Happy Easter and Spring to you, Mike and your little “eggs.” What a rebirth to health you have had this year. Much applause!! and love. Marcy

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