Mary and I are seven years apart, we were told by an astrologist at the Ocala, FL Strawberry Festival that “according to NASA” the moons on our respective birthdays are two halves that create a whole. She was born with Down Syndrome and a hole in her heart the size of your thumb. After enduring two open heart surgeries in her first ten days, her little body courageously fought to live and beat the immeasurable odds against her. She must have known we needed her.
We are the second oldest and youngest of a family of five daughters. While I always imagined, late in life, Mary would ultimately live with me for long term care, I was not prepared to be asked to step into full responsibility for my sister when I was thirty-three. On the heels of a cross-country move, with no home and in the midst of job interviews and very much still single. Not to mention not due to a death but a catastrophic medical emergency for our Mom, suddenly leaving two very vulnerable people for all of us to care for long term. I want to say that I rose to the occasion with ease and with no sense of terror but that would not be the truth. This, this series of events didn’t seem possible. Mom permanently disabled, Mary without a home, caregiver or security indefinitely and all of us fumbling forward trying to make the best next choice for both. But, then when the decision had to be made I quieted my very loud, and a few very practical fears and reminded myself it was Mary. My Mary.
My beloved sister who deserved to have a champion for the long term who loves her as much as I do and as much as she loves me. On September 6th, 2019 I became Mary’s court appointed Legal Guardian.
Largely due to the pandemic and extenuating circumstances, Mary moved in with me full time a year ago and by her account is living “a miracle life!”. When the COVID-19 pandemic unfolded, the world slowed down around us, but life with Mary is one that inherently needs to slow down. She both needs and thrives in a slower and quieter pace of life. We started taking walks every afternoon after I finished my remote work, cooking amazing meals, watching movies, doing art and finding a new rhythm together. There has not been one day since she moved in with me where she hasn’t told me “You are so pretty”, “I love you”, “You are so amazing”, “I love living with my sister”, “You are so smart”, “I love your food”.
On all the days, and there have been many days of overwhelm stepping into a pseudo-new parenting role, “on the job” learning how to manage every level of her daily care, turns out she has been teaching me something at every turn. She is a master at simple thoughtfulness, kindness, car dancing, organization, the best laundry folder you’ve ever met, loves watching her favorite movies repeatedly and a hot chocolate or hamburger is the way to her heart. When she really loves something, she exclaims “Wow, so amazing!” with a big belly laugh to follow.
Her resilience and strength have astounded me as I’ve watched it up close over the last year. The number of medical conditions alone she has to live with, of which she very rarely complains about is enough to humble anyone. Even more than that – the way and how deep she loves is as if you’re getting a glimpse of Divine love. It’s effortless and true – no ego, shame, anger, disappointment clouding her heart. She loves big and she loves fully. Even on her “hard days”, she is quick to apologize, forgive, regroup and be kind. Holding deep intuition and empathy, she is a sponge of the energy and environment around her – it’s truly remarkable. When she feels safe and loved it’s like watching a plant receive everything it needs, grow tall and beautiful. Every time she looks at me and exclaims “Wow, so amazing!”, I want to and often say in response, “Mar, you are so amazing!”. Because there is nothing truer about her.
How did I get so lucky to have her part of my life? To truly know Mary is to know what love is.
I may not know what comes next or how life will shape around us, and often feel in way over my head, I have learned so much from her. This year of entirely unbelievable circumstances has impressed upon me the deep awareness that we all hold the potential to both harm and heal one another. I am deeply grateful to have been learning from my little sister how significant the latter is.