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April 25, 2021

The Graceful, Sad, Real, Messiness of Suffering & our “Light in the Corner Room.”

 

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She lived in the corner room up on the fourth floor for 321 days.

The corner room with all the giant windows looking out at the tall city buildings where she would sit and observe people playing with their dogs on the lush green grass.

She watched families eating their lunch at the picnic tables and kids frolicking around on the play structure.

The corner room with the park across the street where we rolled out a huge happy birthday banner on a sunny summer day when she turned six years old.

The corner room was where she lived, attached to a mechanical heart and a dialysis machine waiting for a double organ transplant from some other tragic child’s destiny.

In this corner room during one of the darkest, scariest years, when we were all wearing masks and only one visitor was allowed, our brightest light resided. The corner room became the heartbeat of our unit.

She had this devilish smile and this sassy, hilarious personality. She had a stuffed elephant that she adored. There was so much spirit, spark, and energy in her spicy, old soul.

Sometimes she could be really moody, difficult, and sad, and it was emotionally exhausting caring for her. On other days she was full of life and adventure and brilliant ideas.

She insisted we get creative, so we had dance parties, singing sessions, campouts, and happy hours. She was a skilled mixologist at heart and loved making cocktail concoctions from all sorts of liquids, juices, and condiments. She would mix, stir and squeeze in a lemon wedge, and then with a huge naughty grin, look you straight in the eyes and say, “Drink it!”

She was our teacher. Her strength and perseverance were unmatched, and from that, we all learned to be better—better people.

She taught us patience and resilience and challenged us every day. Her mighty spirit and unbelievable journey inspired us to be kinder, more empathetic caregivers as we worked hand in hand to get her through her darkest days.

She was the boss, the conductor to the brigade of nurses, doctors, and therapists who cared for her broken little body and vibrant personality. She was like glue, connecting us all like never before.

We celebrated so many successes in that corner room.

She was our gift, our COVID-19 gift, giving us strength as we held her hand through the pain. Giving us insights that enabled us to lean on each other for support.

She made us laugh because she was ridiculously funny. She made us richer, not in money but in the real meaning of life. She gave us great joy, and we all fell madly and deeply in love with hope for her.

And then she left us.

It felt like we had watched her climb up this enormous mountain, only to get to the top and fall. Like a huge curtain was closing, and the best “life performance” was coming to an end.

Her fight had become our fight as we watched her, always with her beloved stuffed elephant in hand, make suffering graceful, sad, messy, and real. She moved the energy in that corner room profoundly up.

We were never going to be ready for her show to be over. We were never going to be ready for the lights to dim.

Her presence made an everlasting impression. She found goodness in it all, and with that, she united people. We all learned and loved and lost from this extraordinary shining light.

The morning she passed, the entire sky had slivers of brilliant orange with a glamorous arrangement of periwinkle cloud formations. It was as if a giant chorus of angels was lined up and awaiting her arrival.

Everyone came to say farewell—nurses, caregivers, kitchen staff (she did order a lot of lemon wedges for those tea parties), X-ray techs, surgeons, doctors, and therapists.

We shared stories, funny stories, heartfelt stories, forever stories; we laughed, cried, hugged, and prayed. The music therapist played her guitar as we sang her favorite songs with horrible, off-beat, crackling voices and snot running down our noses and pooling inside our masks.

We drank her favorite water and toasted to her spirit and the heavens above. We placed a big, beautiful bow in her hair, bathed her one last time, and then wiggled her into the softest, prettiest pajamas.

We pushed a loveseat into her room so her parents could hold her and cherish her as the angels lifted her up. We held them and comforted them as they said goodbye.

I don’t know how else to explain this incredible child and her beautiful passing…

We were all in awe; we were all in it together; we were all devastated—yet closer than we had ever been before. We had all suffered and with that grew a bond that connected us so deeply in this messy and hard and incredibly beautiful life.

The way I like to think of it now is that she climbed the steepest mountain—during the most challenging year—and she finally reached the top. On her journey up, she sprinkled love on everyone around her, making them better human beings. And when she reached the top, she opened up her arms, and she flew.

The girl in the corner room flew, and she changed us all. That bright light in the corner room is gone, but it shines on—a little spark of it shining in all of us.

She was our gift.

“It’s like singing in a boat during a terrible storm at sea. You can’t stop the raging storm, but singing can change the hearts and spirits of the people who are together on the ship.” ~ Anne Lamott

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