Support Tenacious Grace

I’m participating in the Eversource Walk for Boston Children’s Hospital this June.

In February of 2018 our daughter, Gracie, was rushed by ambulance to Boston Children’s Hospital. What had initially been diagnosed as the flu, was actually a rare subtype of the flu, and due to a previously undiagnosed condition (Gracie was born without a spleen) the flu had quickly developed into Bacterial Meningitis and Sepsis. We watched as the ER staff took lifesaving measures that morning, and then we spent the next 21 days in-patient at Children’s Hospital before transitioning to a rehab hospital. For 7 of those 21 days Gracie was in a medically induced coma in the ICU. 

Since then we have been regular visitors to the hospital. Because of Gracie’s condition (Isolated Congenital Asplenia) she requires immediate care for fevers or signs of infection. On a recent  (pre-pandemic) trip to Urgent Care, I experienced all the apprehension and anxiety that an unplanned trip to Children’s brings our family. Then, as we walked over the bridge into the hospital, I experienced a sense of relief. I didn’t have any more information about what the rest of the day would bring, but I felt the sense of relief that comes from knowing that we are someplace that can handle whatever we bring. It’s the paradox of Children’s for us; we never want to go there, but are always so grateful to arrive there in a crisis. 

During Gracie's first hours/days in the ICU in 2018, I was desperate for people to endorse any reason for hope. That’s all I wanted. Just for medical professionals to tell me that yes, she can survive this. What I was often told was, “If there’s any place in the world that can help her, it’s Boston Children’s Hospital.” At the time, that didn’t feel comforting, but I understand it now. She needed to be there, and we were incredibly blessed that it was our local hospital. We also know that we are no more deserving of the highest quality of medical care than any other family who might not have BCH as their local hospital. 

The other thing about BCH is that it continues to be a special place for our family. That might sound weird, but it’s true. When Gracie was younger and visited BCH we had a routine: we get a snack, we visit the fish tank, we walk the musical stairs and we watch for the robot “choo choos” that deliver meals. Her annual appointment fell on Halloween this year. After her appointment and shots, she got to trick or treat around the hospital. I can’t tell you what it meant to me to revisit places I associate with her illness and watch her getting treats. To see the joy on her face and to be reminded of how far she has come. As she's gotten older she's become an advocate for the hospital as well, this year speaking in front of a crowd of a 1,000 people at the BCH Champions' Dinner.  The hospital gives her these opportunities because they care about kids at BCH. Not just about saving them, but about letting them have lives filled with as many childhood pleasures as they can provide.