It was a cold winter evening in January of 2011. I was at Boston Children’s Hospital where my granddaughter Emily was being treated for the loss of 98% of her small intestines, along with 75% of her large. Only two months old, she has spent most of her two months in the hospital.
She will be here a few more weeks and will be discharged with a permanent IV line, a tummy tube and an ostomy bag. I am here with her father for three or four weeks as Mom is hospitalized back home in Albany,NY
It was a fairly routine day for Emily, some x-rays to check the positioning of the IV (PIC) line. Within a week she will have surgery for a g-tube and they will work on monitoring her nutrition.
When I left the hospital this night to walk Longwood to Brookline and the Yawkey House, I got the yen for a cold one. I stopped at the Longwood Inn which is next to the hospital. As you might imagine, at any given time it is filled with families of the hospitalized, hospital employees, vendors and consultants working at the hospital. Last night was no different.
The bartender asked if I wanted a menu and a woman seated nearby commented that the food was absolutely great. I had already eaten but it was nice to know that a good place was so close. As all things in the Longwood Area are child health related, you are never more than a foot or two from people who share the pain of catastrophic children’s disease.
The woman was a mother of four and she had been here a week with a daughter with an extremely rare disorder. The disorder was known to be confined to one organ. Her daughter’s illness was not so confined and raging throughout the child’s body, destroying many organs. It mystified the best MD’s in the world till now and she was eternally grateful to the staff at BCH for embracing her daughter and herself; as fear of the unknown had driven previous practitioners to run the other way. Needless to say this had been a long road for her and her daughter, in and out of many hospitals with many misdiagnoses. We talked a while swapping family medical stories. Despite the adversity she faced she had many questions about my granddaughter’s risks and had questions about my other granddaughter who had a severe neuro degenerative disorder.
Parents of children with rare and complex disorders have a unique bond. We too often face problems that shouldn’t be: the loss of the perfect child and the prospect of a much too early death.
Toward the end of our chat she looked directly at me and said: tell me about your fears for your granddaughter’s future. I realized immediately that this question was an act of love of a mother willing to address the death of her child in the most unguarded and vulnerable manner conceivable I summarized, as best I could, the grave mortal risk that Emily faced over her first few years. I asked her about the future she saw for her daughter. She looked directly at me and said, “It may not be long before I take my daughter home for a service and then I will take up raising my other three children”.
I walked slowly home with a lump in my throat. I woke up around three and I could still see her face clearly. Her eyes were filled with tears; her face was strong and determined. Her name was Bridget.
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