Staff member Dawn Emerman shares her family's experience with The Boston House.
I love my job as Assistant Director at The Boston House. But my connection to The House is much deeper than my working here. My connection goes back much farther.
Looking at the snapshot above my desk at work takes me back. The photo shows two laughing children. The older girl has long blonde hair and is dressed in a white blouse and navy blue flower print bell-bottoms. She holds a hand in front of her laughing mouth, resting her chin on it, her eyes squint-smiling behind. The other child is younger, bald, dressed in green feet pajamas. She grins crookedly into the camera with all her might. Two happy little kids caught playing, playing forever in that shot. The older girl is me at four years old, the bald one my younger sister Danielle. It's one of the few pictures of us together at The Boston House.
Danielle was diagnosed with a medulloblastoma, a fast-growing, highly malignant brain tumor, when she was ten months old. The diagnosis period was full of physical pain for my sister; for my young parents, the pain was in their hearts, topped off with confusion and fear. I was lucky to be surrounded by family who took turns caring for me. At first it was fun being shuffled around between grandparents, aunts, and uncles. Friends and relatives bought me treats, took me to the lake and the mall, and I got to hang out with the older cousins I wanted to dress and act like. However, after awhile I wanted to know why my parents were at the hospital all the time, why they weren't with me.
I remember vaguely knowing that my little sister was sick, but it never truly hit me until one summer day when my aunts and cousins took me to the hospital to see her. They warned me that Danielle looked different-she was bald now, her dark curls shaved off, and had a Band-Aid on her head from some procedure. I was terrified to see her, imagining a miniature Frankenstein's monster where my sister once was. But the initial fear quickly wore off. In fact, nothing about a healthy Danielle stays with me to this day.
Eventually, Danielle was sent 200 miles away to Boston-another planet as far as I knew-for chemotherapy and radiation treatment. On Fridays, Daddy would drive to Boston to bring my mother and sister home to western Maine. On Sundays, he drove them back to Boston before returning for work on Monday.
I was well taken care of, but no matter what anyone did, they couldn't replace my mother. Nobody read my favorite stories to me the way Mummy did. Nobody else could fix my hair right. Her absence left a gap in my everyday life.
At some point I began to fear everything. Each news report about a kidnapping, a murder, or a freak accident became an immediate threat-I was convinced bad things were on the verge of happening to me. I remember the feeling of my heart beating inside my head, and how my stomach hurt, and my body felt frozen. Minor things would throw me into a panic. Even going to sleep became terrifying. Not a bedtime passed without a struggle and tears.
My mother and sister stayed at The Boston House for the first time just a week after it opened in September of 1979 (at that time operating under its original name). It was a great relief for my mother to be away from the hospital in the evenings, to have her own bed and a real kitchen. For me it meant being able to stay with her and Danielle overnight when we came to visit. The House gave me a chance to have Mummy in my life on regular days, not just weekends; in person, not just over the phone. Being with my mother made everything feel good. For the first time in months I slept well at night, comforted by the sound of her breathing in the same room.
The House was a comfort to me, too. Some of my earliest memories: walking back and forth to the hospitals with groups of kids and moms; playing house and painting in the playroom; learning from a volunteer how to put Elmer's glue on the palms of my hands and peel it off in one piece when it dried. There were always lots of other kids around to play with. Never mind that a lot of the kids were bald and sported bandages and feeding tubes. For the most part, they looked no different to me than my own sister. At The House, life was normal.
Danielle died on September 25th, 1980, unable to fight off the very aggressive tumor that spread via her spinal fluid and made its way through her tiny body. I was staying at my dad's mother's-Memere's-house at the time. I don't think I was surprised at the news, though when my parents walked in the door that night I imagined Danielle sleeping strapped in her car seat. I believe I knew Danielle had died when they walked into the house without her.
I am now more than 20 years older than my mother was when she stayed at The House, and am fortunate to have a healthy son. I often find myself in awe of the families I encounter, wondering how they wake up every morning and keep on in such a time of pain and stress. I see my own parents in each mother and father. I also see myself in each sibling. No matter what our differences, their story is my own.
Danielle remains a strong presence in my adult life, partly through my work. But for the most part she continues to exist simply as Danielle, the little girl who will always be my sister. Every day I glance up and see us laughing together; every day we play, two little kids playing forever.