March 2007
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In her own words: Anne Renk, parent
A place like home
The Devon Nicole House is Children's short-term patient family housing facility. Located on the fifth floor of 21 Autumn Street, the house features 13 hotel-style rooms, a fully outfitted kitchen and eating area, and a common area with a TV and computers. Rooms are available to families whose children are being treated at the hospital.
"It takes a village" is a familiar saying to many people, but for those of us whose children spend significant time at Children's Hospital Boston, it's our reality. When my 7-year-old son, Luke, was first admitted to Children's for a gastrointestinal disorder, it was not the quality of the care that we noticed, nor was it the physicians' impressive knowledge or exceptional diagnostic abilities. Instead, it was the sense of community that made the biggest impression. We immediately realized that everyone here works in unison to give the best possible care to each child.
I noticed right away that the entire staff at Children's heard my voice and included me as a valuable member of the treatment team. It was apparent that they were acutely aware that each sick child comes with a real family with real issues, and that every decision made on behalf of the child affects that entire family. As a single mom from upstate New York with two other children, Seth, who's 9, and Abigayle, who's 11, I'm often asked why I usually bring my whole family to Boston when Luke gets treatment. I respond by educating them on the realities of a sick child. Unless you walk this journey, you don't realize that Luke's disease isn't just his—it's our family's disease. And no group of people understands that like the staff of the Devon Nicole House (DNH).
These dedicated people see families come from all over the world to seek treatment for their children, so they experience first-hand the impact that a chronically ill child has on families. The staff sees parents returning to the DNH from the hospital too exhausted to cry and too overwhelmed to speak. Yet somewhere in that silence we find comfort. Miraculously, they have transformed a floor in an office building into far more than a place to stay; for many of us, it's our home. As we returned to the DNH this week for another stay, Luke entered the DNH announcing, "Hi honey, we're home!" And to a child who lives in such an uncertain world, it's truly a gift to provide him with that sense of safety and security so far from home. For the first time in his life, my son is allowed to play with other children without parents being afraid of what their child might catch from him. That's because there is an unspoken understanding here, a silent unity that exists in the DNH that bonds us all.
Being away from your own home for extended lengths of time leaves you feeling anxious and alienated from the world you once knew. Coping mechanisms you once had no longer exist when your environment has become one of machines, poles and sterility. But the DNH grounds you. Walking into a decorated bedroom with a TV and an alarm clock begins to resemble Christmas morning. Returning to the aroma of banana bread baking in the oven offers an unexplainable serenity. Being allowed the freedom to perform mundane daily chores such as dishes, laundry, cooking or making your bed offers the luxury of normalcy.
The gifts that the DNH offers extend far beyond the emotional ones; the gifts are financial as well. Many families like ours wouldn't be able to remain with our child for the long durations that we do without the DNH. Personally, I fear for where my son would be if not for the DNH, since we don't have the resources to stay in the city. By providing this place for us to stay while my son receives treatment, they've been essential in the successes my son has experienced. The DNH recognizes that the support of family and loved ones is critical to a child's recovery—and a parent's sanity. By welcoming all siblings, grandparents, aunts, uncles and other caregivers, we parents can focus completely on our families. And that's a gift beyond words.
The DNH staff is one-of-a-kind, and a more caring group of people would be tough to find. Built on mutual respect, this home defies the constraints of our current society and transcends the barriers of race, color, religion and creed. At the DNH you will find that we all speak the universal language of compassion, love, caring and understanding. Raising children is definitely a group effort, but parenting a chronically ill child requires the support of a village, and that is what you find here.
