For TitaniumAmy, much of life is like being Alice in Wonderland. She is too old for youth programs, too young for adult care. Too disabled to participate in many activities, too healthy to be accepted into events for the disabled. She has aged out of pediatric specialties, but adult specialists aren’t always interested in treating “childhood disorders.” Her body and mind are similar to an adolescent’s, while on a cellular level she has more in common with someone 3 times her age.
There are very few places that are “just right” when you have a rare disease. One of those places is The Children’s Inn at NIH.
The Inn was created to give families of seriously ill children a “place like home” while at the NIH. Instead of staying isolated in nondescript hotel rooms, residents stay in a family-centered environment that caters to their need for normalcy amidst the most unusual of circumstances.
There are plenty of activities available, from field trips to game nights, to regular family-style dinners provided by generous community groups. There is an arts-and-crafts room, game room, teen lounge, and fitness center. The playground is simply beautiful, and the facility itself looks more like a ski lodge than a hospital-based hotel.
Recently, The Children’s Inn expanded their services to include young adults, up to age 30. They recognized that many of these patients are like Amy, and would benefit from the home-like setting and youth-centered activities. For us, especially this trip when it was just the two of us, The Children’s Inn has been a godsend.
There are many things that make The Children’s Inn wonderful. Here are just a few.
- There are no phony conversations at the Inn. Every family is going through something unique, but that gives everyone something in common.
- Nobody stares. The residents can just be who they are without curious bystanders commenting on their looks or their medical equipment or their behavior.
- Everyone understands the clinic experience. It’s so hard to convey the level of mental exhaustion that comes from hours spent in appointments. But Inn residents get it…and even laugh about it!
- There is hope without pity. Families at the Inn are brave. Most are up against some pretty daunting odds. But they have hope; hope for their own children for sure, but also hope that what is learned by their participation in research will help families in the future.
- Families are treated with dignity. While every need is met at the Inn, it is never with a condescending hand. Any hospital, but especially one as immense as the NIH, can make you feel insignificant. At the Inn, families can recharge, and remind themselves that they are more than just patients.
- It is a community. From the highest-ranking staff member, to the smallest child there, every person (or dog…we love Therapy Dog Zilly!) has something to contribute to the culture of the place. Each part creates a beautiful whole.
TitaniumAmy and our family have been fortunate enough to have stayed twice at The Children’s Inn. I don’t know how to express my gratitude at the recent expansion to accept young adults, so this is my thank you. Amy would have “aged out” this year, but instead, my Alice in Wonderland found a place that is just right, and we could not be more grateful.
To learn more about the Inn, or to get involved, you can find them at childrensinn.org.
EDIT (8/23/18) FOR UPDATES ON THE CURRENT INN EMERGENCY, OR TO DONATE TO ASSIST FAMILIES, GO TO: http://childrensinn.org/emergency/
Titanium Amy 