Our household was lovingly kept afloat by the kindness of neighbors who brought dinners, drove the kids to school, even picked up our clothing at the dry cleaners. I can’t say enough what a difference this made. The people who extended themselves (some of whom I don’t even know) will forever hold a place in my heart.

But there were also times we needed not to be a community project and for people not to assume we wanted or needed their well-intentioned, but sometimes misguided attention.

If people in your community want to help by raising funds, bringing food or anything else, make sure they know what you do and do not want. It’s better for you and better for them. Caring neighbors may be happy to help, but like everyone, do not want their time or kind sentiments to be wasted or worse, an intrusion.

Let trusted friends serve as gatekeepers and manage the flow of information out of your house and the flow of food in. And be very clear at the outset that nobody is authorized to use your story, your photo, your child in connection with fundraising or other activities without your explicit approval.

Managing others can be a daunting task especially when an illness is prolonged. Be kind, be grateful, be firm. And if the clothes stay an extra day at the cleaners or you have cold pizza for dinner, everyone will be just fine.

When Taylor had her first relapse, she needed a little space and wanted to manage it privately. She knew love and support were there for her, but did not want to create commotion with her difficult news. She wanted to live her life as normally as she could and the decision to be private was part of her strategy.
As long as Taylor could, she kept her new battles to herself. She had hospital visits, treatments, and even surgeries as quietly as possible and did her best to hang on to her life as a normal kid. We all honored that wish.
But as time went on, it became apparent that something was up with us. Sadly, we began to feel like a topic of gossip and the stories going around actually started to be worse than the reality. At that point, Taylor rethought her plan and began to go a little public.
Sometimes you or your child need to fly under the radar. Always take your child’s feelings into account, even if your needs are in conflict. Patients facing challenging circumstances naturally feel helpless and need to know they can control a few things in their lives. Let your child decide exactly how public or private she wants to be and let the family follow suit. As a parent and caretaker, I needed support from friends, but I felt Taylor’s wishes always came first. And despite what I thought I wanted, I also drew strength and a sense of control from her decision.