While Boston may be well-known for its great cuisine, the last thing a family traveling to Boston Children’s Hospital for long-term treatment is thinking about is fine dining. When parents care for a sick child in the hospital, it can be difficult for them to leave their child’s bedside to catch some sleep, let alone to take in the local fare. For more than a year, however, Boston Children’s has been working to change that by bringing the downtown Boston dining experience into the hospital.
When your child is sick, a good friend can make all the difference in the world. But when you are that friend, it can be hard to know what to say or do. Unfortunately, sometimes even the best intentions miss their mark. I recently spoke with a few parents with chronically sick kids who said even some of their best meaning friends were anything but helpful when trying to relate to their position.
“Something I hear repeatedly that has become a thorn in my side, without the person realizing the negative connotations, is the question: “How do you guys manage? It must be so hard to handle all that responsibility,’” says one dad. “I appreciate the sentiment, but we already know that being a parent of a sick child is hard; we don’t need to be reminded of it. We get through it with some work, but manage to love and have fun in process. The challenge doesn’t define us.”
To help people become better helpers, I’ve spoken with several parents of children with medical conditions, who together helped create this list which we hope can act as a guideline for people looking to help families with a medically fragile child. …
Caroline Rider used to work in publishing before her three children were born. Life was going according to plan until her son, Charlie, got sick. After that her world tipped upside down, and in the shuffle Caroline found herself publishing again, but in a different capacity than what she was used to.
When Charlie, my then four-year-old son, was diagnosed with Acute Lymphoblastic Leukemia in October of 2006, my structured and predictable life came to a screeching halt. I had always prided myself on organizational skills that let me run a household of five with calm and ease, but after Charlie’s diagnosis concepts like “predictable” and “calm and ease” went out the window. It was a very scary time for my family, but it didn’t take long for me to find an outlet for my fear that became a safe harbor against our sudden turmoil.
Four days after Charlie’s diagnosis, I wrote an e-mail to update my friends and family about our situation. A week later I sent out another, and then another a few weeks after that. Overall I sent 39 ‘Charlie Updates’ during the course of my son’s four-year battle with cancer. Initially the updates were a way to share lot of information about Charlie’s progress with a lot of people, and do so in a quick and efficient manner. However, as the months and years passed, the updates became just as much of an emotional support as it was an information sharing strategy. Writing about our ordeal helped me cope with the problems my family and I were facing. It was cathartic to write it all down. It took away the burden of having to retell the story over and over again, but it also helped me to focus on the day-to-day. Once I wrote an update, I could put the unpleasantness of certain situations behind me and focus again on getting my family back to what had come to be considered normal. …