10 Parenting Lessons We Can All Learn from Kids with Cancer
As a pediatric oncologist and palliative care specialist at St. Jude Children’s Research Hospital, Justin Baker, MD, works with patients and their families in the best and worst of times. When a child with cancer arrives at St. Jude Children’s Research Hospital, no one can predict if he or she will be one of the 80 percent of pediatric cancer patients who survive. So, Dr. Baker’s multi-disciplinary team creates positive moments for children facing life-threatening diseases. Here, he shares what he’s learned from his patients and their families.
Small stuff is just that—small
It’s always important to keep perspective on what is truly meaningful and will impact your life. This is, of course, sometimes hard for teenagers to remember, but parents, too, could also use the reminder. It’s far too easy to let the small stuff get to you when you’re asking your kid to clean his or her room for the 37th time. But, again, many of the issues that cause us the most agitation are…small. Find out 50 small but powerful ways you can encourage your kids every day.
Live without regret
Never put off doing something today for tomorrow. Many of the families I’ve counseled have expressed regret about not spending more time together or having important conversations about life and relationships. And still others worry they could have done more to protect their child from getting a terminal disease. They are not unique—families everywhere feel similarly. Here’s what I tell my patient families: Don’t feel guilty if something bad happens. If you do everything you possibly can to be present and involved in your child’s life and something bad still happens—that’s not because you didn’t try hard enough or weren’t engaged. It’s because sometimes, bad things happen and they’re not your fault. That said, make the most of what time you have with your family whether it’s chatting at the breakfast or dinner table, taking a quick walk together, playing a fun, non-competitive game, or snuggling while watching a movie. It is these interactions that will sustain you in difficult times. Try these family dinner conversation starts to get kids chatting.
Because of what I do, I know life can change in an instant. One minute a child’s nagging headache turns out to be a potentially devastating brain tumor. As a result, I take each moment in front of me seriously, and I don’t allow life “just to happen.” I plan activities and conversations I want to have with my son and daughters. Sometimes these outings are just sheer fun. Other times, I might talk with them about issues like immigration or faith so we can share our feelings on the topic with each other. Sometimes our talks are about something very practical like social situations that happen in junior high. Whether it’s an outing or a conversation, being intentional with my children ensures we are making the most of every minute.
Know that your kids may not want to talk or hear what you have to say…talk to them anyway
Every day I have sensitive conversations with our patients and their parents. We may be developing strategies to cope with medication that makes a child sick or discussing a child’s legacy. One of my patients had always wanted a puppy but was approaching the end of her life. We were able to work with the parents to get the child a puppy. The puppy became a symbol of the child’s love for her family. The dog now lives with the patient’s parents. Discussing what was most important to their daughter was a sensitive topic for the family, but as a result of these sensitive conversations they now have a wonderful reminder of their child. Sometimes I’ll say, “I know you don’t want to talk about this, but I think it’s important and here’s why.…” It works with my patients and with my family.
Be clear about your expectations
Each day in my job, I see the importance of this classic parenting tip. It’s my job to help my patients manage their expectations about a particular procedure and prognosis so they know what to expect and have the appropriate coping skills in place. But I also want my patients to be just as clear with their expectations. I ask them to tell me what makes a good day for them, whether it’s an ice cream cone or feeling less afraid, and then I try to help them get the best possible outcome. Just as I am at work, I’m direct with my own kids. For example, my kids know their health is a gift and I expect them to be smart about their behavior. I’ve laid out strict guidelines: We don’t speed; we don’t text and drive; we always wear helmets when riding bikes; our cell phone is always charged; and we don’t go anywhere without telling our parents. These are our clear expectations to also help them achieve their best possible outcomes. These are the 10 things all healthy kids have in common.
Establish a secret code so your child can ask for help without embarrassment
Whenever a patient comes to St. Jude, she or he receives a stress ball that looks like a koala. (Our palliative care program is called “Quality of Life for All”, or QoLA for short.) The ball has instructions to squish the toy if they are stressed and contact the staff at the phone number (printed on the koala’s bottom), whenever anything is needed. Anything means anything. It could be assisting with medications and appointment scheduling at home, helping process conflicting emotions in play therapy involving music or art, facilitating difficult conversations, or making decisions about pain management. Parents of teens could do something similar. Instead of squeezing the koala, your children can text an “X” if they are ever in a social situation where they are uncomfortable. Then, the parent can respond with a text saying, “I need you home ASAP. Tell me where you are and I’ll come get you.” And, then the teen can exit the situation gracefully and, once at home, the family can talk about what happened.
Ask for support; it teaches empathy
There are days when I ask my family for extra support because I will be spending time with a patient who may die that day, and I need to be strong for the patient and his or her family. Talking about these concerns in an age appropriate way helps kids be more empathetic and opens their hearts. As a result, my kids are very empathetic to people going through a rough time at school. They also know it’s okay to talk about fears and concerns. Sometimes the best thing you can do is lean into the moment and listen… simply being present is a strong way of providing support. Read on for more ways to raise an empathetic child.
Let your kids know how lucky they are
As a parent of healthy and happy kids, I feel like I have a responsibility to make sure that my kids don’t take anything for granted. This is especially the case when I know there is a parent back at the hospital that may not see their kid play soccer ever again. It gets annoying for my kids at times, but I’m convinced it sinks in. It’s a matter of repetition. My kids hear me say, “We are all so fortunate to be able to be together doing X” every day. Find out more strategies for teaching kids gratitude.
Our families at St. Jude are constantly adjusting to a “new normal.” They are trying to figure out how best to help their struggling child or teenager. I suggest to our patients’ parents modeling the behavior and attitude they want to see in their kiddo. You thought modeling certain behaviors was over when your kids were no longer toddlers? Wrong. If you want your kids to play outside more, play outside. Want them off their phone? Stay off yours. Model the behavior you want so that you don’t have regrets about not spending enough time together or taking care of each other.
Laugh, love, and live for others
One of my patients once told me she was willing to undergo a very difficult experimental treatment because her main hope was that it would help future kids. She knew it would not help her, in fact she knew it may well cause her significant distress, and she would most likely die anyway. But, she wanted her life to be a gift to other children with the same disease she had so others would not have to go through similar struggles. She lived her life this way—laughing, loving, and living for others. My wife and I try to live our lives in this same way. In fact, the first nine points here could be summed up in this tenth and most important concept. A life well lived is a life full of laughter, a life of abounding love, and a life poured out in service of others.