I received an invitation to a high school graduation for one of my patients who recently completed 2 ½ years of treatment for lymphoma. The invitation was address to, “Little Debbie Sunshine Wagers,” which made me smile and also brought tears to my eyes. Not tears of sadness, but tears brought about by blessings. I started to think about the relationship that I’d built with this patient and his family over the past three years and what a blessing it has been and what a blessing my career has been in my life. What is it that I do, am I a nurse? No, I work in the cancer center as a child life specialist. For anyone that doesn’t know what that is, I’ll take a moment to explain. Child life specialists are the part of the healthcare team whose job is to take care of the “emotional part” of the healthcare experience. We help children to understand their diagnosis, prepare them on their developmental level for what will be happening, and help them develop ways to cope with what can sometimes be scary, painful or unpleasant experiences. We also help them remember that no matter what else is going on with their bodies and in the world around them, at the heart of it all, they are still kids and teenagers. We do our best to help them move forward and help their families bring as much normalcy back into their world as is possible. You may have heard it said that play is a child’s work and that couldn’t be more true. Play is a universal language and it’s spoken by everyone in the world, and likely even beyond.
I’ve been practicing in child life for over 25 years and it’s hard to put into words what is so amazing about my job, but I’ll try. When anyone is diagnosed with cancer, it’s beyond devastating, even if there is a good prognosis attached to it. But, when it’s a child, it goes into a different category. How can that truly be fair? I am always touched by how our adult cancer patients talk about how unfair it is that children get cancer and have to go through this horrific treatment, and this is while their very own bodies are being riddled with chemotherapy. How really is any of this fair? When people ask what I do for a living and I explain my role, inevitably they say, “Oh my, it takes a special person to do what you do.” I’d like to explain why I think that I am the one who is blessed.
I can’t imagine anything more devastating than receiving the diagnosis of cancer, or worse yet, that your child has cancer. If you’re a young child, you don’t even know what cancer is, you just know it’s bad because it makes everyone cry. And if you’re a child who is at the age of magical thinking, you probably think that somehow you caused it. Our job is to help that child understand that it’s not their fault and teach them what the medical staff is going to do about it. I use dolls, pictures and real medical equipment to teach children about what is happening and try to take away some of that “fear of the unknown.” Using real medical equipment helps kids have the opportunity to see and use those items in a non-threatening way and allows them to play through what has or will happen. Looking into the face of a child or a teenager and empowering them to understand what is happening is an amazing feeling. While there is still fear, I believe that knowledge is power. Giving children the power to understand the best they can, what their role will be in battling this disease, and how we’re all going to work together as a team, is essential. Empowering the families to understand is also very powerful and watching them step forward with amazing inner strength that they never knew they had is, for lack of a better word, inspirational.
Teenagers probably have an even more difficult task ahead of them because developmentally they’re better able to understand exactly how big their challenge is and how long their journey can be. It’s hard enough to be a teenager today and now we’ve just added “losing your hair, feeling crappy, missing school and activities, not being able to participate in sports and other extra-curricular activities, and not being able to be a teenager and hanging out with your friends when you want to. We just made you different when all they really want is to fit in. Wow. Who dealt that hand, right? However, I will tell you that it is extremely powerful watching a 16-year old girl go from crying when she’s devastated to learn that her hair will fall out, to seeing her three months later, “rockin’ that bald head” because she knows that it doesn’t define who she is. Once again, truly inspirational.
So here is the blessing; from the very beginning of their diagnosis, on what is probably their darkest day, these families invite us into their lives. While I’m sure they all feel blessed to have such an amazing medical team, I believe with all my heart, that we are the ones who are blessed…by each and every child and family member we meet. Each patient and each family member brings with them, their own unique and special gifts. We really do learn something from each and every one of them and these things, these lessons that we learn, help us to provide even better care to that next child and family. We have no idea what it’s like to “walk a mile in their shoes,” but what we can do, is help them tie their shoe laces, point them in the right direction, maybe tell them where those long dry spells are going to be and even offer them a drink of water along the way. We get to watch them find that silver lining, even when the outcomes aren’t what we all wanted, but we get to watch them discover that special gift. Kids always talk about how much they learned about themselves along the way and how thankful they are to have such an amazing and supportive family and community. We hear parents talk about how much they learned about their child, themselves, their other children, their family, and their community. We get to be first-hand witnesses to the love, the dedication, the sacrifices and strength of families. We can walk alongside families, but they are the ones that have to walk that journey and they inspire me. Daily.
I used to get offended when people would see carrying toys to a child’s room, or playing cards or making play dough with a child, and they’d say, “Gee, I wish I got paid to play all day. You went to college to learn how to do that?” I would always want to reach out and with all the love in my heart, smack them upside the head and tell them about all the other parts of my job, but I never did. I’d just smile and tell them that I have the best job in the world, because I do. I’ve learned in all of my years in child life what is important; what is most important is the relationships that you build with people.
I remember one time I saw a patient out in “the real world” and she was with a group of friends. She was so excited to see me and introduce me to her friends and I was happy to see her out in her natural environment just being a teenager. This particular patient was a teenage girl who I’d done some pretty “intense” child life interventions with. She’d undergone nearly a year of chemo and had an extensive surgery to remove a tumor from her leg. She’d been confined to a wheelchair and on crutches for the duration of that time. We spent a lot of time talking about “medical stuff,” how much cancer sucked, and had done a lot of fun things together, because after all, “play IS a child’s work,” no matter how old they are. When she introduced me to her friends, she didn’t say, “This is Debbie, the child life specialist who taught me about my surgery and helped me afterwards.” She said, “This is my friend, Debbie. We used to bake cookies when I was in the hospital getting chemo. She was my child life specialist.” That was one of the most influential moments of my career. No longer do I choose to be offended when people say, “You get to play with kids all day?” That defined for me the very essence of why I come to work every day. It’s all about the relationships we build. While we baked cookies, or played cards, or played Guitar Hero (which I was pretty good at for an old lady), we were building and nurturing that relationship. It is sometimes because of those relationships, that
I’m able to find out a piece of information that maybe that child hasn’t shared with anyone else yet. If that piece of information is something that needs to be addressed, I can tactfully and without breaching their trust, find some way or some one to address it.
Sometimes we just can’t do anything to make someone feel better and nothing hurts your heart more than that. What I’ve found is that sometimes it’s just doing those little things to make someone smile, or maybe even just your very presence, that matters the most. Sometimes it’s just skipping into the treatment room with a basket of snacks and armed with a witty comment that brings a smile.
Sometimes it’s just sitting silently in a room with a family when they get bad news. Sometimes it means being a cheerleader, or a surrogate parent, or a mentor, or a playmate. Whatever it means, it’s based in building that relationship. I’ll end with my favorite quote:
One hundred years from now,
It won’t matter what car I drove,
What kind of house I lived in,
How much I had in my bank account,
Nor what my clothes looked like,
But, the world may be a little better,
Because I was important in the life of a child.