6 Life Lessons from Working with Children Facing Life-Threatening Illnesses

“There is beauty to be found in the pain. Life is brutal, but it’s also beautiful. Life is Brutiful.” ~Glennon Doyle

For four years, I had the honor and privilege of working with children and families in a hospital setting, with most of my time spent in the hematology/oncology department.

My role as a certified child life specialist was to help prevent and alleviate the stress and trauma of the hospital experience utilizing developmentally appropriate preparation, education, and play. Or at least that’s the “elevator pitch” I would provide during small talk and to casual acquaintances at parties.

The truth is, it is almost impossible to put into words the uniquely brutal and beautiful experience of walking closely beside people during undoubtedly the most trying time of their lives. The families I got to serve throughout that time left a permanent mark on my heart and have forever changed the lens through which I look at life.

Here are six of my biggest takeaways.

1. Don’t take anything for granted.

It’s one life’s greatest ironies and also greatest tragedies: that it often takes the removal of a simple pleasure to truly realize its value. Sleeping in your own bed. Breathing in fresh autumn air. The ability to walk and work and go to school and play and move your body (mostly!) the way you want to.

Do you ever find yourself complaining? About the weather? Traffic? Bills? Your child’s picky eating or refusal to put away their toys? Life-threatening illness has a way of putting things in perspective. What really matters? Often the very things we complain about contain a blessing within that we would greatly miss should it be taken away.

I often remind myself that (God forbid) something should happen to my partner, I would long to hear him snoring loudly next to me or to see his laundry piled up next to the basket instead of inside it (cue eye roll). Watching so many sweet souls fight for their young lives has eliminated my ability to complain about virtually anything—because it truly is a gift just to be alive.

2. You are stronger than you think you are.

Most of us have no idea how much we are capable of until we have no choice. We don’t know how we could possibly face life’s greatest hardships until they are right in front of us, staring us in the face. We may be trembling with fear, paralyzed with disbelief at the path ahead, certain that it will be the end of us. But then, something clicks on inside and takes over that is bigger than our doubt and fear.

We human beings are an astoundingly resilient and adaptable bunch. Yes, even (especially!) kids. Some of my fondest memories are those sacred moments spent honoring a child facing their fears in the most extraordinary ways, with more courage than is reasonable to expect of them. They continue to inspire me to find that same grit within myself whenever the going gets rough.

3. It’s okay to feel your feelings.

I will never tell you to stop crying when you’re sad. I will never tell you that it could be worse, so buck up. I will never tell you “It’s okay” when clearly, it’s not.

I’ve noticed that some of us adults have a hard time allowing not only our own feelings, but the feelings of others as well. I believe it is our own discomfort with unpleasant emotions that sometimes causes us to respond in ways that invalidate the experience of another person—child or not.

After witnessing dozens of rough IV starts on panic-stricken kids, I can confidently say that telling a child they shouldn’t be scared and to stop crying makes it about a billion times worse.

What does help? Validating the feeling. Holding space. Telling them it is okay to be scared—that’s normal! That it’s okay to cry, and that crying can even help us calm down. Reminding them that they can be brave and scared at the same time. That we believe in their capability. That they are not alone, and there are hands to hold. That something good is waiting on the other side of this challenge!

As a self-proclaimed “recovering perfectionist,” I didn’t realize at the time how much I needed to hear these very same messages myself.

4. Humor and play are necessary for survival.

When I was an intern on the intensive care unit, for the first couple of weeks I felt like I needed to speak in hushed tones and tiptoe around. A big part of my job was to provide opportunities for recreation and play, but I had a hard time reconciling fun with the somber atmosphere of an ICU.

It didn’t take long for me to see that no matter what situation they’re in, kids are still kids. Even on some of the worst, sickest days, my patients would delight in the therapy dog’s cuddles or even a well-timed fart machine prank. These silly, light-hearted moments were a welcomed reprieve from all the seriousness and were sometimes the only touch of normalcy within that family’s day.

Never underestimate the healing power of a playful attitude and sense of humor, no matter what adversity life is throwing at you.

5. Life isn’t fair.

It has become a cliché and often unwelcomed response to grief—that “everything happens for a reason.” And while I do personally believe in a divine order to things, I have also come to know that this belief does not make us immune to the pain we experience when we are dealt those especially harsh hands. Because reason and emotion do not live on the same plane.

Reason tells us that loss is inevitable. That we will all lose our parents, possibly our spouses, and that this world is also cruel enough to take children. We can rationally conceive of this. And yet, if faced with the thought of losing ourchild, our parent, our beloved, we cannot bear it. We suddenly question God. The Universe. Others. Ourselves. We throw our hands up in despair at the audacity!

And yet, painfully, atrociously, all along, haven’t we heard these stories? Haven’t we empathized with these headlines? Only now, the story is ours.

We are all, at some point, going to be put through mighty trials. And while those trials may look different, this is a law of life. We don’t always have a choice in what comes our way, but we can always reclaim our power in the way we choose to navigate it, and the meaning we choose to make out of the experience.

6. Brutal and beautiful can co-exist.

I always found it hard to answer when people asked me if I liked my job. The immediate response was always a resounding and emphatic YES. Playing this role was my absolute dream, and something I worked incredibly hard for. I found tremendous joy, fulfillment, and satisfaction in it on a daily basis.

But I had to bear witness to things that still make my soul ache on a daily basis too. Things that would sometimes cause me to sob in my office between tasks or on my drive home. Moments that weighed so heavily on my heart, I found it difficult to “turn it off” when I got home, to be present for my own life and the people in it.

That contradiction existed in nearly every moment of my work. Am I having a blast, laughing up a storm while playing syringe water guns with an eight-year-old patient? Most definitely! Does it shatter my heart that he has to be here at all, let alone for the past ten months straight? Absolutely.

I’ve come to accept that life itself is this messy, ever-changing blend of brutal and beautiful. Good and bad, high and low, all swirling together to make up the human experience. The trick is to seek out the beauty in any moment we happen to be in—and if it’s nowhere to be found, it is up to us to create it.

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