How I Navigated My Daughter's Cancer Diagnosis
When my daughter was diagnosed with Burkitt's Lymphoma/Leukemia at six years old in August 2017, caring for her took the driver's seat in my life. I spent my days researching the medicines that were being pumped into my baby and communicating with family members and friends about the latest developments to her health. Taking care of myself mentally and physically was not my priority but I needed to make it a part of my life again to be the best medical-mom to my daughter.
Well-meaning people suggested I practice self-care by taking time away from my child. That's impossible since you can't leave a six-year-old alone in the hospital getting chemo. What I learned in the hardest way possible was that we don't have to peel ourselves out of our lives in order to build a mindfulness practice.
One of the ways I was able to put one foot in front of the other was to do just that. Feel my feet on the floor. Notice how I would shift my weight from one to the other. Discover the sound my wet boots made on the brightly colored, clean shiny tiles that lined the hallways in the pediatric oncology wing. Thinking ahead, about what could happen, was terrifying. Thinking back to my sweet healthy kindergartner just a few weeks before was heartbreaking. The best place to be—even though it was horrible—was in my feet, in my boots, on the colorful tiles taking fourteen steps down the hall to the coffee machine.
The strategies I've used to stay in the moment while awaiting CT scan results for my daughter are the same strategies I use when my four-year-old son has a meltdown—stress comes in all shapes and sizes. Here are some ways to shift into mindful moments of self-care and relief during crisis moments as well in regular daily life. These sensory-based activities can be done with your kids or alone.
1. Taste: Eat a Raisin
Take a deep breath before you begin. Place a raisin on a napkin and look at it. Really look at it. Imagine you have never seen one before. Notice its color, size, shape, and texture. When you can no longer resist it, pick the raisin up. Does it have a smell? How does it feel in your hand? Can you roll it around your palm? Or does it stick? Put as much of your focus on the raisin. If other thoughts come into your mind, kindly release them or remind them to drift along while you investigate this small, foreign object. After a few moments of this put the raisin in your mouth…don't chew it yet! Let it travel around your mouth. How does it feel sliding against your teeth? Is it squishy or a little bit tough and solid? After another moment, go ahead and chew it. Does it make a sound when you do? How does it taste? Notice all the muscles that are working when you chew. How do your jaw, neck, and shoulders feel? After chewing for a moment, swallow the raisin and see if you can feel it sliding down your throat into your esophagus and make its way to land in your stomach.
Take a deep breath. How did that feel? This is a great one to do with your child after, not during a tantrum.
2. Scent: What is that smell?
Years ago, I was visiting a friend in Holland when her young son came running from the other room shouting something in Dutch. I asked my friend what was wrong. She told me, "He's saying, 'I need a scent.'" I giggled as she opened up a bottle of vanilla extract for him to sniff. He took a deep breath before happily skipping off to play. This young child was deeply comforted by good smells and knew to ask for them. How astounding! Many years later, my own sense of smell has become quite robust and I often find myself needing a scent. During my daughter's cancer treatment, scents primarily from candles, lotions, and essential oils were an easy, accessible for me to shift my mood and perspective.
The following game can be played with young children with adult supervision. Some people are extremely sensitive to smells, so be sure not to put anything too close to your child's nose.
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Cover different essential oils with black paper and place numbers on the bottom that correspond to a list that tells you what is what. Take turns guessing what the smells are. Ask your child which ones they like best. See if they can tell you why. Ask yourself the same question. Notice if there is anywhere you feel it in your body when you inhale a delightful scent? Do your shoulders release a bit? Perhaps you feel a little more awake? Or a little calmer? There are no right or wrong answers, just a way of finding ourselves in the moment we inhabit by way of our senses. Some simple scents that can be playful and energizing are orange, vanilla, rosemary, lavender, mint, and eucalyptus.
3. Touch: Refuel your sense.
Many parents of small children report being 'touched out', meaning they spend so much time every day carrying, hugging, wiping, and tending to the physical needs of others that they don't want to touch or be touched. Medical parents or parents of kids with special needs may also have an intensity around their sense of touch. However, there are ways to refuel our own exhaustion by exploring our sensory activities that bring you into the moment and out of your stress.
As fidgets and manipulatives find their way into schools, therapist offices, and hospitals, we know that having something to do with your hands can be a helpful way to organize and regulate one's nervous system. Touching things with your kids —playing with sand, clay, and finger paints-—can make a mess. But at least try spending a few minutes letting your sense of touch guide you. Get into the slime! Let the Beyblades rip! Stick your hand into a vat of Legos! Other ideas: Playdough, clay, dry pasta, ice, water, and cotton balls.
4. Sight: Find some eye candy.
When my kids are losing their cool we use a glitter jar or snow globe as a way to calm down. They sit and watch the colorful glitter drift to the bottom of the bottle. Another kid-friendly visual way to access mindfulness is by coloring. What colors do you love? What is your favorite color today? Do you prefer crayons or markers?
Another way to get out of your head during a stressful moment is to delight in someone else. Look at them. See them. Soak up their differences their uniqueness. Can you imagine doing that on the subway? Yes? Well, then do it! (Don't be creepy though.) Allow yourself to delight in others. Wonder about them? Are they hungry? Do they have love? Are they funny? Who makes them laugh?
With your child, perhaps have a staring contest.
5. Hear: The Sounds of Silence
Close your eyes and simply listen. What do you hear? Can you discover ten sounds in the silence? How about twenty? Dive into the silence and the negative space between sounds. Allow any active or agitated thoughts that float into your mind to drift away like clouds. Your thoughts think they are there to help you, they don't know you are trying to take a break from them. Without any judgment to yourself or the thoughts that come up, see if you might be able to left them float by. Meditation is a practice and no one is perfect.
6. Connect: Craft your Community
Yes, technically, there are only five physical senses but there is another that is just as critical. It is our sense of community. We are not built to go it alone, especially as parents. As much as I long for twenty-four hours of solitude to recharge and restore, I know I would be bereft without my peeps. You don't have to join a meet-up group or take on a new hobby to find your community. By being here (you know, on earth) you are a part of a community. The people you pass every day—they are a part of it too. It wouldn't hurt any of us to take care of each other a little more. To smile, say thank you and, maybe, when you see someone having a hard time with a crying child who won't put on their shoes, tell them, "You've got this." Wouldn't that be nice to hear?
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To support pediatric cancer research at Memorial Sloan Kettering Cancer Center, you can donate through Jessica's fundraising page here.