“I Want to Help Nora”

I push myself deep into a cluster of pillows that make up our outdoor patio furniture as Everett, my four-year-old son, climbs over my lap and tucks himself in tight next to me. I reach for my mug of piping hot tea as Tamara Levitt, a regular meditation guide on the app Calm, strikes up a conversation with Percy, the No. 6 Green Engine from the well-loved franchise, “Thomas the Tank Engine.”

Everett and I have been listening to the Calm series, “Thomas and Friends Learn to Meditate” over the last several months, even before a Child Life Specialist from Nora’s palliative care team met with our family and made this suggestion. The Child Life Specialist explained that when it comes to birth order, children like Everett, born directly after a sibling with medical complexity, tend to be givers, “They have really BIG hearts.” She went on to describe the characteristics and traits these children develop, which can include caregiving tendencies, and advanced social, and emotional awareness. Meditation practice can help children understand and communicate their own needs within a family — this is especially important when a sibling is living with chronic illness, as children may struggle to express their own needs and emotions.

I take a deep breath. Inhale. Exhale.

I glance down at my son; he smiles when he hears Percy’s voice. We lean in close to my cell phone, and listen together as a frantic Percy explains he has a very important letter to deliver to his BEST friend Thomas, but there might be a snowstorm, and “What if the storm slows me down?” I roll my eyes and release a long slow exhale knowing I’m annoyed with the “Thomas the Tank Engine” franchise over the anxiety-producing pressure placed on steam engines, across numerous storytelling platforms, to be both efficient and exceptional. I let out another long, audible, exhale that evolves quickly into something like a dramatic sigh as Everett commands with a smile, “Please be quiet!!!” which makes me laugh, and in an instant, he’s laughing too. Before we know it, our deep long inhales evolve into explosive giggles until we eventually quiet ourselves to hear Percy when Everett says, “Shhhhh, Percy is worried.”

 I stare down at my son as Percy continues to fret, his eyes now wide, and if I had to guess, I would say Everett is worried about Percy’s letter too — maybe even more worried than Percy. I breathe, inhale, exhale, knowing that ever since the Child Life Specialist’s visit, I’ve been holding onto worry too. Not about snowstorms and mail, but about Everett, specifically, about the impact Nora’s medical complexity will have on him.

I close my eyes and think back to an afternoon earlier in our week: Nora’s nurse had left for the day, and Everett and I were reading a book together as Nora dozed peacefully on her floor mat. Suddenly she awoke and began to seize. In that moment, I quickly outlined two choices for my son, “You can either stay here and finish reading this book, or you can help me take care of Nora during her seizure.” I didn’t wait for his reply, instead, I began to lift Nora — I needed to get her, quickly, to her room and an oxygen concentrator, suction machine, and pulse oximeter. Everett didn’t reply at first, but as I lifted Nora, he supported the top of her head with his two hands and said, “I want to help Nora.”

When we got to Nora’s room, I laid her on the bed and Everett positioned himself near her head. I quickly pressed an oxygen mask over her mouth and nose and watched as he leaned in to whisper to his still-seizing sister, “It’s okay Nora, you’re going to be okay.”

Throughout the seizure, Everett monitored the oxygen concentrator and provided me with status reports as the buttons transitioned from orange (under 5L) to green (at 5L). He continued to comfort Nora, provide me updates on the oxygen concentrator lights, and he even adjusted the red light on Nora’s toe (a probe linked to an alarming pulse oximeter) until I administered Nora’s rescue medication. When her seizure slowed to a stop, and she began what would be a full day of recovery, Everett read her pages from Curious George.

Percy and Tamara Levitt are still talking as I slowly open my eyes to glance at Everett. He is watching his belly and practicing what we call, “belly breaths.” He inhales in an effort to create a swollen belly, a belly now comparable to a pregnant mother. I smile, he looks up at me, amused by his contorted abdomen, and together we laugh out loud and watch his belly deflate. I reach for my son, still laughing, and pull him close. He wraps his arms around my neck, and I wholeheartedly promise myself to always make space for him and his needs, which in this moment, happen to be large doses of laughing out loud.