Photo: Courtesy of Nancy Netherland
We all have our breaking points. Mine came on the day when I thought the magic of childhood had ended for my two daughters.
My older daughter, Sarah, then 7, was losing ground to the viral hepatitis she was born with. The inflammation in her liver was causing fatigue and, at the same time, her viral load had rapidly increased. No cure or effective treatment was available yet for someone her age. I had contacted research facilities across the country, but all we could do was wait for new drugs to be developed that were ready to test on kids. My younger daughter, Lala, had fallen ill with what I had optimistically hoped was a very bad case of normal-kid crud. But it turned out to be something far more serious. I was on the phone with her paediatrician, learning that the unidentified illness that had left her so frighteningly thin, her mouth filled with ulcers, her body listless and in pain and her inflammatory blood markers skyrocketing was, as the doctor said, “something to be very concerned about.”
So there I was, my worst nightmare coming true: Both my girls were sick with rare diseases with no effective cures, no treatment plans and no road maps to recovery. Halfway through the call, I found that I could no longer remain upright. I slipped to my knees and, when the paediatrician hung up, slid to the floor, paralyzed with fear, heartache and worry. It all seemed too impossible and too unfair to have two young kids so sick. I lay there on the hardwood floor—for at least an hour, maybe longer—until the tears stopped and I could once again feel my breath fill my lungs.
Then, a strange thing happened. As I lay there, I realized that if we were to make it through this—or even just make it through the rest of the day—I needed to take a different tack. I couldn’t stay like this. (That’s the great thing about breaking points: They offer us a chance to reassess and rebuild.) I vowed, then and there, to embrace the normal, despite our family’s extraordinary status. The magic of childhood wasn’t ending; it was just changing. It was like alchemy—I realized I had an opportunity to transform the unknowns and fears into enchantment and whimsy. Now more than ever, I would need to shower my girls with magic.
Lala, now 9, is living with a rare, often debilitating and complex medical illness—a rare, systemic auto-immune disorder that causes high fevers, chronic pain, wasting and inflammation of her gastrointestinal tract, joints and eyes and makes her feel so fatigued that she often sleeps 20 out of 24 hours. Last year, Sarah, my 10-year-old, completed a successful, experimental drug-dosing clinical trial. I am told that she is cured, but she will still need biannual blood tests and liver scans as part of an ongoing, multi-year safety study. While the impact of the test drug on her fertility and growth are unknown, her elevated risk of liver cancer is clear. Lala still endures test after test, with dozens of medical specialists trying to manage the evolution of her illness. And while some of those procedures are routine, others can become complicated all of sudden, like last month’s MRI—scheduled for two hours, it stretched into 12 hours and required an emergency intubation.
They are not having your typical childhood. Last month, the girls and I counted 28 medical appointments on the colourful chalkboard calendar we use to chart the course of each month. But I’m making sure that it’s memorable and as full of as many sparkles as possible.
Wherever I can, I sprinkle fairy dust and glitter to transform the sterility of the medicalized parts of their life. And whenever I can, I try to find the grace in letting go of “things going as planned.” We adhere to the philosophy “eat the cake first.” Simple, brilliant and effective, this sweet philosophy is guaranteed to preserve the magic of childhood, no matter what the circumstance. This means not only literally eating the cake first but also celebrating every moment, no matter how unexpected or mundane, mindfully enjoying the time we have together and actively looking for whimsy and charm in every setting. We christened our house the “mermaid manor,” glitterized the pill bottles and turned the dining-room chairs into thrones.
Lala has taken to wearing party dresses and jewelled shoes to most appointments while I tote her medical records in a glittery binder. For procedures and scary appointments, we don superwoman capes and costumes, bring our mermaid-tail blankets, pack gratitude sticks and mermaid tears (games we’ve created to play during appointments) and get our playlists loaded so we can hold dance-offs to the Trolls soundtrack in the exam rooms before the proceedings begin. Prior to overnight stays, we plant glitter in the garden, only to arrive home to sparkling plants and glimmering seashells, lovingly placed by friends in the garden—further evidence of mermaids and magic. And, at least once a week, we eat cupcakes for breakfast.
Embracing this philosophy also means that I don’t sweat the small stuff nearly as much. I used to work myself into a near frenzy trying to make sure that the kids were never late for school, their homework was always completed and their backpacks were organized—all while working full-time.
One of the upsides of having our lives hijacked by illness and medical appointments is that I am much more in the moment now. Instead of stressing about the kids being 10 minutes late because it took longer than usual to administer morning medications, I focus on how awesome it is that they are both well enough to go to school that day. And sometimes we even add five minutes to the “lateness” and, as a family, write gratitudes to add to our gratitude jar. It’s good practice. Several weeks ago, things went very wrong during a procedure and it was incredibly comforting to know that, immediately before I was rushed out of the room by doctors, Lala and I had made the most of each moment, holding hands, singing favourite songs and talking about how much we loved each other.
Recently, Lala roller skated her way down the cheerfully painted hallway of the children’s hospital. With light-blue padded headphones dwarfing her small face, she smiled broadly as she bobbed and weaved around, listening to her favourite song. We were exiting the geneticist’s office to go to the lab for more tests, the long corridors that once proved daunting now transformed by roller skates and music.
It’s hard, scary and exhausting not knowing what pain or hardship lies ahead. And, while glitter, cupcakes and roller skates won’t eradicate that, they spark joy and hope—and that is what really matters.