Overcome by the simultaneous loss of the perfect children I'd longed for, and the raw sense of guilt I now felt, I retreated to our bedroom for quite a long time, unable to function, my mind numb and my body racked with sobs. My mother eventually came into the room to let me know the boys were hungry. Even nursing them had been a struggle because they were so weak from maldigestion; it was impossible for me to provide them with enough calories, and we had to supplement with special formula. I felt like a failure, and I didn't want to feed them. "Kris, those boys NEED you, and you've got to get yourself together and take care of them!" she told me. Although Mom was grieving with me, she was quietly exasperated by my self-centered hysterics. In that moment, she taught me more about parenting than she'll ever know: that feeling sorry for myself was not an option, that being someone's mom requires nothing less than selfless commitment, and that there is no such thing as a perfect child.
It's been 21 years since our sons entered this world, and their cystic fibrosis has often been a burden. They've endured a lifetime of having to swallow enzyme capsules with every morsel of food, along with endless respiratory treatments and high calorie milkshakes, hospitalizations, and visits to their pulmonologist, gastroenterologist, nutritionist, and ENT surgeon. Overnight visits to friends' houses always required a great deal of forethought and planning. For twelve years, they had to stand in line each day to receive their enzymes from the school nurse, often having only a few minutes to gobble down their much-needed lunch. School was especially difficult for them, not for lack of friends or being teased, but because they had so much more to worry about than other kids: their health. Having a disease made them different.
Yet, being different has conferred upon Nick and Rory an extraordinary lust for life, a "right here, right now-ness" which only comes from truly understanding the evanescence our existence here on Earth. Unlike most young people, they've had no choice in accepting their mortality. They are reminded of it every day, with every pill they swallow and every breath they take. I believe this has afforded them a special kind of liberation, a freedom to just be, and I am in constant awe of their courage and defiance, their pursuits and accomplishments. Cystic fibrosis is not who they are, nor have their lives centered around this disease. They've done just about everything that "perfect" kids get to do, like camping and hunting with their dad, taking family trips to the beach, learning to play basketball and guitar and bass, and growing up with their cousins. They've gone to wilderness camp, art camp and guitar camp. They've been to Poland, Switzerland, and Canada with our family. They've cultivated life-long friendships, and they've experienced love and loss, triumph and disappointment.
Many Halloweens have come and gone, and they are always bittersweet. The boys' father and I have since divorced, but remain friendly. I sometimes long for the days of treehouses and Power Rangers and baseball cards, for the days when I heard "Mommy" a thousand times, and for the days when I was a starry-eyed young nursing student, pregnant with twins. It seems like a lifetime ago when Mom came into my bedroom, gently urging me to put my sorrow aside, to be the kind of mother she knew I was capable of being, and to go and see about feeding those boys. Without knowing it, she was teaching me the Zen of parenthood: I had to be present for my children. Although my husband and I possessed DNA that proved incompatible, we've given our sons ourselves, taking joy in each boy's life as it unfolds, welcoming each tomorrow we've been granted with them as it arrives. In their own lives, Nick and Rory have embraced this same philosophy, and looking into their clear blue eyes, I can see the gods are smiling.
About Cystic Fibrosis
|Nick & Rory in 1993|
|My father, mother, Nick and Rory in Poland, 2001|
|Self portrait of Nick (left) & Rory (right) with their friends/brothers, Chad & Willie, circa 2006|
|Rory (left, on bass) & Nick playing guitar, 2011|