One of my first despairing cries when the kind young doctor told us our nine month old son certainly had cystic fibrosis was, Oh dear God, my baby’s going to die. Indeed, it was all I could think of those first foggy day and weeks (probably even months). My baby’s going to die. My baby’s going to die. My baby. . .
And then he wasn’t a baby anymore. He grew into a toddler like any other toddler. He yelled No, No, No with all his might. He swallowed his medicine-laden applesauce. He watched Little Bear DVDs during his thrice daily pulmonary therapy sessions (patting all over his chest and back to loosen thick mucus for coughing up). He ran from me naked and peed on the floor. He occasionally was hospitalized with IVs. He learned colors, letters, Mama, Daddy. He was cute. He was naughty. He did need extra care to be healthy, but he definitely was not dead.
Numerous hospitalizations throughout the years do stymie some developments that experts like to point out on those charts that petrify new parents ; they also boast some developments - ones that are more complex to quantify but are the stuff of a real, good life. He did figure out how to walk; who cares when? He fought on and was strong. He did achieve a black belt; who cares that kids he’d begun with made it a year earlier? His triumph took longer than the others’ but he prevailed. He played well the cards dealt him, as we all must. I admit that parents of chronically ill children feel a strange mix of swagger and humility at their victories. They’re sweeter. More costly. Accomplishments, I propose, should be measured by depth as well as height. Thanks to CF.
Slowly, over the years, our perspective shifted.
The pulmonary therapy sessions, once such an imposition, have forged a close relationship that remains to this day. The high nutritional standards, once such a stressor, have forced me to research and refine my culinary skills. The logistical logjam of hospitalizations, once such a confusion, has created a certain comfort level in that setting. The existential anxieties, once such a depression, have demanded discussion of the tough topics. Appreciating these silver linings has enlivened our family, from good cooking and stronger bodies to spirited conversations and an easy-going lifestyle. We had more babies and had more fun with them. We saved less money and went out for more ice cream. We dug deeper into our faith, looking for a fix and discovered profound purpose and consolation. Are we sadder? Sure. But we are wiser and more understanding. Thanks to CF.
Does this mean we take our wisdom and float along with folded hands? Absolutely not! We write letters requesting research monies; we volunteer at fund raising events; we sign up for walks and drug studies and surveys; and we Talk. Some things we know more about; some things less. In some ways our world has shrunk to just our family; in some ways our world has expanded to include other people, organizations, and ideals. Thanks to CF.
Now seventeen and the eldest of seven, he is the family favorite. The kids all think he is so cool. They pine for his super bedtime snacks: a shake, a pile of cookies, Ramen noodles, and yogurt is a regular tray full. When IV necessities require a two-week hospital stay, they are green with envy: he gets a television in his own room! He gets whatever food he desires delivered six time a day! He gets to handle his own needles! We construct a chart to organize who spends what time there, ensuring no one gets gypped in visits with the biggest brother. He is the king. Thanks to CF.
So we hope and donate for a cure; and in the meantime, we live our good, new, normal life. Every one of us, CF or not, must march on and make our way with our own unique set of talents and troubles. That march could be more like a tiptoe. Or a bayonet charge. Or a shouldering by friends. We push ourselves this way now. We encourage all our children this way now. We see other people this way now. Thanks to CF.