Every month is an awareness month. It takes only a particular number of signatures to make it so. This month held two foci of importance to me. May 2-10 was Cleft Lip and Palate Awareness Week. May 15 is Anencephaly Awareness Day. My son was born with a gaping hole dividing his upper lip and roof of his mouth. My daughter was born without a brain.
As I turn these over in my mind, I recall my conversation last week with Melissa Marceau who runs Miss Potts Attic with Bobbi Saenz. “Adapt or die,” she said. I chuckled to myself. Yes, adapt or die, that was my motto in those early days when my son was born.
Each time he woke, I fed him with a cleft specialty bottle, managed his spit up, set him down somehow or handed him off and pumped for the next twenty minutes. He failed to thrive for reasons unknown at the time and our life with a medical baby began. He visited the ICU twice, and lived the rest of the time off and on in the TCU, the transitional care unit, a world in between ICU and the regular floor.
His sodium levels were dangerous low. He could not gain weight. He went on TPN, total parenteral nutrition, bypassing the gut system’s method of extracting nutrients from the food to the blood and putting all that good stuff right into him, intravenously through a central line catheter.
This open access to his blood system means we live with the daily risk that he will develop a blood infection, nose dive, and end up in the hospital on fierce antibiotics trying to rid his body of this evil thing that could kill him quickly. In his routine care, those thrice daily medical activities, there is risk. As temperatures swell, and the dressing covering his site where this catheter enters the skin loosens from the sweat that is part and pare of living in California, there is risk. In the normal household hustle and bustle of family life, scissors smuggled into the bedroom by another child, there is risk if the kid gets too curious.
But “adapt or die,” I said. I could crawl into a hole of depression, or we could find a way to live.
Fast forward; the boy is now four and we live in two worlds. One foot stands in the world medical gloves, masks, sterile procedures, weekly conversations and shipments from a pharmacy in Sacramento, eyeing his dressing on the hotter days, acting as if the older brother had punched someone in the face when we find those smuggled scissors, dancing with a medical pole, and crawling out of bed in the night to tend to a medical pump.
The other foot stands in the world of a four-year-old boy, a bundle of raw emotions, good humor and physical reactivity. He is absolutely normal, drawing on walls, putting underwear on his head as a hat, telling me “I like you, mommy” every couple hours demanding the response “I like you, too,” and chasing the cat around to give it love or pull its tail, which to a boy are about the same thing.
After watching the international news in January and February, I watched as locally our society fell to pieces in March and April. Now, we are beginning a new normal, living with risk. You can live in two worlds: one with this shutdown on your mind, masks, hand washing and another with all those things that make life good, energizing and livable. You can persist in the former with dread of another wave, checking statistics, refraining from even those things you might need to maintain relationships or good mental health. Or you can throw caution to the wind in order to obtain the latter. But both are possible. Caution without forgetting what we need to live life beyond survival mode, but doing so with more awareness. So I decided to add a weekly phone chat, horseback riding and a driveway conversation with a friend.
What can you do?
Kathryn is a Northern Californian wife, mother of five children on earth and three in Heaven, speaker, newspaper reporter, columnist and author of Journey in Love: A Catholic Mother’s Prayers after Prenatal Diagnosis and upcoming book, Peace in Pregnancy: Devotions for the Expectant Mother. She splits her time reading, writing, homeschooling, attending to her Peter’s medical needs, and shuttling him to appointments at University of California San
Francisco while listening to her favorite podcasts. To read more of her writing, go to www.kathrynannecasey.com where this post first appeared.