How Come You’re the Only One in this Family Who’s Never on Vacation?
In December 2002, during the Christmas vacation, Nathan, age seven, walked up to me, firmly positioned each hand — in a fist — on each hip and with feet nailed into the floor, questioned, “Mommy, how come you’re the only one in this family is never on vacation?” This natural communicator once again sat frozen in the amazement and speechlessness that comes with the profound revelations that children, innocently and wiser than the hills, inevitably make. He was right. 100% right.
From birth to age three, Nathan was chronically ill. He coughed constantly. Respiratory infections saw Nathan as rich land, and like virgin territory imbued with great nutrient deposits, they surveyed and drilled his little body and pumped life out of him over and over and over…. The doctor’s office and emergency room saw us weekly, many times more than once. The receptionist knew me by voice on the phone. From infancy, Nathan lived on antibiotics and liquid albuterol. Soon came the nebulizer and other asthma medications. And the moment he was exposed to people, another infection would germinate in the fertile soil of his lungs.
Nathan also had severe food allergies. Allergic even to breast milk, he would projectile vomit, at times across the room as though aiming for some invisible bulls eye. I changed my diet. Gave up many things I loved eating. For a time, it seemed that I existed only on yogurt, non-citrus fruit and salads. It was a pointless sacrifice. His persistent case of colic remained. The only thing that somewhat worked for him was being upright… so during the day he lived as my symbiote, reaching for life, upright from my hip. And during the night, he found moments of rest — upright — with his head on my chest or on my shoulders. Later, it was his stomach that sat on my shoulders. In three years, I only dropped him once. Ah… and so we are thankful for small mercies.
As a mother, I understood selfless love. As a mother of a chronically ill child I understood sacrifice. Only Nathan mattered, and his dad of course, who too had battled severe asthma all his life. As a mother of a child who was persistently ill and there were no explanations as to why, I understood frustration to a new degree. I knew worry every time Nathan coughed. I knew fear, every time I saw the glassy glaze that so often filmed his eyes. I knew desperation every time he had a weigh-in at the pediatrician and he had not gained an ounce, or in fact had lost. I knew panic every time we had to be out in public… because I knew beyond a shadow of a doubt that in 24 hours he would be ill again. And I was right every time. 100% right. I knew terror, every time I watched the sunken black pools around his eyes, and his countenance’s bluish confusion as his chest fought to expand to suck in a few molecules of oxygen. I knew these just about every day. Every day.
I also knew the loneliness of caring for a persistently ill child. By the time he was one and a half, I quit my job to stay home with him. I was forever calling the Chase Branch in Castle Hill, Bronx, anyway to say that I could not come in because my son was sick. Nathan’s dad worked in the school system. Tuesday night prayer meetings at church, Thursday night choir practices, and Sunday services consumed many additional hours, as well as the college classes which dad took off and on. As Nathan’s primary caregiver, I often remained home with him.
Leaving my job also meant increased financial pressure for our small family. I remember at one point, and out of sheer desperation, deciding to apply for food stamps. After a review of the submitted paper work, I was told that our family earned $1.00 more than the monthly limit to qualify for food stamps. My desperation turned to utter disbelief. “But how am I going to feed him?” I said, voice cracking with a new level of fear. There were days that the cupboards and refrigerator were both bare. I recall one day that Nathan, not yet age three, asked for orange juice and I replied, “We don’t have any.” “Apple juice?” He modified his request. “No love. We don’t have that either.” “You have orange?” He meant tangerine. Nathan loved those. “Sorry sweets. Mommy does not have that either.” … “Well… What do you have?” he gently asked wide-eyed. I replied, “We have milk, water and crackers.” That day, we went out and I sold my one materialistic possession — a $169.00 gold and amethyst ring I had purchased 4 years earlier — for $17.00. Nathan needed more nourishment choices than milk (which made him sick), water and crackers.
After age three, Nathan continued to be ill, frequently. By then he was walking and talking. We also had another major break through. Nathan did not have to sleep upright anymore. He, finally, could sleep throughout the night, every night, horizontally, in his own bed. And I could sleep, horizontally, in mine. With caring for my growing family (Nathan’s younger brother, Caleb, came along when Nathan was four); working again; husband attending college and/or working a second job and unavailable when home, sometimes due to chronic back problems and asthma, I felt everyday like I was not on call, but on duty 24–7. Later, I juggled care for both Nathan and Caleb, with work and college courses of my own, and family responsibilities, which were chiefly mine: food shopping, cooking, cleaning, laundry at the laundry mat (children in tow, of course), transportation to and from school and babysitter, the budget and re-budgeting of the budget whenever it went awry, and every other demand of daily life.
According to the Cystic Fibrosis Foundation, “about 30,000 people in the United States (70,000 worldwide) (http://www.cff.org/AboutCF/Faqs/)" have the disease. For these 30,000 living with the disease, their challenges are many and often times insurmountable. For these 30,000, their family members are also living with the disease and its effects, whether they have been diagnosed or not. Of the primary caregiver of each young child with Cystic Fibrosis please do not ask, “How come you’re the only one in this family who’s never on vacation?” Let’s learn from Nathan and instead, ask ourselves, “Should he or she be the only one in this [or that] family who is never on vacation?” Then do something about it. Provide a vacation. The gift of a few hours of uninterrupted sleep is a beautiful thing. The gift of time to sit and have meaningful adult conversation, not at home or in a doctor’s office or in the emergency room, or about asthma, or infection, or digestive problems, or Cystic Fibrosis, is priceless.
Originally published on October 20, 2014 @ Thecfofcf.blogspot.com
