When Illness Consumes Your Life, You Fight
How Cystic Fibrosis Trained Me For Overcoming & Living
When Illness consumes your life, you fight.
When a child’s illness consumes your life, you fight.
You fight even harder.
That’s what I did for a very long time.
Long before I knew the illness had a name, I fought. I fought doctors weekly, if not daily. I fought church members, family, and friends who did not understand and who did not live with my little ones to be any damn expert.
All these individuals gave me advice. They did not ask if I wanted their insights, or cures, or testimonials of what they did when they were in my exact situation, or not. They merely assumed my ignorance and declared their knowledge as though they had advanced degrees in madly mothering my mercilessly medicated, miserably ill minors.
My minors.
My own.
Not theirs.
Not theirs who slept sweetly through the night, in their cots and cribs and beds. Mine didn’t.
Not theirs who nursed on their mothers’ breasts, contentedly gained weight and showed off on the percentile charts at their pediatricians’ offices. Mine didn’t.
Not theirs who eliminated and evacuated in beautiful streams and diaper deposits fit for pictures, magazines, YouTube videos, and displays in museums. Mine didn’t.
Not theirs who weaned well from breast milk to baby formula to solid foods and only knew to grow. Mine didn’t.
Not theirs who exchanged sneezes and coughs and countless molecules of germs, viruses, and bacteria with other children, played in mud and ate it too, and stood as little Hulks, or Supermen, or supervillains who always conquered, always won, and always returned stronger for the next fight. Mine didn’t.
Not theirs who entered Pre-K and Kindergarten and proceeded to get every damn 100% attendance award every year for the next 12–13 years. Mine didn’t.
Not theirs who did not cry regularly, asking, “Mummy, why am I so sick all the time?” “Mummy, why can’t I eat the same things as my classmates?” “Mummy, why didn’t I get invited to the party too? Everyone else did.” “Mummy, why couldn’t I have some of John’s birthday cake and ice cream at school, today?” “Mummy, how come I have no friends?” “Mummy, what took you so long? I thought you’d never get here and I was going to die in school.” Mine did.
Mine did.
Both my sons did.
Fighting Against
And in those years, as a mother, I fought.
I fought against the ignorance of those who knew little but babbled much.
I fought the failings of doctors and specialists who would give no diagnosis for 14 years for one son, and 18 years for another.
I fought aloneness and loneliness through the loss of friends, who gave up on me or who I chose to avoid because they unknowingly and/or stubbornly added to my constant stress by giving me useless advice. Advice that I had tried countless times and prayed to God would work, but wouldn’t. I learned to not talk because of these friends. They meant well, and I loved them, but sometimes in fighting against, there is no time, or place, or energy for friendship. Sometimes all one can do is hunker down in the trenches.
I fought self-blame and shame. It had to be my fault. Right? It had to be that I was a failure.
I fought my husband who was jealous of the time I spent with sick babies. His babies. Our babies. Babies who needed intensive care and isolation at home, and many precautions and protections outside, to grow into young children who are now young men.
I fought the isolation of life at home caring for my babies and children alone while my-then-husband worked, socialized, lived on his computer, and sang angelically but too loudly and eventually too often, practicing for Sunday worship, that I often missed. We just needed quiet and sleep sometimes. I only needed silence and slumber sometimes.
I fought with too many others, explaining, re-explaining and re-explaining what to do to keep my boys safe, healthy and alive. I struggled on paper by writing things down in the desperate hope that people would understand and I could stop explaining so many times.
I fought the failings of doctors and specialists who before and after-diagnosis would reprimand me, telling me all the things I was not doing, and not doing right. Never mind that I could diagnose at a glance when my sons had pneumonia, or which lung was filled with fluid, or when they were oxygenating at levels within one percentage point of the numbers the doctors needed their expensive diagnostic machines to tell them. Never mind that those same doctors would remain incredulously silent when my diagnoses were accurate 100% of the time.
How I Fought
I fought by growing strong and reminding some of those doctors that they were in the business of providing care, not causing harm. I even had to write to one or two about how the ethics and humanity needed in their professions were severely lacking in their practices.
I fought by gaining self-confidence and doing what I needed to do for my sons’ care and well-being, regardless of what others said, and thought, and counseled.
I fought by learning patience and long-suffering through diagnoses that were almost two decades in the making.
I fought by developing an ever-deepening appreciation for every moment of life and the teachings of selflessness that was my daily education.
I fought by understanding that this was my life’s work and by making all the accommodations I knew how to prepare for every stage of it.
I fought by remaining a fierce mother and not cutting my sons any slack with school, following rules, homework, and anything that called for them to be responsible. No slack. Just stand and attack (fight). Had I joined the military, boot camp would have been a breeze.
I fought by learning to control what I had the power to control and by releasing anything I could not. It was and still is all a matter of choice.
I fought by having gratitude for those who understood or at least respected when I did not gather for social engagements, who did not advise, who listened, who carried my sufferings as their own, and who merely loved me through the pain I bore daily.
Today
Today, I don’t fight so much. I don’t fight much at all.
My sons are young men. They handle all their medical appointments, from scheduling to showing up. They order all their medicines and therapy equipment. They are responsible for all their physical care practices to keep their lungs clear and their bodies as healthy as possible.
My phone does not ring so often, and I don’t panic every time it does, wondering what doctor, or hospital, or insurance company, or therapist is calling me — or what same-as-yesterday medical emergency someone is calling to tell me about so that I have to leave work yet again.
Today, life is different because of age; choices about my environment, work, and relationships; having been seasoned by children’s illnesses that long consumed my life, and having learned a different kind of fight via the long road towards peace. Today too, solitude does not feel lonely anymore; it’s just rich in its self-care.
Today, the reality is that the life expectancy for Cystic Fibrosis (CF) patients is expanding. Just yesterday, I virtually met three people, ages 73, 75 and 78, with CF.
Today, my heart is enlarged with gratitude for those who understood without understanding, who loved rather than faulted, who listened rather than advised, who quietly stood in the trenches of prayer for my sons and me and who still do.
We all have to fight, but eventually, we overcome. We live.
