How My Trauma Response Saved My Sons' Lives
Our trauma responses can have benefits beyond our survival.
PetrBonek | Canva My sons have been traumatized in ways I could never have imagined. They were raised chiefly by me as I tried to overcome my traumas and navigate the new ones to which they (and I) were exposed. It began with the invisible, incurable, progressive illness that was alive and thriving in every cell of their bodies from the moment they were conceived, that was slowly destroying them from the inside out.
By the age of 6, I knew trauma as well as I knew the hallways and rooms of our childhood home. In response to my home experiences, I became the doer, worker, giver, and savior to my mom.
I answered her calls for help and observed her closely to learn her schedule and be there before she needed it so that she would feel loved, protected, and supported — the opposite of how she felt with my dad. I cleaned, learned how to light the fire on the stove with matches, put groceries away, and stocked the refrigerator and cupboards alike.
I did the dishes and laundry, swept and mopped, and climbed chairs to clean the windows. I loved helping my sad, lonely, overworked Mummy feel loved. I was the super girl who saved the day — and Mummy too.
My first son’s birth
After 72 hours of stalled labor, following a long, difficult pregnancy and an emergency C-section because my baby was in fetal distress, he was placed in my arms. Immediately, I knew a love like none other. I also knew something was wrong.
It was a combination of intuition and intrinsic knowledge from having parented my baby sister beginning at age 6. My son was severely jaundiced at birth and put in the neonatal intensive care unit (NICU) for three days under those special Bili (phototherapy) lights.
Nurses brought him to me for nursing, love, and a touch that only a mother’s arms and bosoms could give. Beneath the yellow-olive-greenish look of my son’s skin and eyes, something deep within him looked up at me and screamed for help.
Born ten days post-term, he did not fit the typical pre-term jaundiced baby. His liver should have been fully developed and functioning at his birth weight of almost nine pounds. But his was not. It took months for his jaundiced look to fade, but his abdominal distension, inability to sleep well, severe vomiting, difficulty passing stools, and poor weight gain did not.
Later would come severe allergies — even to breast milk — colic, breathing difficulties diagnosed as asthma, epigenetic wrinkling of his hands and feet, skin rashes, delayed walking, and constant sinus, lung, and ear infections.
Mothering my baby sister
While many things are a blur from the period of my first son’s birth, I remember asking the doctors over and over again about his jaundice, his liver function, his disinterest in nursing, and what I saw as other irregularities in his physical body.
The doctors assured me that all would be well, that jaundice was typical for many babies, and that because I was a new mother, I did not know what a new baby looked like. But I did. I was a mother to my newborn baby sister at 6 years old.
I washed her clothes, bleached her cloth diapers, hung them up with clothes pins on the lines outside to dry, and removed and folded them as I saw my mother do. When I changed her diapers, I placed my thumb on the outside, and the other four fingers of my left hand filled the lifted space between the diaper and her skin to protect her. I then pinned the layers of fabric closed with those giant baby diaper pins and slid the heads down to ensure they did not become unfastened.
I made her bottles on the fire-lit stove, tested the droplets on my lower arm and wrist to make sure they were just the right temperature, picked her up, held her at just the right angle, and fed her, burping her every two ounces, then every four, then six, as she grew on my shoulders, my chest, and in my arms. I bathed her, washed her hair with Johnsons’ Baby Shampoo, and dried and brushed it with her white soft-bristled baby brush, which smelled sweet and intoxicating, just like her.
My baby sister was my firstborn child and was the picture of good health and proper growth, with average amounts and frequencies of spit-up, throw-up, urination, and smiles, cooing, laughter, crawling, scooting, walking, and running.
My baby sister never had that yellow-greenish look in the eyes and skin, that pleated-up brow and squinting eyes that declared constant pain, or those cries that wailed long and hard, screaming distress.
My nannying years
Mothering my baby sister taught me the skills, attention, and art of mothering. It also gave me the knowledge and skills to become a live-in nanny in my 20s, which I did for a healthy 5-year-old girl and her newborn baby brother.
I held that lonely job for four years and nurtured that 5-year-old girl to a girl of 9 and that newborn baby to a young boy of 4. I played with them, read to them, bathed and clothed them, helped them with their homework, and later even drove their parents’ cars to take them to and from events and school.
Both my sister and the children I nannied for taught me all the skills and constant responsibilities of mothering. Now I had my own baby to care for, except the doctors had put a sick baby in my arms.
My firstborn son
For the next 18 years, I would take my son to doctor after doctor after doctor, specialist after specialist after specialist, because he was constantly ill. Bacteria attracted to my son’s body like bullets to a target. When I took him to public places or family gatherings, and others held him, 24 hours later, he would be ill with some upper respiratory infection. We would return to doctor after doctor after doctor, ER after ER after ER.
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The pediatrician, nurses, and nutritionist all found fault with me. Why was I in their office again and again and again?
“He has allergies,” they said.
“That’s normal,” they said.
“You have to breastfeed,” they said, even though my son was not thriving on breastmilk, projectile vomiting across the room when he nursed, and low on their growth percentile charts.
“Change your diet,” they said, instructing me to remove all citrus and spices. “You need to make your breast milk tolerable for his stomach.”
“He has colic,” they said. “Lots of babies have colic. It’s normal. He will outgrow it.”
“Fine. He can try the formula,” they said, noting that the markings on the growth percentile charts indicated that my son was still not growing as he should.
“He has skin allergies,” they said. “That’s why this rash on his back, abdomen, and arms keeps coming back. Use this cream and change your laundry detergent. Double rinse. Don’t wash his clothes with yours. He’ll be fine.”
“He’s constipated,” they said. “That’s why his stomach is distended and you only see pellets in his diaper. Give him diluted prune juice.”
They medicated and trivialized every complaint. When I asked why so many things were wrong and if all these symptoms indicated a bigger problem, they became even more irritated with me.
“He’ll be fine,” they said. “He’s adjusting to the outside world. We see this all the time with lots of babies.”
My son’s rounded face became lean and gaunt, his eyes sunken like dried-up pools in their bony orbits, unlike the face and eyes of my baby sister and the children I nannied. I kept watching my son’s body wither. And while he smiled at times, my son had a perpetual look of pain and sadness on his face, a look that he still talks about today as a man approaching 29. He is haunted by his baby pictures — the many I took because there was none of my babyhood and only three of my early childhood compared to the 100+ photographs of my older sister.
Adaptations and the fight for survival
For the first three years, my son did not sleep lying in his bassinet, crib, or toddler bed. Instead, most nights, I sat with him in a rocking chair, positioning his abdomen on my left shoulder blade, his head propped up on a pillow because the vertical position somehow relieved the pain that prevented him from sleeping horizontally. Whenever I put him to bed at night, a few minutes later, he would start screaming, and eventually, to let my husband and him sleep, I sat in the chair. There was nothing else I could do. I only dropped him once.
When we visited my husband’s family or were out in public, I begged people not to put his face on their clothes, kiss his face, breathe on him, or touch his hands that he would put into his mouth. I also explained how to position him almost vertically for his feedings. People resisted my instructions. What did I know as a first-time mom? They thought I was psychosomatic. Something must be wrong with me. But like clockwork, 24 to 36 hours after such visits and people’s violations of my instructions, my baby would be ill again.
And we would be back at the doctor’s where my concerns would be invalidated, just as my instructions to those who loved my baby boy and thought they had more mothering knowledge and experience than me were ignored. My son got sick at the babysitter’s with the same frequency as when we went to family and other gatherings. He was seemingly allergic to people.
Eventually, I quit my job and stayed at home to care for my sick son. I started writing everything down: lists of medications, frequencies, dosages, dates of every illness and doctor or ER visit, diagnoses, and new drugs. I made copies of the lists to preserve my voice and sanity and give accurate accounting when I went to old and new doctors and specialists alike.
I stocked and maintained three shelves with medicines in one double-doored kitchen cupboard and one shelf in the refrigerator. My husband was a chronic asthmatic, so I kept the top shelf organized with his medications. When I saw that baby medications increasingly did nothing for my son’s young body, I eventually began using my husband's medications on my son. I constantly researched to find any natural and homeopathic medicines that might help.
I began making herbal or bush teas known as therapeutic, mucus-clearing, and immune-strengthening. I also administered adult doses of specific vitamins and siete jarabes, a seven-oil mix that a friend from Puerto Rico introduced to me.
My son needed to live. He did not ask to be born but was here and deserved a chance. He deserved someone to fight, love, and sacrifice for him so that he could breathe, live, and laugh.
How my childhood trauma responses helped me save my sons
Had it not been for my childhood experiences, traumas, and how I grew into an obsessive-compulsive and codependent woman, I don’t know that I would have so easily survived the artillery fire of illness that ravaged my son’s young body and mind and mine, daily for all those years. Without my earlier experiences, I do not know that he and his brother — who came four years later with the same invisible illness intertwined with his DNA — would have endured so long on the battlefields of undiagnosed disease.
I learned to watch their upper chests rise and fall for movements others wouldn't necessarily notice. I could tell by listening if they had bronchitis or pneumonia and how quickly we needed to get to the hospital. I came to understand the language their coughs spoke, what they were saying and what they were not, what medications to administer, in what doses, and how frequently, how many chest and back percussions to administer and how often, and when — again — another doctor’s office or ER visit was necessary.
Eventually, when I took them to the ER, I would say, “I think he has pneumonia in the right (or left) lung (It varied) and is oxygenating at about 75 percent.”
ER doctors would ask, “Are you a medical doctor?”
“No,” I’d reply. “I’m the mom.”
Hours, scans, and big bills later, they would place a picture on a lit screen and say, “He has pneumonia in the right lung. See the white areas. He’s oxygenating at 74% percent. We need to do some other tests. Let’s give him another round of albuterol to begin…”
The losses of invisible illness
As my sons got older, so began the days and cries of having no friends, being sick, not being able to play, go to parties, and eat the same foods, and being excluded from so many opportunities they saw their classmates experiencing.
My sons even lost their Daddy, who was physically present at first but then resented how much time caring for them took and retreated to church, music-making, alcohol, and other addictions, and being out of the home more than in. In therapy, he confessed he was jealous of the time that I spent with the boys — our boys — because I neglected him. Later, through separation and divorce, their Daddy disappeared even more. He made promises to them but rarely showed.
Many years later, when they were finally diagnosed with Cystic Fibrosis, their Daddy disappeared still more. As he explained three years later, "I went into a state of grief and could not do anything for them. But I'm here now.” But years of fighting a now-named life-shortening illness just as they were entering adulthood, with only one parent to guide and support them, was not enough to reconstruct the gaping, gushing gorges of loss in their minds, hearts, and spirits.
The diagnoses
On April 27, 2014, my younger son, aged 14, was finally diagnosed with Cystic Fibrosis (CF), and 32 days later, my older son, then 18, received the same diagnosis. Cystic Fibrosis (CF) is a progressive, genetic disease that affects the lungs, pancreas, and other organs.
For decades, few medical practitioners looked at babies of color like my brown-skinned ones, who presented all the signs and symptoms of CF and sent them for testing. Being brown meant a greater chance of later diagnosis. Also, many of the existing tests for the 1800+ mutations that cause cystic fibrosis did not cover mutations typically found in the bodies of brown-skinned babies.
The invisibility of my sons’ illnesses lay under the dark covers of their shaded skin.
While no child should have to suffer trauma at home and from their parents, I found gratitude for mine and the coping responses I developed to them. My traumas shaped me to be a doer, worker, giver, and savior — without complaint — and that is what my sons needed of me.
Each day that my sons are here, I'm grateful for the miracles of life, for enduring and overcoming, and for all the care teams, advances in medical care, and steps made towards a cure by all the other doers, workers, givers, and saviors in medicine, research, and at the Cystic Fibrosis Foundation (CFF).
Michelle Ann Patrovani, Ed.D., is a writer, educator, former school leader, and mom to two phenomenal young men with Cystic Fibrosis (CF), whom she considers her greatest gifts and teachers in life. Her articles have been featured in the NYAPE Journal, Cystic Fibrosis Foundation Blog, LinkedIn, and various Medium publications, including Invisible Illness and Thirty Over Fifty.