Skip to content
Catholic Online Logo

By Tara K. E. Brelinsky

3/27/2014 (1 year ago)

Blessings In Brelinsky (brelinskyville.blogspot.com/)

Words like burden, trouble, or unwanted never entered our conversations.

As though it were yesterday, I recall the upset in their voices on the day they discussed the doctor's recommendation for a feeding tube. Considering the infrequency with which doctors actually bothered to speak directly to family members, I assume the news was delivered via the shift nurse. The tube was being ordered to better facilitate her nutritional needs. On a floor full of kids dependent on breathing tubes, drainage tubes and electronic monitors, a feeding tube was the next logical step. But to Misty's family, that step was leading in the wrong direction.

Highlights

By Tara K. E. Brelinsky

Blessings In Brelinsky (brelinskyville.blogspot.com/)

3/27/2014 (1 year ago)

Published in Health

Keywords: Brelinsky, special needs, Misty, dignity of life, preferential love, preferential option, mercy, domestic church


ZEBULON,NC (Catholic Online) - Her name was Misty. It was printed in chalk on the nurses' station board along with a list of other first names. We would never actually meet, but I caught a glimpse of her one day as I walked passed her room. The mental picture I'd developed before that sighting was of course all wrong.

Just days into our month long stay in the Pediatric Intensive Care Unit, we met Misty's family: aunts,  an uncle, a grandmother, father and cousins. Now, almost nineteen years later, I've lost count, but there were enough of them to fill the room around us. Doubtful our paths would have ever crossed if not for the circumstances that forced us all into that tiny waiting room.

Naive, overwhelmed newbies we were, but Misty's family were well-seasoned veterans in this system of corridors, white coats and ever-changing prognoses. They took to us and us to them in a fast friendship that felt like it would last a lifetime.

In bit and pieces, through conversations and encounters over the next weeks, Misty's life story unfolded. Born to young, unwed parents, her mother died sometime before the baby would finish toddlerhood. Knowing she would never see her daughter grow up, Misty's mother had one dying wish; she made her sister swear to raise the child as her own. That little sister bore that promise with unswerving faithfulness and along with the rest of the extended family she committed the next fourteen years to caring for her sister's only offspring.

Sometime after losing the mother, it became apparent that Misty suffered from serious medical conditions which were the result of an under-developed brain. Her life would include many PICU stays and she would never know the freedom of spinning to "Ring Around the Rosie" or the joy of singing her ABCs. By the time we met her family, she was relegated to a bed, unable to speak or provide her own basic needs.

Surely some outsiders questioned her "quality of life". To a culture that equates physical fitness and mental capacity with the measure of a person's worth, Misty might have appeared a hopeless case.

Her family knew her better.

She loved it when her aunts and grandma fed her, they proudly boasted. At mealtimes, she rewarded them with smiles and eyes that spoke the words her mouth could not. And though the doctors and nurses insisted she was forever silent, Misty cooed for those who loved her. Rather than flowers and teddy bears, family members shopped for new, lace-trimmed nightgowns to make her not infrequent hospital trips more pleasant. Every day it was someone's job to brush out her long, flowing hair and wash her pretty face. True to her promise, Misty's aunt insured that someone always remained nearby.

Words like burden, trouble, or unwanted never entered our conversations.

As though it were yesterday, I recall the upset in their voices on the day they discussed the doctor's recommendation for a feeding tube. Considering the infrequency with which doctors actually bothered to speak directly to family members, I assume the news was delivered via the shift nurse. The tube was being ordered to better facilitate her nutritional needs. On a floor full of kids dependent on breathing tubes, drainage tubes and electronic monitors, a feeding tube was the next logical step. But to Misty's family, that step was leading in the wrong direction.

To the doctor, who probably spent five minutes reading her chart, this fourteen year old was a case study in medical interventions. To the busy nurse, Misty was another terminal patient with machines to monitor, levels to record and notes to take. The act of feeding her was just another necessary procedure to follow, but to her aunts and grandmother meals were so much more.

At the time I thought I understood their desire to retain this autonomy for Misty, the ability to taste flavors and feel textures across her tongue. But now that I've experienced the excitement of spooning first bites into my own little ones' open mouths, I can relate all the more to their desperate attempts to protect her mealtimes. Three times a day, Misty's family had the privilege to lovingly nourish her with food and she had the opportunity to feed their hopes and dreams. With my own not-yet-verbal children, I have to watch for their bodily cues to tell me if the food I offer is pleasing to their palate and when they've reached their fill. Feeding a child means moving in close, making eye contact  and connecting (physically and mentally).

A feeding tube meant more than simply relinquishing a chore, it meant stripping Misty of one more "normal" function. When you expect your child to grow-up, to advance through life's milestones, it's easy to take such little tasks for granted, but Misty's family didn't have that luxury.

On that day, walking passed her room, I peered in expecting to see the girl my mind had formed. Instead, the young girl of about fourteen appeared so tiny and fragile in her hospital bed. Her legs barely reaching beyond the midway point, she was no longer than a child of five or six. And that long hair flowed nearly the full length of her stunted body it seemed. I was startled by the reality.

The image I'd created was based on my idea of "normal" because that's how Misty's family portrayed her. The obvious love they had for her communicated a different picture, while my eyes sized her with a worldly measure. No one ever knew my surprise and for that I am glad because I am ashamed of it. My false vision betrayed my ignorance and bias.

Those few weeks, nearly two decades ago, changed my life. I lost touched with her family, so I never did learn whether or not they managed to protect her from the feeding tube directive, but I've never taken for granted the real importance of "feeding" my children.

Misty was truly everything that her family saw her to be. Beautiful. Worthy. Special. Perfect. And in my mind, she will forever remain larger than life not because of her stature, but because she personified Christ (the hungry Christ, the naked Christ, the imprisoned Christ) to those who took the time to see.

-----
Tara K. E. Brelinsky is a home schooling mother of eight living children, with six more heavenly ones who intercede. Married to her childhood sweetheart, they make their home in North Carolina where they teach Natural Family Planning, grow a garden, raise two dogs, a cat, ducks, roosters and a flock of hens (in addition to all those wonderful kids). Tara studied journalism a lifetime ago in college, but now she writes simply for the the glory of God. You can read more of her musings and inspirations on her blog "Blessings In Brelinskyville" (www.http://brelinskyville.blogspot.com/).

---

personal blog



Comments


More Health

The Universal Flu Vaccine: Researchers are closer to a solution that attacks a different part of the virus Watch

Image of Human immune response to influenza is directed against a protein on the virus called hemagglutinin, and a portion of the protein called the hemagglutinin head, where the majority of the mutations occur.

By Catholic Online (NEWS CONSORTIUM)

It's a universal misery that comes whenever the weather cools or it starts to rain. Influenza begins to settle in to a large part of the population, leading to school and job absences. Researchers now say hat attacking a largely hidden part of the influenza ... continue reading


Grandmother miraculously beats eight different cancers in a row Watch

Image of

By Atarah Haely (NEWS CONSORTIUM)

Many people lose hope while battling cancer and experience even more trauma when they fight the same disease again and again. Despite the constant evolution of technology, there are still risks of developing different forms of cancer at any time. However, one ... continue reading


Hepatitis C finally given approval in United Kingdom after 'inexcusable wait' Watch

Image of Sufferer Pamela Anderson claims she got Hepatitis C from her ex-husband Tommy Lee after they shared tattoo needles.

By Catholic Online (NEWS CONSORTIUM)

It comes as wonderful news for untold thousands of Hepatitis C sufferers, albeit one that came after an "Inexcusable wait." The once-a-day drug sofosbuvir has a 90 percent success rate by patients - and will be available free of charge for patients in the ... continue reading


First human brain grown in laboratory dubbed success, despite scientific doubt Watch

Image of

By Talia Ramos (NEWS CONSORTIUM)

For the first time in the history of science, an almost full-grown human brain was successfully grown outside the body and in a laboratory by a team of researchers. According to The Guardian, the brain is a size comparable to that of a 5-week-old fetus. The brain will ... continue reading


Modern Paleo diet may not be so Paleolithic Watch

Image of

By Atarah Haely (NEWS CONSORTIUM)

Carbohydrates, largely overlooked in the modern Paleo diet, were actually a part of the food group consumed by our hunting-and-gathering forefathers, according to a new study published earlier this month. Although the diet works effectively on some trying to lose ... continue reading


Is coffee really good for you? New research finds coffee may reduce risk of some cancers Watch

Image of

By Hannah Marfil (NEWS CONSORTIUM)

Caffeinated coffee drinkers are at a lower risk of having bowel cancer, as well as dying from the disease and other types, according to recent data. Those who drink four to five mugs of coffee a day were found to cut, by almost a half, the odds of bowel cancer ... continue reading


'Brainy' mice research may lead to effective treatment for Alzheimer's Watch

Image of

By Atarah Haely (NEWS CONSORTIUM)

Genetically altered mice tend to be more intelligent and exhibit less anxiety, according to new research. The discovery is speculated to be a part of a more comprehensive study regarding treatment to diseases like Alzheimer's post-traumatic stress disorder (PTSD) and ... continue reading


Study finds intelligence related to a longer lifespan Watch

Image of

By Talia Ramos (NEWS CONSORTIUM)

A longer lifespan is related to intelligence contributed by the genetic makeup, according to new research. Analyzing three twin studies, a research team found that the link between intelligence and a person's life expectancy is about 95 percent because of genetics, ... continue reading


Human Head Transplant: Science fiction or a reality? Watch

Image of

By Nikky Andres (NEWS CONSORTIUM)

Over the years, science fiction has sparked the idea of real life transplant surgeries. The once fantasy of a brain transplant may soon become a reality. MUNTINLUPA, PHILIPPINES (Catholic Online) - When Sergio Canavero, an Italian neurosurgeon, first publicized his ... continue reading


Four-year-old boy with 'butterfly skin' disease lives every day in pain Watch

Image of [Photo by: PA Real Life/Heather Curtis]

By Nikky Andres (NEWS CONSORTIUM)

Somewhere in Charlestown, Indiana lives a young boy whose daily life is filled with agony and pain. Four-year-old Brody Curtis suffers from epidermolysis bullosa (EB), also known as "butterfly disease." The boy's body is full of deep open wounds and has to take several ... continue reading


All Health News

Newsletters

Newsletter Sign Up icon

Stay up to date with the latest news, information, and special offers

Daily Readings

Reading 1, First Thessalonians 4:1-8
1 Finally, brothers, we urge you and appeal to you in ... Read More

Psalm, Psalms 97:1, 2, 5-6, 10, 11-12
1 Yahweh is king! Let earth rejoice, the many isles ... Read More

Gospel, Matthew 25:1-13
1 'Then the kingdom of Heaven will be like this: Ten ... Read More

Saint of the Day

Saint of the Day for August 28th, 2015 Image

St. Augustine of Hippo
August 28: St. Augustine of Hippo is the patron of brewers because of his ... Read More

Inform, Inspire & Ignite Logo

Find Catholic Online on Facebook and get updates right in your live feed.

Become a fan of Catholic Online on Facebook


Follow Catholic Online on Twitter and get News and Product updates.

Follow us on Twitter