Skip to content
Catholic Online Logo

By Tara K. E. Brelinsky

3/27/2014 (4 months 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 (4 months 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

COUNTDOWN TO GLOBAL INFECTION: Hunt is on for 30,000 Ebola carriers worldwide Watch

Image of The father of three, Patrick Sawyer became the first American to die from the Ebola virus.

By Catholic Online (NEWS CONSORTIUM)

With the death of 40-year-old Patrick Sawyer, an American who contracted Ebola while caring for his sister with the virus, the hunt is on for people who may have been in contact. Officials hope to head of the deadly virus off at the pass - before it is too late. ... continue reading


THERE IS HOPE: Drug-resistant malaria has not yet spread to parts of Africa Watch

Image of While there have been significant reductions in the numbers falling ill and dying from the mosquito-borne disease, malaria still claims the lives of more than 600,000 people annually.

By Catholic Online (NEWS CONSORTIUM)

As the western part of the African continent struggles with the spread of the horrifying Ebola virus, there is hope on the health front - albeit one that must be taken advantage of in the time allotted. Drug-resistant malaria has proved to be a serious threat ... continue reading


Ebola coming to America? American death from Ebola hammers home worldwide threat posed by disease Watch

Image of Patrick Sawyer has become the first American to die from the deadly Ebola virus.

By Catholic Online (NEWS CONSORTIUM)

American Patrick Sawyer, who worked as a top government official in the Liberian Ministry of Finance, had been caring for his Ebola-stricken sister in Liberia. Returning home, he collapsed and died, the first known American to have perished from the deadly ... continue reading


A LOT OF TEETH! Doctors remove 232 teeth from mouth of teenager Watch

Image of Medicos have described the teenager's condition as

By Catholic Online (NEWS CONSORTIUM)

We've all had to suffer for several hours in a dental chair, but chances are that our worst experiences were nothing like that of an Indian teenager who had 232 teeth removed during a seven-hour operation. Now done to 28 teeth, the youth has a better chance for ... continue reading


SURPRISE! Study finds that obese kids in the U.S. see themselves as being skinny! Watch

Image of Curiously, researchers found that some obese children even believed that they were underweight.

By Catholic Online (NEWS CONSORTIUM)

Should it come as a surprise - or just another sad comment on the prevalence of obesity in the United States? A new study has found that children who are overweight or obese don't see themselves as being so. Researchers and medical experts says this needs to ... continue reading


NEW FEARS: Middle Eastern Respiratory Syndrome may be transmitted through air Watch

Image of In their research, scientists from King Fahd Medical Research Center in Saudi Arabia collected three air samples from a camel barn.

By Catholic Online (NEWS CONSORTIUM)

There are new fears that the rapidly spreading virus, Middle Eastern respiratory The Middle East Respiratory Syndrome Coronavirus, or MERS, may be an airborne virus - making the disease highly easy to transmit, and get. LOS ANGELES, CA (Catholic Online) - To ... continue reading


Light at end of tunnel? HIV epidemic could be contained by 2030 Watch

Image of While HIV, the virus that causes AIDS, continues to be an ongoing threat - more so in developing nations where education about its transmission is compromised, there now appears to be a light at the end of the tunnel.

By Catholic Online (NEWS CONSORTIUM)

While HIV, the virus that causes AIDS, continues to be an ongoing threat - more so in developing nations where education about its transmission is compromised, there now appears to be a light at the end of the tunnel. According to the United Nations, new HIV ... continue reading


Dye now being used to detect dementia Watch

Image of Researchers from Duke University Medical Center in North Carolina, tested 152 patients older than 50 years of age to see if they could predict cognitive decline by tracking changes in the brain.

By Catholic Online (NEWS CONSORTIUM)

Dementia, like Alzheimer's is a disease that usually effects the elderly. In the manner of Alzheimer's plaque begins to collect in the brain at an advanced age. This drastically effects the patient's memory, cognitive ability and motor skills, with many winding ... continue reading


Breakthrough announced in hereditary condition that causes blindness Watch

Image of The age at which symptoms start is variable and the rate of deterioration often varies. In around half of all cases there are other family members with the condition.

By Catholic Online (NEWS CONSORTIUM)

Retinitis pigmentosa, or RP is an inherited, degenerative eye disease that causes severe vision impairment and frequently leads to blindness. Affecting around one in 3,000 to 4,000 people, scientists have moved closer to a breakthrough in "personalized" ... continue reading


Deadly plague than can be spread by coughing, sneezing infects Colorado man Watch

Image of Untreated plague is always fatal. Antibiotics have to be given within 24 hours of the first symptoms to reduce the chance of death.

By Catholic Online (NEWS CONSORTIUM)

It's the first case of pneumonic plague seen in Colorado since 2004. A man there has been diagnosed with among the rarest and most fatal forms of the plague, an airborne version that can be spread through coughing and sneezing. LOS ANGELES, CA (Catholic Online) ... 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, Jeremiah 26:1-9
1 At the beginning of the reign of Jehoiakim son of ... Read More

Psalm, Psalms 69:6, 8-10, 14
6 Those who hope in you must not be made fools of, ... Read More

Gospel, Matthew 13:54-58
54 and, coming to his home town, he taught the people ... Read More

Saint of the Day

Saint of the Day for August 1st, 2014 Image

St. Alphonsus Marie Liguori
August 1: Bishop, Doctor of the Church, and the founder of the ... 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