Category Archives: PICU

Misty, The Girl I Never Met: Never Judge a Book by Its Cover or a Person by Their Abilities

special needs children need special love
Gabriel Max (Artist)

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-changingprognoses. They took to us and us to them in a fast friendship that felt like it would last a lifetime.

In bits 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 touch 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.

The Hard Work of Healing, Dancing With Grief

dancing with grief

Having just spent some part of the night curled up on the hard waiting room floor, I awoke and made my way down the long corridor of our temporary lodging, the Pediatric Intensive Care Unit. His room was on the right at the end of the hall, his bed the first one to the left. Freshly scrubbed in, I eagerly greeted my sweet firstborn, who was lying still and quiet in his sterile, warming bed.

It’s a curious mechanism our brain has to shield us from trauma. Perhaps, we could call it hopeful vision, the way we can miss the signs of impeding sorrow. We’d been on the roller coaster of good days and bad nights for weeks, but my hopeful eyes saw a future beyond the web of wires and tubes.
Things aren’t looking so good,” the day nurse said gravely. Swelling and fluid, more drainage tubes and another procedure are words I can recall from that early morning conversation. Dazed and confused, I made my way back down the stretch of corridor to the pay phone in order to tell my husband he must hurry back. He’d only just returned at work, but there was no time to spare.
Some time later, once again relegated to that stiff, cold waiting room, my husband and I sat side by side staring into the thin air. That’s when he walked in and took up the seat beside us. I’m not sure if the room had been empty of others before his arrival or if our fellow parents had silently vacated upon his arrival, but when the chaplain took his seat we were his only companions.
Only a week or so earlier, another family sat alone in that waiting room. Holed up in that room of tears, they received the news that their beloved daughter had lost her battle against sickle cell disease. The chaplain requested that we give them the space and time they needed, so the rest of us parents lingered in the hallways or made our way to the second, less popular waiting room around the corner.
Now I realized in that moment with the chaplain seated beside us, it was our turn. I held my breath in dreaded anticipation.
The chaplain, with compassion in his eyes and tenderness in his voice, called our attention to the flurry of doctors and staff who’d rushed down that endless corridor. He didn’t have definitive facts, but he’d taken note of their concerned expressions and the larger than normal number of white coats crowded into that room on the right.
  • Eyes Wide Open

In the hours to follow, the blinders peeled back and we would see our son’s bloated form lying with an ever increasing limpness. Curtains drawn around us, the other patient in that shared hospital room seemed to disappear. I’d grown accustomed to the silence of sickness, but in those torturous hours I begged for some confirmation of the transition between life and death. I had only the machines to provide me clues.

Then, numbers declining, I lifted up my child along with the twist of leads and tubes and pressed him close to my body, where only a short month before he had resided. His daddy, standing behind me, encircled the two of us in his strong arms. Our trinity held fast until the last breath of life escaped our baby’s lips and his heart took its final rest.
On that day my first extensive journey into grieving began. Elisabeth Kübler-Rosslaid out the steps to the dance I was about to undertake. Denial, anger, bargaining and depression spun me around like a ballet dancer practicing herpirouette.
  • Step #1 Mastered

I can remember the exact location and approximate time of day when I first accepted that my son had died and he wasn’t going to be miraculously resurrected in my lifetime. A few months had gone by since we’d handed his lifeless body to the hospital chaplain that August evening and I was driving on the highway home from work. Like a wave that overwhelms, pushing you down under its watery power, I was suddenly and violently awash with the reality that he was gone, really gone. Peculiar sounding I suppose to the non-grieving parent, but I’d secretly believed until that exact minute that my son would be returned to my aching arms somehow. Now the well practiced step of denial mastered in that moment, my concentration was directed to the remaining emotional hurdles.
By the grace of God (quite literally), I discovered The Compassionate Friends (TCF), a national support group of bereaved parents. At the first meeting, during the circle time when they’d go around and share their stories, I developed a lump in my throat the size of a lemon and couldn’t utter a single word. While unable to pour out our history on that first evening, I began to learn the motions required to participate in the day to day masquerade of living (how to fake a smile, how to pretend your heart isn’t broken in two).
A couple of sessions later, a beautiful, mature woman named Marie taught me a life lesson that I will never forget. Marie lost her son, Sidney, while she was a young mother. The doctor, in his archaic, old-school thinking, had advised her to “go home and have another baby.” Seeing no other way, she followed his callous prescription. Through the course of years her family grew until one day Marie found herself a blessed grandmother. But then her grown daughter lost a son to sudden infant death syndrome (SIDS) and that dance partner grief emerged from his perch on the sidelines to spin this grandmother/mother hard and fast. You see, Marie explained, grieving is difficult work, but work that must be done in order for healing to be accomplished. Having cast aside her early anguish did not negate its affect on her life. It served only to postpone the inevitable task of swaying back and forth to the rhythm of mourning. Now her sadness was multiplied by two.
It took several years to trudge through the quagmire of my dolor. But I followed the path even though it knocked me down hard at times. Like the novice dancer, just as I would gain my footing memories (made and unmade) rushed in to topple me. I would remember a word of encouragement spoken that never came to fruition or revisit the feel of his tiny grip on my finger. There was the first Christmas he’d never get to celebrate and the Easter basket he’d never fill.
  • Oh, Just Get a Grip

This is the period when some of us choose to “get a grip” and push our emotional steps aside. Many times acquaintances on the outside encourage us to forget the hard work and “move on.” I received that advice after the six month marker when, to those on the outside, my allotted period of sadness needed to end. However, Marie’s advice freed me to embrace my dance partner grief and allow myself to be led along a time line with no predetermined limits.

Unlike that day of reckoning on my drive home from work, I can’t pinpoint the time or place when I finally mastered all the poses. But the day did come when I stood tall and straight and crossed over the threshold to acceptance. Of course, an occasional tear still escapes some years on my son’s birthday, but it is a healthy tear, one that marks a moment of remembrance and not regret.
Watching an episode of a reality weight loss show, I was intrigued by the story of an overweight couple. Having lost a child years before, they swallowed their emotions (in thought and action). Like Marie, they had to discover that grief lies in wait.
I sometimes ponder whether in times passed, when death wasn’t such a foreigner in our lives, if people had a healthier perspective with regards to dying. Children more often didn’t grow into adults and old age came sooner. Sickness was treated in the home and the dead weren’t visited in a funeral home, but in the family’s parlor. The living had to care for their own through every step and generations shared the experience. We were forced through necessity to do the hard work. Distractions and escape were more elusive so that mourners had to visit and revisit the places and markers of our losses.
  • Grief Doesn’t Look the Same for Everyone

Grieving can come in so many forms not just from the loss of a loved one. Couples mourn the loss of children they aren’t able to conceive. A man grieves the loss of his ability to provide an income for his family. A woman weeps over the loss of her breast to cancer. A child cries over an absent father. An old woman agonizes over the loss of her memory.
In this fast paced age of anti-depressants and unrealistic ideas of the ways and means to true happiness, it is no surprise that people are suffering in silence. They are eating, swallowing, smoking and injecting their pain away. We’ve been sold on an idea of what life is meant to look and feel like, pretty and easy. So when real life occurs we are broadsided and unfamiliar with the hard work of healing. But if we break out of that misshapen mold and allow ourselves to suffer the cross, to bear its full weight for awhile, then we can be assured of hope, sincere hope, for our future.
For just as Rachel wept inconsolably for her children who were no more, so too we should allow ourselves to sob bitterly for our required time. And then, like Rachel, God will turn our mourning into joy and we will find ourselves healed and able to dance in merriment again.

Then young women shall make merry and dance,
young men and old as well. I will turn their mourning into joy,
I will show them compassion and have them rejoice after their sorrows.
Jer. 31:13