The Long Arms of Childhood Illness

Affordable care act calculator

If you saw my two daughters today, you would never know that some medical insurance companies would historically have considered them uninsurable.

My youngest daughter’s history of illness has been documented in my blog and detailed in articles in a variety of publications. From infant reflux to laryngomalacia to a congenital heart defect, from eosinophilic esophagitis to chylothorax, she has been under general anesthesia 17 times in her eleven years. Though the first nine were full of medical intervention, the last two following her final surgery have been nothing short of miraculous for her. She now eats well, has full energy, is growing, and leads a completely normal life. She has a pediatrician, a dentist, and an orthodontist — a far cry from the pit crew of specialists she used to see.

Even so, without the Affordable Care Act, she could be denied health insurance for the rest of her life. Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Bike Back

bikeIn 1989, when I was fifteen years old, I had a terrible bike accident. Following my friend and her father through a wide intersection in the final moments of our yellow light, I rode my bike directly into a car that began moving forward just as our light turned red. As I saw that the driver was speeding up and that I would almost certainly collide with her, I did what many people do, instinctively, when they’re frightened: I closed my eyes.

The last thing I remember from that crash was seeing that my front bike tire was about to hit the side of the moving car. The events that followed were a series of flashes: seeing my bike twenty feet away from where I lay on the street, the EMT’s face above me; answering the question of who our president was as the ambulance sped toward the hospital; my mother’s face in the emergency room. I had a concussion, stitches on my scalp, and a compression fracture in one of my vertebrae. The friend who had been behind me on the bike ride said she watched me collide with the car and fly high into the air, landing heavily on my back and the back of my head. It was the 80s; no one wore bike helmets.

I often think of this as I ride my current bicycle around town. I recall the crash from my childhood and even remember the aftermath in the hospital. My back still twinges from time to time, and hair never grew in again over the spot where I had stitches. Still, I love to ride my bike. I love the way a hot day turns cooler with the wind I create on two wheels. I love the freedom of choosing alleys instead of roads, of avoiding traffic, of parking anywhere I can safely lock my bike. I love my bright blue bicycle itself, and the quirky helmet that all my friends can identify from afar. I love the inner child who tugs at my shirt when I get on, proud to keep herself balanced on the pedals and thrilled to be moving faster than on foot but still using only the power of her own two legs.

In short, that bike accident — violent, frightening, memorable — has not ruined my love of bicycling. So, how can we know, as parents, which experiences will wreak havoc on a child’s future interactions and which will be unable to change what is fundamental? Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Actual, Real, Helpful Help

Swallow, My Sunshine: Bridge

A family in crisis, if they live in an active community of family or friends or both, will find themselves fielding regular offers of help. This is so many orders of magnitude better than the alternative of living in isolation, surrounded only by one’s own panic, but offers of help are not nearly as good as actual help, delivered while requiring as little as possible from the people who need it.

Article after article have been written about “ring theory,” the idea that, using a map of concentric layers around a person or family in crisis, support and comfort go in and complaints and requests go out. At the center of the circle is the person with the core issue; in the example of a family with a sick child, the child is at the center. While a parent might find their child’s howls of pain excruciating to hear, she would never dream of complaining about them to the child himself; more appropriate would be to complain to a good friend.

from story at http://www.latimes.com/nation/la-oe-0407-silk-ring-theory-20130407-story.html#axzz2kF8iBw9U

Illustration by Wes Bausmith / Los Angeles Times

This is common sense, but sometimes, the farther out from the center, the harder it is to remember.

Everyone knows not to complain to the parents of a sick child about how much work it is to support them and their child during this crisis, even though it is indeed HARD to be involved in a crisis, however little it really touches your own life. Being around fear and anxiety is, itself, traumatic. Still, we know, as ring theory tells us, to “dump out.” It becomes trickier when it’s not so much “dumping” our complaints as it is “dumping” the hard work of finding out what our struggling friends really need. Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

Hearts Break for Years

Swallow, My Sunshine: The Short Family Tragedy

I have anxiety and nightmares. Certain smells and hallways trigger memories every single time. Yet sometimes the memories return out of nowhere like a beeping sound from someone’s phone reminding you of the monitor alarms. None of this ever got easier…

Those words were written this spring by Megan Short, the mother of a two year old daughter Willow who received a heart transplant as a newborn. In a special post on the Mended Little Hearts of Philadelphia web site, she shares feelings any parent whose child experienced medical trauma can understand: fear and overwhelm, and the sense that her life would never be the same. Any parent who has sent a child — particularly a baby — into the operating room for major surgery can identify with the memories she shares.

What, thankfully, seldom happens to those parents and their families is what happened to the Short family last weekend. In a horrific turn of events that may never been totally understood or unravelled, the entire Short family was found dead in their home, a murder-suicide that took the lives of the parents and their three children, including two-year-old Willow, her transplanted heart lost to a family’s untreated emotional trauma. Continue Reading…

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather

My Bruised Birthday Heart

My daughter Sammi turns eleven tomorrow, and when I wake up, I will immediately start down the same well-trod path of many mothers: I will relive the day of her birth.

debibirthMy realization of this tradition began with my own mother retelling the story of my entry into the world, something she did with diminishing success over the years. As a child, I remember her tale of the planned induction beginning with the Chinese meal she ate the night before. She always smiled and rolled her eyes in mock-overwhelm as she described the obstetrician who lived across the street from the hospital and who padded back and forth all night to check on her as she labored, wearing his bathrobe. She always laughed when she remembered the paperboy poking his head in the door to sell her a paper a few hours after I was born, only to do a double-take at her feet still up in stirrups as the nurse tended to her underside. As the years have gone on, my mother muses over all these details less and less. After more than forty years of remembering, there are now some pieces of the story that I remember better than she does, just from the repetition.

My oldest child — my daughter Ronni — came into the world memorably, and I begin the memories of her birth more than a day before her birthday. I can recount it by the hours, still, fourteen years later. Although much was painful, and much was frightening, I recall the event with joy and celebration. I labored, I pushed, I struggled, and eventually I felt the indescribable sensation of my child passing through the space between my hip bones, my pelvis, and into the world. The beauty of it brings tears to my eyes, still. I can access those emotions easily, quickly, and feel washed in love and wholeness, knowing as I do now that it was the beginning of a relationship marked by tenderness and discovery.

Sammi’s birth is so much harder to retell.

Sammi 2 days

She was born a week late by emergency c-section, inexplicably tiny and riddled with health issues. For years after that day, there was seldom a break from worrying about her, seldom a moment when my body wasn’t called on to continue carrying her somehow — to nurse her, hold her, rock her, drive her to the hospital, drive her to doctors’ offices, administer medicine, hold a breathing mask over her face in the middle of the night, pull underwear up her legs under a hospital gown. I was constantly peering at her ears, her mouth, her nose, checking to see if her ribs were protruding more than last week, literally and figuratively weighing her. I fed her with the intensity of a brand new mother, always.

In many ways, Sammi’s birth — and my labor — went on for nine years. It started on the day of her birth and stopped one beautiful day in October of 2014 when her good health shone clearly and she was, for me, finally born. Just like other labors, in those nine years were moments of pain I didn’t think I was really able to bear and moments of rest when I gathered strength for the surges that were coming. Just like other labors, sometimes I begged anyone nearby for help and sometimes I silently clenched my jaw and squeezed the hand of my husband alone. Just like other labors, I was often selfish and believed the struggle was mine alone, and there were other times when I remembered that Sammi was trying just as hard as she could and that my husband was watching both of us, helpless to do more than offer comfort.

And just like other labors, it finally ended.

Remembering the day she was born is hard. It was the beginning of an uphill climb, and when you climb a mountain, you celebrate the summit with far more joy than you recall the moment you took the first step. There is too much journey in the middle. Still, I know that the day Sammi came into this world is important. It did not have the funny cast of characters my mother remembers from my birth, and it did not include the stirring, empowering moment of my older daughter’s birth, but it was the first hard leg of a journey that we both weathered in the end. What it lacks in positive imagery, I suppose it makes up for in the stuff of character-building.

I love Sammi with a fierceness I cannot describe, with a quality different — though not more or less — than what accompanies my love for Ronni. Sammi and I were in labor together for years. She may grow to forget as much of it as my mother now forgets about my birth, but I will never forget how our bodies were linked, how we strained, and how when it was done, there we were: born.

born

Happy birthday, Sammi. I’m achingly grateful that you are here.

Facebooktwittergoogle_plusredditpinteresttumblrmailby feather
twitterby feather