The Boy in the Next Bed

ricardo

When my daughter Sammi was just over a year old, she had surgery to repair a congenital heart defect. After the worst of it was over and she was nearly — but not quite — ready to go home, they moved us from the ICU to the general ward of the children’s hospital.

In the ICU, each child has her own tiny room — about twice as wide as a twin bed — with a glass partition at the end of it. On the other side of that partition sits the child’s personal nurse, up on a stool next to a computer that monitors a host of vital signs and other measurements. That nurse has no other patients. When shifts change, two nurses fill that tiny space for thirty minutes, conferring and learning so that the new nurse has all the information necessary to sit vigil for the next shift.

In the general wards, the supervision is quite different. So are the rooms. When we got to the door, I went in and dropped all our stuff unceremoniously on the nearest chair, then stopped in my tracks.

“There’s someone already in this room,” I whispered to the nurse, pointing at the curtain and then at the loud tv tuned to cartoons. Continue Reading…

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Figure This Out, Everyone

affordable care actThe results of the U.S. presidential election are not what I had been hoping they would be.

Although many issues were important to me — and my opinions were represented well across several candidates — one that made me especially motivated was the Affordable Care Act. Between my two daughters and I, we have a host of ailments — historical and current — which would have qualified, before the ACA, as “pre-existing conditions.” I have one daughter who was born with a congenital heart defect that affected her respiratory and digestive health. I have another daughter with a kidney/ureter condition. I have asthma and a severe food allergy. The ACA included within it a protection that kept insurance companies from denying health care because of a pre-existing condition, but President-Elect Donald J. Trump has been quite public about his disdain for the Affordable Care Act, also known as Obamacare. Just last week, he was quoted as saying that Obamacare was a “horror” he would “repeal and replace.”

If we are to take him at his word, our next task is to pray — prayer through hoping, emailing, calling, writing, and traditional wailing prayer — that this most important protection made available through the Affordable Care Act remains in effect in whatever health plan replaces it. Even terrible health insurance is better than no health insurance, a reality many who never had insurance until now understand all too well.

I haven’t slept much. Forgive my lack of eloquence: this scares me.  Continue Reading…

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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…

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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…

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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…

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