February 9, 2017

Nevertheless, We Persisted

February is American Heart Month. My social media feed is currently split between political postings and photographs of babies and children with scars I recognize all too well — across the shoulder blade in back or right down the middle in front. Parents and grandparents I’ve met online through our shared journey are posting information about their children’s experiences, their families’ grief or triumph, and ways that their communities can contribute toward better outcomes for anyone born with a congenital heart defect, like my vibrant, finally-healthy daughter Sammi.

These images are unrelenting. They drag me back, every time, away from the image of the grinning, singing girl I kissed goodbye this morning and closer to the sick baby covered in wires and tubes. I negotiate the difference in leaps, then think back on what to say to the parents still in the thick of it. How will they make it to my present-day?

Of course, the other half of my social media feeds are the political posts — assaults on freedom and confusing conflicts everywhere I turn. Truth is under attack there just as it was when I fought for Sammi’s care. Out of the mess tangling over and over itself in the news, however, came a surprise rallying cry intended to shut down a woman’s resolute message. To anyone who has followed US politics, the censure of Senator Elizabeth Warren by Senator Mitch McConnell is likely memorized by now, but for emphasis and clarity, it’s worth repeating:

“She was warned. She was given an explanation. Nevertheless, she persisted.”

It’s easy to turn this into a rallying cry for women, in general. So often, this is our only path to success, whether we’re discussing the fight for suffrage, land ownership, birth control, or just a seat at the board room table. What many women don’t know, however, is that infuriating as those indignities are, when what is at stake is our children’s lives, persisting is not a choice. It is an instinct. Continue Reading…

February 2, 2017

When Being Right Doesn’t Matter, or Does

Something was wrong with my baby daughter.

I said it to her pediatrician when she was just a few weeks old. He laughed at me, told me she was fine.

I said it in the emergency room when her chest and throat were retracting with her rapid breath. They gave her meds, watched her for a few days, sent her home with me.

I said it to her new pediatrician. She looked more closely, waited, told me to sleep-train her.

I said it again when everything failed, when she wouldn’t eat solid food, wouldn’t sleep through the night, couldn’t make it through a cold without hospitalization. And finally, finally, someone found the something. When they did, nobody said, “oops.” They fixed her congenital heart defect, the source of every problem.

I was right, but it didn’t matter.

January 13, 2017

CVS Throws Us a Life Preserver

Several months ago, I wrote a post called EpiPens Are for Moms, Too. It was edited and republished by The Mighty (with my permission), because I felt that the information I’d gleaned from my experience trying to buy a EpiPen from a pharmacy was important enough to share with as many people as possible. This week, I have news about this experience that is even more important to share.

Some background: I have a severe, life-threatening allergy to seafood. I’ve reacted with equal intensity to shellfish and regular fish, and that reaction is terrifying. My mouth begins to itch — an early warning sign — and soon afterward, I begin to feel my throat go numb. Once that sensation begins, I know that I have precious few moments before I will begin to have trouble breathing. That’s my cue to get help quickly.

To avoid dying from the accidental ingestion of seafood, I carry an EpiPen. EpiPens are epinephrine auto-injectors meant temporarily to arrest a severe allergic reaction quickly so that the allergic person can get to a hospital. The term “EpiPen” is actually owned by a company called Mylan, which owns the rights to that particular model of epinephrine auto-injector and, this past fall, came under intense public anger for raising the price of these life-saving devices exponentially. You can read more about this price hike and the history of the EpiPen brand on Timeline.

After the frightening allergic reaction I had to fish oil in a chewable Vitamin C tablet in late 2015, which I wrote about in my original post, I went to my allergist for a refill of my prescription for an epinephrine auto-injector. Though I was careful to get a prescription that would allow me to choose a cheaper, generic auto-injector instead of the Mylan brand EpiPen, I had a very hard time getting the pharmacy to fill the prescription for me. I wrote in September about how the pharmacist first gave me the Mylan brand without asking, charging me $280, then hemmed and hawed about the existence of a generic, then claimed my doctor wouldn’t prescribe a generic and, finally, after I stood my ground, suddenly remembered a coupon from Mylan’s web site that would allow me to get the name brand for free.

It was a maddening experience to have all alone in a pharmacy with no one but myself to keep in check. If I’d had several children with me, I can only imagine that my patience for waiting might have given out long before the pharmacist “remembered” the Mylan coupon.

Yesterday, though, something interesting happened. Continue Reading…

December 29, 2016

Paper and Breath

I have spent most of the last two weeks in the grips of a terrible asthma flare, brought on by whatever powerful viral misery has a hold on the country right now. Though I’m not immune to illness — I get what I assume is the average number of colds each year — this one was particularly frightening for me, and I am convinced that it sent cosmic signals out into my community, since three separate friends left bottles of juice on my porch and ran like heck. As I curled under an enormous down blanket and drowned my tickling throat — which threatened constantly to send me into another bizarre, high-pitched coughing fit reminiscent of someone stepping on a puppy — I did little more than watch hours of television and poke half-heartedly at my phone from time to time.

This is not my normal position in the world. My normal life since children has been a patchwork of several kinds of activity: my part-time business in web site design and development (hire me!), childrearing, and housewifery. In the two weeks I spent on hiatus nursing my lungs along, I was able to pull a laptop onto the couch from time to time to douse the fires of my business, and my children managed to handle their own rearing at their ripe ages of 14 and 11. The housewifery, however, fell into the crevices between couch cushions, where it waited, growing funky and fuzzy with neglect.

Of course, I have a partner, a fantastic husband who is always ready to help — and he did. The dishes got done and the lizard got fed; children were driven where they needed to go when I could not summon the strength. However, there were several administrative tasks that I had intended to manage before the end of the year, and they began to weigh as heavily on my chest as the infection I was fighting. When I finally felt up to tackling them, I found it was literally The Last Minute, which, of course, is the most productive minute of any project. The most pressing of these tasks was the one billing-related job I’ve managed in our marriage since our younger daughter, Sammi, was born. This task, coincidentally, was born with her. Continue Reading…

September 15, 2016

Bike Back

In 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…

Swallow, My Sunshine

Feeding a Family in Medical Uncertainty

Category Archives: ER