April 15, 2017

Spring Breaks: 2011-2017

It is April 7, 2011, and my family is giddy.

Sitting around the sticky table of a local frozen custard shop are my daughters and husband, each of them with a mountain of gooey dessert: piles of custard under clouds of whipped cream and rivers of fudge. My younger daughter, aged 5, is grinning ear-to-ear. I’m snapping pictures like the mother of a baby trying solid food for the first time. At one point, I step outside to breathe the fresh air of a world restored.

For the ten months prior to today, my little girl has been on a path to discovery, she and her team of doctors searching for the food protein that’s causing the strange patches of white blood cells in her esophagus, the patches that were keeping her from swallowing well. For ten months, she’s been avoiding a list of common allergens — dairy, soy, egg, nuts, and wheat — and undergoing tests to see if the culprit could be found. Earlier today, we got the news that only one food was left to be added, since all the others had seemed to cause her no ill. Adding that last food — dairy — means that she can eat out at any restaurant she liked. It means that, for the first time in ten months, we can travel without worrying about her food.

We leave the frozen custard shop and embark immediately on a road trip. We feed her everything she’s been missing: restaurant pancakes with butter and syrup, cheese popcorn, candy bars, pizza, string cheese and yogurt. For the first time in nearly a year, I don’t carry a big insulated bag full of food for her. We rejoice, but under the rejoicing is the knowledge that this is just another food trial. It’s both a first meal and a last — this is the last food trial, and everyone expects it to be a failure.

Spring break, 2011: last meal. Continue Reading…

March 24, 2017

Meeting the Multitudes

Last week, I was trying to pick up my older daughter from school a little bit early. She’s a freshman, so this is our first year as parents at the high school and I didn’t know the procedure for early dismissal. I approached the woman at the desk in the security office with my driver’s license and told her my daughter’s name.

“Did you call the attendance office?” she asked.

I hadn’t. Did I need to?

“Ma’am, you can’t just walk in here and take your kid home whenever you want! You have to call ahead so she can get a pass!”

I let that sink in for only a few seconds before I realized that, effectively, she was telling me that she would not release my daughter to me. I tried reasoning; I’m her mother, I’ll follow the procedure next time, she had a doctor’s appointment, I’ll call attendance right now. Nothing worked. After a series of more and more irritating exchanges — during which I got cranky and then apologetic and then cranky again — she told me I could wait outside for my daughter, who would be dismissed with the rest of the school in 16 minutes.

I stomped and huffed and paced outside in the snow, called and rescheduled the appointment, and composed an email to the school administration in my head. As I began to recognize the feeling underlying all of it as panic, I traced it back as far as I could. You can’t have your daughter, I heard in my head. You can’t have her. It reminded me of her early days in the hospital nursery under bilirubin lights for jaundice, me forbidden to take her out of her glowing bed for more than a few minutes at a time. It reminded me of being in the hospital after her little sister’s birth, still numb from my c-section, realizing that I could not move, not even to rescue my big girl from anything that might befall her before the anesthesia wore off. The feeling of helplessness even extended to generational memory from the holocaust, stories of family who had lost parents and siblings in the horrors of concentration camps or Einsatzgruppen killings in the forest. You can’t have your daughter was a triggering sentence for me.

Realizing that I was operating with the deeper, more primitive part of my mind helped a little — it gave me reason for my feelings of panic over a situation which seemed otherwise just annoying and inconvenient. I had only to wait 16 minutes, and my daughter would be there. Still, the story I carried with me — the story of you can’t have your daughter — was powerful. It informed all of my behavior that day. Continue Reading…

March 10, 2017

The Phones Our Insurance Saved Us

Our family, unlike the majority of Americans, has spectacularly good health insurance. It’s provided by an employer, and because of my husband’s combination of high-demand skills, excellent work ethic, and good luck, we’ve had the same coverage for more than a decade. Here’s how it works:

Every two weeks, my husband’s employer deducts $196 from his paycheck for our medical insurance.

Despite that, beginning on January 1 each year, we pay for 100% of the cost of every doctor’s visit, every prescription, every blood test, and every other medical cost until we have spent either $1,500 per person or $3,000 total for our family of four. That means that, until we have reached into our own pockets and paid $3,000, our insurance has not even begun to kick in.

After we’ve spent $196 every two weeks and $3,000 for medical costs, our insurance begins to pay 80% of every bill that comes in. We pay for the next 20% of each bill — a welcome change from the 100% we’d been paying before that.

As a family, once we have spent $7,000 on medical costs, our insurance begins to cover 100% of whatever medical expenses come next. Let’s review, then, the cost of medical care for our family in a year when someone gets really sick:

February 23, 2017

Across the Border

I’ve been thinking about resolution and falling action, lately.

In any compelling story, there is a natural building of intensity that leads, as we all know, to a climax. A couple searches for each other, meets, falls in love, and commits or separates, and they’re left different, marked by their experiences. Or: a world is beset by confrontation and battle, factions emerge, one side is victorious or decimated, and a new world is born. Or: a child is born to a yearning mother, grows sick, struggles, stumbles, regains her footing, and is cured, revealing mother and child older, changed, and almost unrecognizable.

That’s the resolution. What happens next? What is in the falling action of my story, the third story, the one with a once-sick now-well daughter, and a once-frightened now-what mother?

My daughter is eleven now, almost three years past her final surgery, two-and-a-half years past the time she first began eating well, two years past her dismissal from all her specialists, two years past the first major gains in height and weight she’d had since her babyhood. I haven’t had reason — real reason, justifiable reason — to worry about her health in the last two school years.

It has been, in many ways, like becoming a mother all over again. Continue Reading…

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…

Swallow, My Sunshine

Feeding a Family in Medical Uncertainty

Category Archives: hospital