The Tools of Resilience

“It’s funny: I always imagined when I was a kid that adults had some kind of inner toolbox full of shiny tools: the saw of discernment, the hammer of wisdom, the sandpaper of patience. But then when I grew up I found that life handed you these rusty bent old tools – friendships, prayer, conscience, honesty – and said ‘do the best you can with these, they will have to do’. And mostly, against all odds, they do.”  -Anne Lamott

Between December of 2013 and April of tools2014, my husband and I method-acted our way through parenting. As we waited for what we hoped would be life-changing surgery for our eight-year-old daughter, Sammi, we knew that no good could come of either her or her eleven-year-old sister knowing what was ahead. We told our adult friends and our adult family members, but we let nothing slip through the age barriers we’d set.

For our children, those five months passed with an innocence we protected only slightly harder than we coveted it. Continue Reading…

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Wait. Breathe. Wait.

wait breatheIn late December, we received decisive word from the cardiothoracic surgeon that he could fix the tangle in our daughter’s chest. I was standing in a hotel lobby overlooking an indoor waterpark, crouched against the heating vents, waving on my family and our friends to go ahead without me. I pressed the phone to my ear, memorized the surgery date and, with all the time in the world, ended the call to begin the wait.

We had decided to wait nearly five months.

The surgery was both crucial and not-an-emergency. It had to be done, but it could be held off until a convenient time. Putting aside the sarcastic question of when is it a good time for you to risk your daughter’s life?, it seemed wiser to wait for the next school vacation, which was spring break. I sat there in the lobby for a moment, staring at the Christmas tree. It was impossible to picture the next months, how they’d spread out in front of us: both the last sumptuous buffet before a fast and the last ten miles of a triathlon’s bike ride before the marathon begins.

With no other choice before me, I put my phone in my pocket and made my way to the waterpark. Continue Reading…

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Not Her Heart

heartWe entered the children’s hospital on a dark December evening. We didn’t bring a child.

Up the escalator to the lobby, to the registration desk for our badges, we made our way through the mazes of floors and elevators until we reached a place that looked like nothing we’d ever seen before: a carpeted hallway, two small couches, and an empty coffee table outside a closed door with no window.

We were not visiting the doctor in an examining room, we learned. There would be no paper-covered table, no swiveling chair, no cheerful posters. We were visiting the doctor in his office itself.

The door swung open, and he shook our hands. “I remember you guys,” he said, smiling. “It’s nice to see you again.” Continue Reading…

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A Healthy Family’s Thanksgiving

Thankful TreeFood and shelter. Family and friends. Good schools and teachers. I’ve been grateful for them every year as long as I can remember. This year, I am thankful for much more.

This Thanksgiving, I am grateful that none of my family members are in the hospital. No one is eating their Thanksgiving feast off a white tray while others take turns visiting. No one is disconnected from the big family meal because her heart is too connected to the hospital room and the child who is stuck there.

This Thanksgiving, no one is waiting for test results or surgery.

This Thanksgiving, I am grateful that none of us are following a medically prescribed diet. No one is reading ingredients in someone else’s kitchen, saying “excuse me, but what’s in that sauce?” No one is unpacking small, carefully-labeled plastic containers that hold a facsimile of Thanksgiving dinner, subtly resting her arms over her plate as “dangerous” food is passed over it on its way around the table.

This Thanksgiving, no one is on edge because of ingredients or cross-contamination.

This Thanksgiving, I am grateful that my marriage is intact. My husband and I did not break under the pressure of our daughter’s medical dramas. We did not stop talking about our own feelings and dreams when we became stewards of the feelings and dreams of our children. We have not stopped liking each other.

This Thanksgiving, no one has fallen out of love.

This Thanksgiving, I am grateful that my family is alive. My daughter did not die in the surgery that changed her life eighteen months ago; my parents are here and active; my husband and my older daughter have not been taken in a car or plane crash; I have survived every bike ride and run I’ve enjoyed.

This Thanksgiving, no one new is missing.

This Thanksgiving, I am grateful for the ways our bodies work. No one is struggling to help prepare the meal with arms in slings or missing. No one is pushing a walker to the table. No one is swallowing their food into a kinked esophagus, or skipping the meal while being fed formula through a tube.

This Thanksgiving, no one has lost an ability we take for granted.

This Thanksgiving, I know that had any of these blessings been missing, we would have still been grateful for the others that remained. It would still be a holiday. There would still be joy, celebration, moments of grace. I know that to be true as well as I know that there is no end to the blessings I can hold up and say thank you, universe. Thank you for protecting us from these things which threaten to chip away at our happiness.

Thank you, universe, for the elegance of the human body, for human life and community, for love and endurance, for a bounty of ways in which we can nourish ourselves, for those who care for our hearts, and for the ability to recognize our gifts.

This Thanksgiving, I am grateful.

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A Test She Couldn’t Fail

glowheartWhen I was pregnant with my younger daughter, Sammi, I worked in an aging office suite with a highly-coveted tiny kitchenette. Other departments of the same non-profit had to go to the basement to retrieve and reheat their lunches, but our little corner of the building had a full-size refrigerator and a microwave.

That microwave must have been older than I was. In the years before having children, I often warmed my cold fingers in front of it as heat leaked out the seams in the door. Once I was pregnant, I wouldn’t even pass by the cubby where it rested if I knew someone was using it; I was afraid the radiation was seeping out with the heat, and I didn’t want to put my unborn child at risk of cancer before she was even born.

Then she was diagnosed with a rare congenital heart condition at the age of 13 months, and in addition to the chest x-ray she’d already had, she had to be put under general anesthesia so that her surgeon could get a clear picture of her vascular anatomy via computed tomography — also known as a CT scan. An IV allowed the flow of a contrast solution into her veins and arteries so that they would all light up in the scans. I sent her in — all sixteen pounds of her — and tried not to think about how much radiation she was absorbing. They needed those pictures. It was the only way to get them. Continue Reading…

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