This is a modified version of a sermon, “Resilience and the Bonds of Fellowship,” which I delivered at First Church in Jamaica Plain, Unitarian Universalist on August 30, 2015.
Until June 2014, Courtney and I were experiencing a normal, healthy pregnancy. We went to prenatal appointments, began getting the nursery ready, and read What to Expect when You’re Expecting together in bed each night. When we read that the baby was the size of the period at the end of the sentence, we started calling it “dot.” We experienced the joy and anxiety of seeing the first movements of embryonic life forming inside Courtney’s belly during the ultrasound tests.
Everything changed on the morning of Monday, June 16th. Courtney called her OBGYN clinic complaining of a persistent headache and the nurse told her to come in right away. When we got to the clinic, her blood pressure was dangerously high. The nurse took it a second time. The doctor came in and took it a third time. “I believe you may have preeclampsia. You have to go to Beth Israel immediately. They may have to deliver the baby in the next 48 hours.” The baby was not due for over three months, so the doctor’s words were unfathomable to us.
In hindsight, we remained relatively calm. On our way to Beth Israel, we stopped at the house to grab our hoodies, a water bottle, phone chargers, books, and crossword puzzles. We were not preparing to have a baby that night. We packed items to get through a long night in a slow moving hospital ward. They would conduct diagnostics, give Courtney blood pressure medicine, maybe place her on bed rest.
Once we got to Labor and Delivery, things started moving very fast. There were three or four medical personnel in the room at all times. They did blood work and urinalysis. When the lab work came back, they told us Courtney had preeclampsia and that she might have to deliver the baby. The high-risk delivery doctor came in. He asked Courtney if she had ever heard of preeclampsia. She said, “Duh… Downton Abbey.” A major character in that Edwardian-era TV drama dies in childbirth from preeclampsia. With perfect comic timing, Courtney said, “Please tell me this ends better, Doc.” Everyone in the room laughed.
About an hour later, the high-risk doctor came back into the room. Courtney had a severe form of preeclampsia called HELPP. Even as we spoke, Courtney’s vital organs, including her kidneys and liver, were shutting down. There was significant risk that she could have a seizure or a stroke right then and there. To avert this, the baby had to be delivered immediately. The OR was being prepped. It was go time. We were having our baby.
I was not allowed in the OR because Courtney had to be placed under general anesthesia. We had to say our “I love you’s.” At that moment, Courtney’s life and the life of the baby were both in serious jeopardy. I have never been so proud of Courtney, nor have I ever seen anyone so strong in the face of adversity. I held back my own tears in a show of solidarity. I wanted to be strong for her at that moment.
Suddenly, the entourage of medical personnel whisked Courtney off to the OR and I was left in the room by myself. The emotional momentum of the previous six hours caught up with me. Suddenly alone with my thoughts, I was overcome by a tidal wave of conflicting emotions.
As I paced back and forth, I saw a clear visual image in my head. It was a machine displaying several columns of lights, like a huge sound board in a music studio, except each set of lights represented one of my emotions. The lights in every column were pulsing all the way to the top. I was experiencing all of the major, seemingly conflicting emotions, at the same time: Fear mostly, but also joy and excitement about becoming a father, anger that it was happening in such an unforeseen and traumatic way, anxiety about what would happen, awe in Courtney’s strength, and bewilderment at the entire situation.
Courtney and the baby made it. Lucy was born weighing just one pound, six ounces. Two days after she was born, we met with the attending physician and a social worker. Dr. Grey had a calm and reassuring demeanor. He patiently reviewed each of the interventions they were taking to keep Lucy alive. At one point, he said, “When Lucy goes home…” and Courtney said “Knock on Wood.” Towards the end of the meeting, Dr. Grey said, “I want to get back to what Courtney said earlier about knocking on wood. I just want you to know that we fully expect Lucy to survive and go home with you.” Courtney and I broke down in tears. Amidst everything we had been through during the previous 48 hours, no one had said that to us. Until that moment, we had no idea what her prospects of survival were.
Lucy spent twenty days on a ventilator. During that time, she could not be removed from her incubator for us to hold her. The best we could do is place our hands on her through two port holes on the side of her isolette. We could not even stroke her gently because her skin was not yet fully developed. That’s how fragile she was. We waited three long weeks for the first opportunity to hold her in our arms. On that day, the nurse carefully removed Lucy from her incubator and, while still attached to myriad wires and tubes, placed her tiny body gently on Courtney’s bare skin. At first, we could only do this Kangaroo Care for one hour every other day, so we each got to hold Lucy for one hour every four days.
Six weeks after Lucy was born, Courtney’s mother collapsed and went into a coma. We learned from her oncologist that her breast cancer had spread throughout her body. He had been prepared to tell her the following Monday that she had at most one month to live. We made the painful decision to take her off of life support, with the hope that she would regain consciousness. We were told she would live for hours or days, a week at most. Before she was extubated, we all stood around her bed in the Intensive Care Unit, while the priest administered last rites. Within a few days, she regained a semi-lucid consciousness and we were able to spend some precious moments with her.
For the next three weeks, Courtney and I shuttled back and forth between Lahey Hospital in Burlington, where we provided end of life care to her mother, and the NICU, where we provided beginning of life care to our daughter. It was one of the most challenging times of our lives. And through it all, Courtney was breast pumping 8 times a day, every three hours both day and night, to provide vital sustenance to our daughter. I did my part by helping her set up the breast pump, washing the bottles, and storing the milk.
The love and care we received from the NICU staff during this time was incredible. The social worker we had gotten to know so well met with us daily. We gave her permission to let the rest of the NICU staff know about Courtney’s mother. Every time we called or entered the NICU, we were asked how we were doing, if there was anything we needed. This is when the NICU staff became our NICU Family. Our routine there was familiar. The unit, with its softly dinging bells and distinct hospital smells, was comforting. I said at the time, you know you’re going through a rough time in your life when the Newborn Intensive Care Unit becomes a place of solace.
In September, Lucy made some good progress. She was growing each day. She graduated from her isolette to a crib. She started bottle and breast feeding. We had an eye toward discharge. We envisioned moving on from the NICU and trying to have a more normal experience at home with our baby.
But the progress made in September gave way to several painful setbacks in October. Lucy failed her Swallow Study. She was silently aspirating her food, which shocked everyone because she was such a stellar eater. In an instant, she was NPO – no oral feeding at all. She would have to be fed exclusively by a G-tube surgically implanted in her stomach. She would also be coming home on 24/7 Oxygen support. At the time, Courtney said we were experiencing a change in location, not situation. We called our home the Roslindale NICU.
Lucy spent 141 days in the Beth Israel NICU. By the time she was discharged, she was the oldest baby in the unit and we were the veteran parents. Walking out the front doors of the NICU with Lucy in a stroller felt surreal. This was the place where Courtney and I became parents. We knew how to care for her in collaboration with the nurses we had grown to know and trust. Now we had to say goodbye to our NICU family. For almost five months, they provided love, care, and compassion not just to Lucy, but also to us. But once you walk out those doors, you can never go back except as a visitor in the outer hallway. We were once again full of conflicting emotions: joy, sadness, fear, and anxiety.
We tend to think about resilience as a quality possessed by individuals. “The tree that does not bend with the wind will be broken by the wind” is a lesson taught by an ancient Chinese proverb. To be resilient, we must not let the gusts that blow through our lives knock us down. We do this by adapting to difficult situations and remaining open to the lessons that even traumatic experiences can teach us. Conservatives sometimes point to the resilience of those who pull themselves up from poverty to justify cutbacks to social welfare programs. If one person can do it, why not expect the same from everyone facing challenging circumstances.
I would like to offer a different, more communal metaphor for thinking about resilience. Instead of a solitary tree bending in the wind, I would like you to think about Emperor Penguins. If you have ever seen the documentary film, March of the Penguins, then you know that while the mother penguins are engaged in a several hundred mile quest for food for their newborn baby, the fathers stay behind to keep the eggs warm until the mothers return. But what is even more remarkable about these stay -at-home dads is that they take turns standing at the edge of the pack where the winds are the strongest and the air is the coldest. They rotate in such a way that no individual penguin has to endure the harshest conditions alone. They each do their part so that all of the families can survive and thrive.
Resilient individuals are part of resilient communities. As it turns out, this communal concept of resilience is borne out by research. We heard in the second reading about a low income neighborhood in Chicago that survived a historic heat wave. People in Auburn Gresham knew their neighbors. They had block associations. They had church groups. “During the heat wave,” a long time resident said, “we were doing wellness checks, asking neighbors to knock on each other’s doors.”
Studies have identified several key environmental factors that contribute to resilience in children, including a feeling of being connected to one’s community. I saw this first hand in the alternative high school I ran in Lowell for three years, where we helped engage previously disengaged students through an intense focus on relationship building, community building, and youth voice in decision making. Without those things, our students would not have shown up to school in the first place.
The most resilient person I know is our daughter, Lucy. Like any baby born at 26 weeks, she had a traumatic start to life. From the moment she was born, she has needed 24/7 Oxygen support and a host of drugs and medical interventions. In her first months of life, she was intubated, had central lines and pic lines drawn, had a spinal tap, ECGs, EKGs, NG tubes down her nose and throat, G-tube surgery, and countless x-rays. Through it all, she maintained a remarkably upbeat disposition. After myriad procedures, she always bounced back quickly and was soon smiling again like nothing had happened. During her first weeks of life, the doctors and nurses all described Lucy as “feisty.” “She’s a fighter,” they said. We clung to those words like pieces of drift wood after going overboard in a turbulent storm at sea.
At the same time, we know that Lucy survived because she is a member of several important communities. First, there is the medical community in Boston. Advancements and innovations in medicine have made it possible for a baby born so early to survive. Micro-Preemies born in previous eras faced very different outcomes, as do babies born today in many parts of the world. In addition to the medical expertise and specialized equipment, Beth Israel also provided holistic care that placed great value on our dignity. From the beginning, we were invited to be equal partners in Lucy’s care, attending rounds on a regular basis. We also drew emotional strength from the love and care we received from our NICU family.
Second, Lucy qualified for MassHealth at first because she weighed less than one kilogram at birth and then due to her ongoing medical needs. This public health insurance program has filled the many gaps in coverage left by private insurance, including co-pays for prescriptions, medical supplies and equipment, and 74 hours per week of home care nursing. Without this support from the taxpayers, we would have faced significant financial hardship. I don’t know how we would have fared if we did not live in the Commonwealth of Massachusetts. Sharing our common wealth is another example of community coming together to support the resilience of its members.
Third, Courtney and I benefited from highly supportive workplaces. Before Lucy was born, I was expecting two weeks of paternity leave. Several days after she was born, my supervisor explained that, due to our unique circumstance, I would be getting eight paid weeks off. Hearing this brought tears to my eyes. A huge weight was lifted off my shoulders as a result of my employer’s generosity and caring. Courtney’s firm was also incredibly flexible, telling Courtney to take off as much time as she needed to recover and take care of Lucy. We benefited from generous and understanding employers, but realize that most families do not have such luxuries. It is long past due for Congress to mandate paid family medical leave, a policy proposal fully supported by 80% of Americans.
A fourth community that has helped our family survive this challenging year is this one: First Church in Jamaica Plain. The day after Lucy was born, we received a visit from Terry Burke, our longtime minister, who had recently retired as a result of his own battle with cancer. Terry took the time to be with us and comfort us at that difficult moment in our lives. His visit meant the world to us and we will remember it always. Later that day, we received a visit from our First Church friends, Sarah and Joy, who brought us a care package to help us get through our NICU experience. From the day Lucy was born, there was a long line of church members asking what they could do to help us. Many brought us home cooked meals and some came to our house to help clean up our yard when it became overrun with weeds and fallen leaves. Though we have not been able to attend services very much this past year, we have never felt more connected to this community.
The second reading was a poem by Theodore Roethke, a poet to whom I was introduced by Terry during an e-mail exchange earlier this summer. “In a dark time, the eye begins to see | A fallen man, I climb out of my fear.” It is through suffering and pain, the poet is saying, that we begin to see the world and ourselves in a new light; that we are transformed in times of crisis. There is something reassuring about this.
Courtney says we now have two modes of existence: crisis mode and extreme crisis mode. Crisis mode is our new normal: loving and caring for a child with complex and chronic medical needs. Extreme crisis mode is when Lucy has an acute health issue that requires being admitted to Children’s Hospital, as happened twice just last month. We have learned a great deal from living in a state of almost constant crisis. Humor becomes essential for keeping your sanity. “Please tell me this ends better?” Courtney told the doctor after learning she had preeclampsia. You must find ways to laugh – at yourself, at your situation – even in your darkest hour. I credit the nurses at Beth Israel and Children’s for helping us find humor in our life in the hospital. They helped us tap into the joys of parenting even while we were scared out of our minds.
Crisis mode also requires a radical reorienting of your priorities. Things you used to spend time dwelling on, suddenly seem unimportant. You learn what is most important in your life. You negotiate a new relationship with time and gain a new appreciation for what a precious gift it is. You find joy in simple pleasures, previously taken for granted, like being able to relax and enjoy your morning coffee or simply take a stroll in the Arboretum. You also discover who is most important in your life. True friends step up to the plate. They find ways to show their love you through creative acts of kindness.
We spent our first Christmas as a family in the Children’s Hospital NICU. Somehow, it seemed a fitting end to the year we just had. Courtney and I up woke early on Christmas morning, threw winter coats over our pajamas, and drove to Children’s, where we opened up presents with Lucy. Two friends gave us a gift certificate to a nice restaurant in Kenmore Square. “No one should have to eat hospital food on Christmas Day,” they explained in their note.
After we finished our meal, Joy, Aaron, Elena, Ista, Persis, and Lennon came over to Children’s with a bottle of wine and a dessert prepared by Margaret. We gathered together on the balcony overlooking the hospital lobby, where we ate our homemade tart tatin and shared a Christmas toast to Lucy’s health, while the Elena and Lennon played together. We were a small colony of penguins huddled together so that, on Christmas Day, none of us would be left to face the wind all alone.