Being Brave

Fear, Heartache, and Carrying On  

Six years ago, the bravest thing I ever did was to have a second child after experiencing postpartum depression following the birth of my first son, Henry. Since then, I have come to realize that caring for my younger son, Foss has entailed more courage and persistence than I ever needed before.

With my first child, I had a normal pregnancy and delivery, but I began experiencing symptoms of PPD and anxiety in my third trimester. By the time Henry was born, I was already exhausted. We struggled with breastfeeding and he had colic. I was a hyper-vigilant new mother with a newborn who never seemed to sleep. Within a few months of his birth, I was having racing, obsessive thoughts about Henry’s well-being, crying daily, and unable to sleep for more than a couple of hours at a time. I weighed less than I did before I became pregnant and my stomach hurt every day. I felt isolated, periodically enraged, trapped, and terrified that I’d made an irreversible mistake in becoming a mother.

My lowest point came one spring night when Henry, who was five months old by then, my husband, and our cat were all sleeping soundly. I went into the kitchen and took a juice glass from the shelf. I carried it outside to the front stoop, where I stood on the top step and threw it into the empty street. I could no longer contain the fire in me that I had been trying so hard to tamp down. I wanted to physically release my frustration and ineptitude through the shattered glass. I felt out of control and desperate to feel like myself again. My life had become merely an existence, devoid of beauty, joy or laughter. I wanted to disappear. The next day I called a psychotherapist. Gradually, I began to recover from PPD.

Sometime shortly after Henry’s first birthday, I sent out an email to a local parenting group and asked if anyone would be interested in starting a PPD support group with me. I researched peer support while I was in graduate school for social work and I had looked (in vain) for a local support group when I was beginning my recovery the previous year. This is how I met my partner and friend, Chris, who is a postpartum doula. Together, we co-founded and then co-led Brooklyn PPD Support for seven years. We created a website that lists local resources for women experiencing perinatal mood disorders, attended training seminars, provided phone and email support to mothers and their families, spoke about our experiences at nearby hospitals and community centers, and held free monthly meetings.

When Henry was two years old, my husband and I began talking about having another child. I had lost my only sibling, Alexander, who died of a brain tumor when I was twelve and I wanted to spare Henry the loneliness I felt as an only child. And, I didn’t like the thought of him being alone in making decisions about his father and me when we are elderly.

I got pregnant, but I was nervous about having another child. However, I had learned that there were several things I could do to decrease the chance that I would have PPD again the second time around. When I told my mother about my second pregnancy, she and my step-father decided to sell their retirement home in Florida and move to Brooklyn to help us adjust to the new baby for as long as we felt we needed their help.

I felt prepared for another baby because we had several safety nets in place. What I didn’t know at the time was that all of the precautionary measures we had taken to reduce the chance of my spiraling into PPD would form the net that caught us when Foss suffered a massive stroke when he was five days old.

On the day when Foss was born, I remember looking out the window of our hospital room and seeing babies and children in stainless steel cribs in the pediatric wing across the street from the labor and delivery wing. I held Foss in my arms, loving him from the moment he was born, and thought about how sad the parents of those sick children must be.

He was nursing like a champ until his fifth day of life, when it became difficult to keep him awake long enough to get through a full feeding. He was intermittently fussy and sleepy, but didn’t seem hungry. That night, I bundled him up and took him in a taxi to the emergency room. He had become lethargic and I knew something was wrong.

Foss was admitted to the pediatric intensive care unit (PICU), where he was intubated and placed in an incubator. An MRI revealed extensive damage to several parts of his brain. Multiple neurologists told us it was possible Foss would never walk or talk. We had suddenly become the parents I was thinking about when I looked through our hospital window just a few days before.

Once stabilized, Foss spent another two weeks in the hospital. I confided in my husband that I would rather Foss die than live and be severely disabled; and yet I was terrified that we were going to lose him. I later realized that the fear of the unknown and my own ignorance were fueling such thoughts.

There is an unwritten rule in PICUs, which says parents must spend the night at their child’s bedside. It was an assumption that friends, family, and the hospital staff all made while we were there. My husband and I were with Foss every day, all day, but at some point each night, we went home together to sleep in our own bed and left him in the care of the diligent, kind-hearted nurses.

When Henry was born, one of the most difficult challenges I faced was that I couldn’t seem to access any instincts to guide my decision-making. When Foss was born, my gut told me I had to take care of myself so that I would be strong enough to take care of my boys. Perhaps it was my therapist who helped me to reach that point, or it was my own mother, who had demonstrated how to care for a medically fragile child without obliterating herself.

There have been many times throughout the course of Foss’s young life when I worried that I wasn’t making the right decisions for him, but I never have to make them alone. My husband and I went through the crises together and survived with our relationship intact because we repeatedly chose not to isolate ourselves or to withdraw into our own, private worlds of suffering and longing.

Foss has multiple disabilities, including cerebral palsy, cortical vision impairment, and a seizure disorder. He has had surgery on both hips and he was hospitalized with a viral menengitis on his first birthday. He takes several medications and is non-verbal and non-ambulatory. But, today he is healthy. Today he can giggle, eat Pop Rocks and duck pâté, and he can hug us so tightly. He loves music and the wind and water. He brings joy to our lives every day. We don’t know what caused the stroke, and we have let go of trying to find an explanation.

I am no longer so reluctant to ask for help from people when I need it. Henry has grown into a healthy, spirited boy, who is sensitive to the different needs, abilities, and disabilities that we all have. Our friends, family, neighbors and colleagues have given us enough money to send Foss to a small private school in Manhattan, where he is a vital part of a nurturing community. I have shown up at friends’ doorsteps in the middle of a snowstorm, momentarily drained of hope and energy, only to be ushered inside and given warm clothes and a bed in which to recuperate. I have crumbled under the strain of caring for a child with special needs, saying “I don’t want to do this anymore” many times, but I have put myself back together again because the world is full of good people who want to help. Once, my greatest fear was getting PPD again, but I didn’t. Now, every day that I am a mother to my sons, I am braver than I was before.