My experience of infertility and the near-death of my newborn child fundamentally changed me. It changed how I respond to grief and to loss. It changed how I parent, how I engage in relationships, how I live.
When I was a young adult, I felt the power of being able to determine my path. I believed that if I worked hard, I could achieve the goals that I set. I thought that as long as I put in my effort, thoughts, energy, and hours, I could get the things that I wanted, the kind of life that I envisioned.
Our society is founded on those same ideas of independence, hard work, pulling ourselves up by our bootstraps, and achieving our dreams. It's based on a principle of control. We believe that as long as we are vigilant and hard-working, we can control our outcomes and our lives.
I had a plan that I would establish my career, then get married, then have a baby. As if those things would happen because I would work hard. And then I didn't get pregnant. And then I had one, two, three miscarriages. No matter how hard I worked at getting pregnant, it wasn't working like I planned. And that's when I realized that what I thought was control was an illusion.
I did get pregnant eventually. I was extremely lucky. After that, I returned to my illusion of control. I didn't eat tuna, or deli meats, or soft cheese. I took my vitamins and avoided sick people. I turned the kitty litter chores over to my husband. I ate well. It was my job to protect that baby and I worked hard at it. And then my baby was born with a life-threatening illness, with a serious loss of blood, with a dire prognosis.
My baby's illness closed off my illusions of control, once and for all. No matter how hard I work, how vigilant I am, how knowledgeable, how much research I do, how much effort I put forth, I cannot control events or outcomes.
This realization could have made me pessimistic, sure that everything turns out terrible no matter what. It could have made me fatalistic, making me think there's no use even trying.
Instead, it made me acknowledge the vulnerability of life. As my baby lay in a coma in the hospital, I thought, I didn't want this to happen, but it's happening. I really don't have control over any event or person in my life. The only control I have is my response. I don't know how much time I have with my baby, but I want him to see me smiling. I want him to feel my happiness, to feel me celebrating him. I want to see my baby, memorize his face and fingers and toes, and experience him as he is right now. Even if it's only for a very little time. Because I might have only this time. Because all I can control is how I choose to experience this uncontrollable life.
I learned a lot about grieving. My mom had a baby who died. She understood the lack of control and the vulnerability. She cried with me. She didn't give reasons for why it was happening. She didn't say things to make me feel better. She cried with me. And she prayed.
Some friends were too scared to acknowledge the vulnerability of life. They stayed away, unable to deal with it. They offered reasons why this was happening, from God's plan, to medical theories, to health or emotional reasons. They assured me that my baby would be fine. Or they assured themselves that this would never happen to them because they would ... have a baby at a younger age, not do fertility procedures, not go against God's will, not be so stressed, get more bedrest. Illusions of control.
We are all scared of our vulnerability. Things might not work out fine. Babies sometimes die. And for no reason.
And when babies die, we try to wrap ourselves in illusions of control. An illusion as to the real reason that this happened. An illusion of what we will do to prevent our own children from dying.
That is not to say that we don't do anything in response. I did not succumb to fatalism when my child lay in the hospital. I did not fall into inaction when he was diagnosed with pulmonary hypertension, cerebral palsy, nor autism. When babies die, when people die, we respond with appropriate action and measures to prevent loss as much as we can.
But when we are too frightened to acknowledge our own vulnerability and the vulnerability of others, we take away their space to grieve. There is honesty and honor and strength in acknowledging someone's loss without erasing their vulnerability or our own. When we think of reasons, of explanations why this tragedy happened to someone else, to a baby, to a child, we are actually disconnecting from the person experiencing the loss. Or disconnecting from other people. We are disconnecting because we feel too frightened, too vulnerable, too at risk for our own tragedies and losses.
And the tragedy in reacting this way is that we disconnect at the very moment that we desperately need to connect.
Sometimes babies die and there is no explanation. Sometimes adults die and there is no explanation. We are all vulnerable. But we can be here for each other, for the parents, spouses, sisters, brothers, grandparents, communities.
We are here crying together.