I called it the Long Winter, the one that barricaded me in my home with my preemie son. So far, it was the most challenging period of my life. People said that they felt sorry for us during the 150 days we had a preemie in the NICU, but as gut-wrenching as both NICU stays were, for me the Long Winter was worse.
When we left the NICU in October of that year with our son, we were inundated with the horror stories of RSV, the virus that could be fatal to a baby as fragile as J. He didn’t look fragile. In fact, he looked like a 6-lb newborn, not a 3-month-old born 14 weeks early. After more than two months on oxygen in the hospital, he was breathing on his own. He was even slightly chubby. Nothing about him suggested that RSV or the flu could cause life-threatening complications.
We had moved to a new city six weeks before J was born. Our closest family was a 5-hour drive away. I had no co-workers in our new city and no way to meet people. We were so alone.
During the Long Winter, we couldn’t go to playgroups. We couldn’t take J to church. I ran errands during my husband’s lunch breaks and at night while J slept. People didn’t call, because they said they assumed we were busy. I’d look up from a string of days and comment to my husband that I hadn’t seen or talked to an adult other than him in three days.
I thrive on human relationships. I need to interact with people to feel whole. Of course, I was overjoyed to have J home. He was a delight, and I relished his slow progress. But, I felt guilty at my conflicted emotions: gratefulness and despair. I felt that I had no right to complain when some moms didn’t leave the NICU with a baby, so I muddled through each day.
I wiped door handles with alcohol wipes. My husband changed his work clothes before he handled J. We were vaccinated. We washed hands, even after touching mundane items like our mail. For five months, we rarely took J to a public place and never to one where he had contact with other people.
If our family and friends thought we were excessive in our protection of J, only a few actually complained. We had a few “germs build immune systems” comments. And there was the time a houseguest kept suggesting ways to spend our Saturday, conveniently forgetting what the word public meant. Breakfast at Cracker Barrel? A trip to the Apple Store? It was a backhanded way of telling us we were being overprotective that cut me to my core.
Were we overprotective? Every precaution we took was one that a doctor or a nurse suggested. Our NICU friends were a respite for me, because they reminded me that I was only following the advice we’d been given. We laughed at how crazy we were, a way to defuse the negative comments we received from some of the people we loved best, people who didn’t understand our journey. I can also say this: my son is fantastically healthy now, and I am not sorry I gave him that winter to get stronger before I introduced him to the world.
During that time, I learned ways to cope, like finding all the open-air public places where we could safely take our son. On pretty days, we’d look at plants at a garden center, or we’d go to the zoo. In the early spring, we ate outside at restaurants with patios. We had a few playdates a month with other NICU families who were also on lockdown. I maintained a connection to the outside world through Facebook and blogs, and I invested in my relationships with J’s therapists, who were sometimes the only adults I saw on a regular basis. I also threw myself into finishing my dissertation; even if I only wrote for thirty minutes a day, it gave me some professional satisfaction. I began reading again, my dearest hobby that has supported me in all life’s rough patches. And on really long days, I told myself over and over that this phase would not—could not—last forever.
And it didn’t. I remember our first real public outing with J. We sat at a table outside our favorite breakfast restaurant in the warm sunshine and waited for our food. J was 8 months old. We looked like a normal couple with a full-term baby. A stranger offered to take our picture, one of the first of us as a family outside of the NICU. In the picture, my smile is enormous.
The Long Winter was over.