Mary and me at a March of Dimes event
Within a 6-week span, we bought our first house, moved 400 miles to a new city, and became parents, 14 weeks early. We had no local support network. No church. No friends from work. No people to call in a pinch. No one to bake us casseroles or tie balloons on our mailbox. No one to walk our dogs or check our mail. We depended on our mothers who both lived hours and states away. They stayed with us for months while we commuted back and forth to the hospital.
I had never felt so alone. I was a first-time mother with a sick baby. I knew nothing of motherhood, and my quandaries were outside the realm of the mothers I knew. They breastfed babies, while I pumped milk for a baby who fit in my hand. Their babies were born breathing on their own, while mine struggled to work his way off oxygen for two months. As much support and compassion as our mothers showed us, I needed friends who were walking in my shoes.
Even my husband’s experience was vastly different from my own. He wasn’t healing from emergency surgery or pumping breast milk. He could not speak to my anger with myself, my disappointment in my own body, or my despair at what I saw as my failing the most important job I will ever have: bringing a life into the world.
I knew I needed other women, preemie mamas who were on the same journey. But, I had no idea how to find them. HIPAA laws protected each family’s confidentiality, so nurses couldn’t suggest friends and I was limited in the questions I could ask. I stumbled for weeks through the NICU, hollow-eyed and isolated, until the day I saw the notice taped to J’s monitor: Parents Reaching Out. It gave the date and location of the next NICU support group meeting, and I told myself that come hell or high water, I would be there.
That first meeting was a godsend. I heard my fears spoken from other mouths, and the other mothers expressed exactly what I was feeling. It may be a cliché, but, for the first time, I truly realized that I was not alone.
Sometimes, parents in the NICU are so weighed down by responsibilities and stress that we don’t think we can step away from our baby’s bedside for even 30 minutes. Our lives are dictated by visiting hours and feeding times and brief moments to talk to doctors; if we leave our post, we’ll miss someone or something, or even worse, our baby will suffer in some way. Maybe parents simply shy away from talking to strangers because they are too exhausted in every sense of the word—it is just too much to have to meet one more new person in a place full of strangers.
But, I encourage all parents with a baby in the NICU for any length of time to reach out, where and when you can. The friendships you make in the NICU may help you survive those difficult days and may extend into the months and years after the NICU. These people understand your journey without you even opening your mouth to explain it. They know doctors, nurses, specialists, and therapists, and those resources can be invaluable. They can give advice on anything from insurance claims to Synagis injections. They will visit you when you are under the dreaded winter lockdown, and they will attend NICU reunions with you. They will likely be the friends telling you that you’re not crazy, that you are strong enough, and, most importantly, that you are not alone.
That is my Mary. We’ve never lived in the same town. We often go months without seeing each other, but I will forever be grateful for the memories she shares with me. She had four babies at one time, while I struggled with one, but she always made our concerns equal. We talked for hours in the hospital, which brought color to a dark place for me. Like schoolgirls, we giggled about the ridiculous things that happen when you spend months in a hospital. We swapped stories about doctors, nurses, treatments, and therapists.
Our friendship grew through trips to each other’s houses when our preemies couldn’t yet venture into public. We texted and called through all the first-year milestones. We met at the zoo with strollers full of preemies and walked in March of Dimes fundraisers together. Two years after I left the NICU with J, Mary was one of a handful of people I texted from the hospital when I had preeclampsia, I felt like I was dying, and I knew I was about to have another 2-pound baby. I asked her to pray for me, and I knew she would.
What began as a NICU lifeline has grown into a sweet friendship. Now that we have come out the other side, we mark all the big moments together: birthdays, first days of kindergarten, graduations. She was in the hospital hallways with me, down in the trenches with me. She even held my babies before most of their family did. No one else watched my babies suffer, survive, and finally thrive, and no one can celebrate those sorrows and joys in quite the same way.
We all need a Mary in those dark corners when we feel trapped and abandoned. To this day, I have a circle of women I rarely see in person, but they celebrate life after the NICU with me. I met most of them through the Parents Reaching Out meetings, and the rest I’ve found through my own reaching out when I see an opportunity.
NICU parents: Don’t let your pain numb you from all the other parents walking in your shoes. Accept support when you need it. And once you’ve left the NICU, don’t be afraid to reach out to those parents still there. Sometimes, you desperately need a friend, and sometimes you are that desperately needed friend.
Mary, me, and our kids at a NICU reunion