During J’s 91 days in the NICU, I was so focused on bringing him home that I really didn’t think past the car ride home. All I knew was that things had to be better when we were together as a family, when I could really get to know the baby taken from me when he was too tiny, when I would feel like a real mother and not just a visitor in the NICU.
During J’s discharge, a social worker met with us briefly to explain that because of J’s prematurity, he was eligible for free therapy for his first three years of life. Her words meant nothing to me. I was only focused on surviving the NICU, not the aftermath, and I was a brand new mother who knew plenty about kids but nothing about the developmental milestones of babies. I understood that J would be delayed, but I really had no energy to put into dwelling on it.
J’s first months home were brutal. When my husband left for work everyday, I struggled with J at home. He was an alert 3-month-old trapped in a newborn body, but it wasn’t the soft, floppy newborn bodies I’d always imagined. J’s restless, rigid body had a life of its own; he couldn’t hold his head up or raise his hands to his mouth, but his legs were so stiff that, if I had let him, he could have stood propped against the side of his pack-n-play. As a result, he screamed for hours at night, probably railing that his body wouldn’t let him fall asleep even when he was miserably tired.
I went through all the motions with our social worker, setting up evaluations and scheduling therapy, but if I’m honest, I was a little ambivalent. My attitude was that I needed to give J whatever support I could, but I had no idea what that support might mean.
Our little family had been tossed into a whirlpool that was drowning me, and into this difficult place in my life walked a team of people to help us: a social worker, a developmental specialist, and a physical therapist. It is no exaggeration to say that they saved my sanity. They listened to me, they gave validation to my frustrations, and they calmed my fears. They gave me doses of hope and reality as I needed them, and they were friends to me during a very lonely time in life. Our physical therapist swooped in with ideas and tools to help J loosen his muscles, and when our developmental specialist asked what we needed most and I joked about a babysitter, she knew I wasn’t joking. She suggested we call her babysitter, who became our only babysitter for J’s first four years.
These people had appointments to see J, but I was the one who needed saving. Sometimes, as parents of preemies we forget in all the rush to do right by our children that we deserve support, compassion, commiseration, and encouragement too.
By the time M arrived, I was a seasoned preemie parent, but I had two children with special needs. J’s team became M’s team too. By that point, we had a physical therapist, a speech therapist, and an entire preschool that specialized in developmental delays to support us. Now, I look back and see these people as prayers answered.
I believe early intervention is crucial for preemies because the flexibility of a young brain allows for a baby or toddler to rewire around damage done by being born so early. Some of my friends have opted out of therapy, believing that children will catch up on their own, and some of them have been frustrated by a therapist’s recommendations. But, my experience has been that the women who worked with my children didn’t just support and encourage my babies; they saved me. At a time in my life when I spent many months trapped in hospitals and at home with tiny babies, our therapists became my friends, and in those early years, only my husband and I knew our children better than they did. Before I had preemies, I never could have imagined the love that people outside our family would give our babies.
Last week, I showed J a photo of himself and his sister with their physical therapist, who saw our family every week for 3.5 years. He asked who she was, and I almost cried when he told me he didn’t remember her, though it means she did her job well. We are so fortunate that a baby given his odds has no memory of all those hours we spent in therapy together. Now, I am the only bearer of that history, all those memories are all my own. But, isn’t that what we all worked so hard to accomplish? J’s team of therapists, teachers, and social workers worked with me toward a life for J where he knows nothing of all his challenges and he runs and plays and laughs and talks with all the other kids his age.
The words “thank you” don’t even begin to do it justice.