I remember scrolling through Facebook as I sat on the vinyl recliner in the NICU waiting for the nurse to help me hold my daughter, Nora. I remember JUF's jBaby Chicago posts, smiling families enjoying an afternoon at the Little Gym or local synagogue.
I felt so sorry for myself. By the time Nora would finally come home, my maternity leave would be long over. And even if I could take Nora to those events, she would be too fragile to be near other children for many months. I thought missing out on the magic of early motherhood was the saddest, loneliest thing I could imagine.
Still, I hoped for brighter days ahead, and at the urging of another Jewish mom of a recent NICU graduate, I reached out to my jBaby ambassador for an introduction while Nora was still in the hospital. The ambassador was wonderful, but the more we talked, the more I realized how difficult it would be for our family to participate in jBaby events.
"Milestones" were not a part of our vernacular. Nora wouldn't be learning sign language or crawling or transitioning to solid foods. The challenges our family would be facing had more to do with keeping Nora alive -- managing a sterile central line, administering carefully timed seizure medications, remembering to plug in apnea monitors and check dextrose levels, and troubleshooting a feeding pump attached to Nora's G-tube. We were living on a totally different planet from the families my ambassador was describing. I couldn't imagine how we'd relate.
I took solace in the early months in online support groups, spending hours on Facebook messaging moms near and far whose babies faced challenges like Nora's. While we certainly shared many experiences and feelings in common, I longed for a mom I could call or have lunch with who could really understand what my family was going through, and whose advice and judgment I could trust as we faced ever-more complicated decisions regarding Nora's care. I looked for events and in-person support groups in our area, but nothing was conveniently located or timed for a working mother, and nothing seemed targeted at the type of experience I longed for.
What I wanted more than anything was to talk with other parents like me about my fears and heartbreak, about how on Earth this could have happened to our families, and how we would all go on.
And then I saw it -- "Glickstein." Another Jewish family, here in Chicago, appeared in one of my Facebook support groups. I messaged them immediately and within days we were crying together at a Freshii restaurant near my office. The conversation was incredible. They were smart, easy to talk to, and so warm. Even though we'd grown up in different places and had never crossed paths before that moment, we immediately shared more in common than I had with anyone else we'd met over the 18 months since Nora was born.
I thought back to jBaby, and it dawned on me that we might not be the only two Jewish families in the Chicago area with children with complex medical diagnoses. I emailed my ambassador and from there it came together like magic. Within weeks, jBaby announced the formation of "Nora & Friends," a group for families like mine. The Glicksteins joined, and so did several other families I'm so proud to call my friends.
After our very first meeting -- just the moms -- I knew all those things I'd missed out on weren't lost to me forever. As we all told our stories, it was clear that we were going to survive this together, and we might even enjoy ourselves in the process.
Just a week after our first meeting, Nora was unexpectedly hospitalized. The jBaby moms brought me a care package, one only moms who've spent time in the hospital could have put together. It was perfect, had something for everyone in the family, and included warm socks for me for the cold hospital floor. Those socks still sit in my "go bag" for emergency hospital trips -- warmth for my feet, and more importantly, my heart.
The group has only been together a few months, but man, has it changed my life. Our playdates are so fun, our kids are such champions, and our conversations are so honest and helpful. We have a beautiful community all our own. I am so grateful, and so excited to grow together.
Lauren Schrero Levy is the founder of Nora & Friends and was recently named to Oy!Chicago and YLD's Double Chai in the Chi, Chicago's Jewish "36 Under 36" list.
Nora & Friends, jBaby Chicago's medically-complex and special needs group, is for parents of children five and under with cognitive and/or physical impairments impacting early-childhood development. jBaby Chicago recognizes that these children are unlike others their age and that their parents have unique concerns. They want to bring these families together to build community, problem solve, and celebrate special needs childhood within the Jewish community.
For more information about jBaby's Nora & Friends, email Deborah Cooper at DeborahCooper@juf.org.