Before my daughter was born, I carefully laid the groundwork for the support system everyone told me I would need as a new Mom, especially one living far from family.
I took to heart the advice that I would need a village to make it through the early years of navigating motherhood, and I wanted my child to be surrounded by love.
Yet, when my daughter was born with disabilities and complex medical needs, my village vanished, and I had to create a new one entirely.
I worked hard to meet other first-time moms
As soon as I found out I was pregnant, I joined online groups for women who were due around the same time as me. I signed up for prenatal yoga classes because I enjoyed the gentle stretches that eased my aches and pains. However, I kept going back because I enjoyed the company of other women who, like me, were pregnant for the first time. In my natural birth class, I constantly arranged (decaf) coffee dates and offered rides to other moms-to-be who wanted to look at cribs and bouncers at suburban big-box stores.
I loved navigating pregnancy with my newly found group of expecting mothers. Together, we navigated prenatal woes like the dreaded glucose test and celebrated joys, like settling on the perfect baby name.
I grew close to several of these women. We vowed to support each other by cooking meals for one another after delivery. We vowed to get together at least a couple of times a week during maternity leave. Someone suggested creating a babysitting co-op once our newborns were a few months old, and I was all in.
My daughter was born with disabilities and complex medical needs
After a picture-perfect pregnancy, everything changed. My daughter was born disabled and with complex medical needs. She spent weeks in the NICU while I pumped milk for her round-the-clock and slept on uncomfortable hospital fold-out chairs made out of vinyl that stuck to my skin.
Most days, I forgot to eat. I didn’t know whether my daughter would live or die, or what kind of life she would live if she ever saw the world outside her hospital room. When it came time to give my daughter a Hebrew name, I chose “Chaya,” meaning “life” or “to be strong.” I was willing her to pull through, but I seemed to be alone.
My daughter survived, but my village disappeared
My daughter survived those fraught few weeks. Eventually, she went home, albeit with monitors and oxygen tanks instead of teddy bears and soft blankets.
I reached out to the moms I had thought would be my support system, knowing I would be there for any one of them if they needed me. I discovered that the moms in the group that formed when we were pregnant had indeed been getting together as planned. They didn’t want to bother me, they said, so they hadn’t reached out. They assumed I needed my space, they told me, when what I really needed was their friendship and support.
I often wondered if I was their worst nightmare, a Mom with a sick and disabled baby who made problems with sleep regression seem like child’s play. Their reaction made sense. Throughout our pregnancies, all we ever heard was that if our babies were born healthy, everything else would be OK. Now that one of us had a baby that had not been born healthy, there was no road map for how to react or for what came next.
Eventually, I found my group. Without meaning for it to happen, all of my close friends have a child with a disability or complex medical needs. I am incredibly grateful that I was able to create a village, even if it’s not the one I originally planned.
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