Motherhood Unveiled: A Sibling Perspective on Special Needs
Growing up, I thought my mom had everything figured out, particularly since I was the third of four children and she had years of practice before I came along. She was relaxed and self-assured, unfazed by the everyday decisions that I worry about with my three children, such as which sport to choose or how to get them to be less picky eaters. My mom never sought to be perfect nor did she expect that of us, but she put motherhood first, and seemed naturally able to balance all that it entailed. Maybe that’s a trick of childhood. We think our parents have everything under control until long after it matters if that’s true.
While I view parenting as a scale in which success means doing more things right than wrong in each day, my mom excelled in multitasking and time management. Even when my younger brother Kevin was born, nearly seven years after me and two months before his due date, our life seemed under control. He was in the NICU for two months, and while that may sound traumatic, my mom had things on a schedule soon after she came home from the hospital, giant staples still in her abdomen from the emergency C-section. She went to visit Kevin after we left for school, and was home by the time our bus dropped us off. A couple times a week, we went with her to visit, singing along in the car to Stevie Wonder, Michael Jackson and Duran Duran, and enjoying McDonald’s Happy Meals, the only dining option at Children’s Hospital of Philadelphia in the ‘80s.
I had no sense for my mom’s initial fear of losing her newborn, her stress as medical complications arose, or her grief as Kevin’s physical development lagged and it became clear that she had a child with special needs. I remember him as a toddler playing with our baseball gloves and my brother Sam’s skateboards. We carried him in our arms and adored him, a smiling, laughing little boy who had a floating eye but was generally happy and thriving despite not yet walking or talking. How much brain damage did he suffer? What is a bleed on the brain? Would he catch up? Could the delays be from prematurity, not permanent damage? My mom didn’t spend much time trying to find answers to these questions. She moved forward, caring for the three of us and Kevin, getting us all to our doctor’s appointments, softball games and band practices on time.
It wasn’t until my younger brother had his first serious girlfriend that I slowly learned how hard it must have been for my mom at times, how much she must have worked to maintain her optimism while facing doubt and uncertainty. Kevin was in his mid-twenties when he met Carrie. She grew up just fifteen minutes away from us, although they never knew each other. They both have cerebral palsy from complications in utero and at birth and have struggled physically their whole lives. They also have fulfilling relationships, supportive families, successful careers, positive attitudes and compassion towards others. The apples do not fall far from the trees.
Not long after Kevin and Carrie first started dating, my mom and Carrie’s mom, Suzy, met for lunch. I remember vividly my mom telling me about this lunch because the story was so meaningful. They had lunch at a tea room in suburban Pennsylvania, not far from our hometowns. My mom described how she and Suzy compared birth stories, shared difficult memories and realized they had lived parallel lives only a few miles from one another, now connected by their children. Kevin and Carrie met through the internet, through the aptly-named dating site, eHarmony. The algorithm worked, recognizing the clear amount of overlap in Kevin and Carrie’s Venn diagram of survey answers, but even eHarmony could not have predicted filling in this space for their parents.
Carrie was Suzy’s first child and the doctors told her she would probably never walk, possibly not talk. Kevin was my mom’s fourth child, and the doctors were not sure he would survive. The causes were different, the outcomes divergent, but they shared an underlying experience of parenting through enormous unknowns. My mom rarely talked to us about the struggles of having a child with a disability, but we knew it was something that defined her. Kevin’s birth is a story we’ve heard as an example of life’s challenges, recounted as a series of chronological events. It is marked by neighbors coming in the middle of the night to clean blood from the bathroom floor before we woke for school, an emergency C-section, an incubator, kind nurses, Chicken McNuggets and three older kids who still needed attention, but no tears or fear. When I was pregnant and on bedrest with my first child, I learned that it was placenta previa that caused the hemorrhaging and Kevin’s premature birth. Even as the pieces of the stories came together, I don’t remember her ever telling us that she cried about Kevin; not until she had lunch with Suzy.
Maybe if Kevin was born in today’s world, my mom would have joined a support group, but that didn’t happen back then. She became a mother of a child with special needs, and that was not her decision, but she could decide how to move forward. She was grateful that her baby had survived and was healthy and capable in so many ways. He learned to walk at two years old, and once he started talking, was quite articulate with a knack for sarcasm. Kevin can recite most Seinfeld episodes and has made a career in technology. Carrie, while she uses forearm crutches to walk, is a gifted speaker, teacher and a healer, also with a clever sense of humor. She is a minister in a Presbyterian church. Both sets of parents concentrated on helping their children see what they could do rather than focusing on their disability.
As life unfolds, moments for reflection and connection have revealed themselves. Friends of mine have children with special needs, and I see the compassion in my mom’s eyes and offers to talk if they need it. Kevin and Carrie had their first child last January, a baby boy named Henry. They face the challenges of being disabled parents head on, with the support of parents who understand the ups and downs of this new adventure. We all say parenting is not easy; in Kevin and Carrie’s case, that is a vast understatement. Yet I watch them parent with all the joy, enthusiasm, confusion and exhaustion of new parents and I’m in awe of their ability.
My mother’s greatest lessons came not in what she told us, but in what she showed us. As my children grow up, loving their aunt and uncle with cerebral palsy and playing with their baby cousin, Henry, I am beginning to understand why my mom was so keenly aware of the big picture. She had been down the unpredictable journey of parenthood, and knew that we can control and shape certain things, but the things we can’t control are the ones that truly shape us.
Thank you for reading my story. I wrote it over a year ago and tried to get it published in a few places, and after getting very close but ultimately rejected, I put it away for a while. Last week, parents, children, teachers, coaches and lawmakers in my community came together to watch the documentary film Swim Team, and sharing an experience with families who are impacted by special needs parenting was the perfect reminder to revisit this piece. I am so glad I did.
For more about Swim Team, visit https://www.swimteamthefilm.com. Find out about bringing a screening to your community.