THE IMMEASURABLE GIFT
Growing up we were known as the " Schwartz family of twins". I was the oldest in the first set of two sets of twins. My Mom is a triplet. Multiples run in our genetics, as does the neurological disorder, Fragile X*.
In 1979 my younger brother, Steven, suffered from multiple seizures and excessively high fevers. After a long stay at the Children’s Hospital of Philadelphia my parents were informed that Steven was “neurologically impaired” and they were sent home with a pamphlet on mental retardation. Later that week my parents sat down with me and my twin brother, Ben, to
tell us that Steven would not develop like his twin, Michael, and he would never be able to talk. We were asked to be kind, to be patient, and to be protective. His stay at the hospital scared me and I was grateful to have him home. I vowed to protect him forever.
In the 1970’s & 1980’s, special education programs were beginning to evolve. Resources and education for the families, siblings, and caretakers were very limited. Families were
left to chart their own course. We did not have a road map to know how to deal with Steven’s erratic behavior, lack of motor skills, and obsessive traits, but we figured out ways to cope. We like to say, “We Schwartz’d it” meaning, we winged it with love, patience, and a sense of humor.
Here are a few lessons I learned along the way.
1. The Imperfect Childhood is Perfect The wheels could come off at anytime with Steven and we could never be prepared enough. For one, Steven had a terrible stomach. He could “toss his cookies” at anytime, anywhere, and with reckless abandon. We would never see it coming. There are several establishments in the state of NJ that never saw us twice, but could remember the once. My father would give us “the look” to clean up and go to the car, while he picked up the pieces. Dad would lead us with a series of jokes as we headed home for a dinner of cereal and before we could make it home we were in hysterics. We couldn’t control when the crazy happened, but we could control how we handled the crazy.
2. We all need to look out for the most vulnerable members of our community. Never assume someone else is going to do it. My Dad said it best when my parents were struggling to find adequate services for Steven, “We are in the forest and we can’t see through the trees”. Parents are often focused on the, “day to day” basic needs to care for their family. People
often think it is up to the immediate caregivers or parents to do the advocating for special needs children. Keeping up with the changes in policies and political agendas can be cumbersome to any family and we also need the help of the community. It’s easier to look away, but to look to help is our moral imperative.
3. When you give unconditionally what you get in return is immeasurable. While growing up when I felt Steven was being misunderstood I would take over and tell everyone what he needed and wanted. His words were often muddled and incoherent, but I had no problem
understanding him. I always thought I was helping Steven, but in truth he was helping me. He gave me the skills at an early age to be able to speak up and to speak out. If an adult intimidated me, all I had to do was think of Steven and I would immediately find the words I needed because I knew he was counting on me. I learned how to articulate myself and to use my voice. I believe Steven gave me superpowers. When I advocate for children and adults with special needs, I draw from a well of strength that is endless. My will, determination, and strength knows no bounds. I’m not big in stature, but in spirit I have the will of a seven foot NFL linebacker. Steven has allowed me to tap into an inner strength that allows me to move mountains. I’m always thinking, this is for Steven and I am being a voice for those in need, but in the process I am living my life with purpose, passion and courage. This gift is immeasurable.
Today, I speak on stages across the US about the importance of giving back and supporting philanthropies which fund programs for children and adults with disabilities. I ask people to not look away, but to look to serve in their community and across the globe.
I hope my story will give light and hope to families raising typical and special needs children under one roof.
*Fragile x is a genetically inherited neurological disorder that was discovered in the 1990’s. It is often is accompanied by common physical characteristics such as an elongated face and large or protruding ears. Behavioral characteristics, hand flapping, limited eye contact, and impaired social development are also very common.
Barbara Majeski of Princeton, NJ, is a wife, mother, entrepreneur and a dedicated philanthropist. Growing up with a brother with special needs, Barbara has always known the importance of speaking for those who could not speak for themselves. She has since become an outspoken advocate and champion for children and adults with disabilities. She was recently awarded the “Founders Circle Award” from Operation Smile at the annual NY Smile Event.