Editor’s Note: It’s Smile Week – a week where Johnson & Johnson honors and celebrates the life-changing work that our partner, Operation Smile, does for people around the world. Today, mom, philanthropist and Operation Smile Founder’s Circle Award Winner Barbara Majeski shares the gift she received being a part of a special needs family.
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”—which in the 1990’s would be diagnosed as Fragile X syndrome-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. I vowed to protect him forever.
Special education programs were in their infancy back then. Families were left to chart their own course. We did not have a road map 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.
- Having a perfectly 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, with reckless abandon and no warning. We would never see it coming. There are several establishments in the state of New Jersey that never saw us twice, but could remember the once. When this happened during family outings, my father would give us “the look” to clean up and go to the car, while he picked up the pieces. Dad would joke 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.
- 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 everyday needs to care for their family, and it becomes hard to also advocate for special needs children. Every special needs family also depends upon the help of their community. It’s easier to look away, but to help is our moral imperative.
- When you give unconditionally, what you get in return is immeasurable. During our childhood, Steven was often misunderstood. His words were often muddled and incoherent, but I had no problem understanding him. I would step in to help others understand what he needed and wanted.
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. This inner strength 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, it enables me to live my life with purpose, passion and courage. This gift is immeasurable.
Today, I speak all across the United States about the importance of giving back and supporting philanthropies that fund programs for children and adults in need. Recently, I launched a fundraising initiative for Operation Smile, a global humanitarian organization dedicated to providing life changing surgeries to repair cleft lips and palates. With the support of hundreds of sales offices we have successfully raised $600,000, with the goal of $1,000,000 dollars by the end of the summer. I believe my work to advocate for local and global philanthropies is my way honoring Steven for the blessing of being his sister.
I hope my story will give light and hope to families raising typical and special needs children under one roof.
Are you inspired to help too? We’re excited to give you two easy ways to support Operation Smile by taking actions you do every day. With the free Johnson & Johnson Donate a Photo app, you can trigger a $1 donation to Operation Smile every time you share a photo through the app.** Get it in the app store for your iOS or Android device, or visit www.donateaphoto.com for more information.
You can also help raise funds for Operation Smile just by running, biking or walking. Check out Charity Miles in the app store or visit www.charitymiles.org to learn more.
*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.
**Johnson & Johnson has curated a list of trusted causes, and you can donate a photo to one cause, once a day. Each cause will appear in the app until it reaches its goal, or the donation period ends. If the goal isn’t reached, the cause will still get a minimum donation.
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. Learn more at BarbaraMajeski.com.