Home   April 2017: THE SIBLINK | Sibling Scribblings

April 2017: THE SIBLINK | Sibling Scribblings

SIBLING SCRIBBLINGS

 

Everything I Need to Know… I Learned from My Brother 
By: Lisa Cordell, sister of JFGH resident Jason

Many years ago, as a middle school class assignment, I wrote about what it was like having a sibling with disabilities. Although I am not one to keep things from my childhood, I have kept a copy for more than thirty years, and in recently re-reading it, I was struck by how much has changed and yet how much has stayed the same. What struck me most is everything that I need to know as an adult (and parent), I learned from having a sibling with disabilities.

For a while, I was an only child and grandchild — the center of my parents’ and grandparents’ universe. In 1975, Jason was born, and by all accounts, was a healthy baby. While incredibly excited to have a sibling, I, like all other first-born children, now had to share my parents’ and grandparents’ love and attention with my brother. An adjustment for any child, my existence would be forever altered a short time later.

Lisa Cordell and Jason Chandler

On the day of my brother’s bris (but before the actual ceremony), Jason suffered a brain hemorrhage, for reasons we still don’t know today, that left him with extensive brain damage. Doctors felt Jason would progress very little. In terms of the most basic skills, their diagnosis was correct – even today, at 41 years old, he cannot walk, talk or do anything for himself. The doctors, with far less understanding then of how the brain works, also could not have been more wrong about what he would be able to do. Jason knows how to charm (and get what he needs from) anyone he encounters; flirt with an attractive woman (and he is discerning); communicate his displeasure when not receiving the amount of attention he feels he should receive; and shower those of us he loves with affection.

As I wrote in that article so many years ago, while Jason changed my family’s life forever in many ways, I can honestly say that the positive things that come from having him in my life far outweigh the challenges his disabilities pose. As I noted back then, and still is true today, Jason’s reason for being is to offer pure, unconditional love and joy, as well as inspire those around him to have the strength to keep going even during the most difficult and painful of times. I have learned to have strength in the face of adversity — to wake up each day as if the challenges from the day before are forgotten; to speak up for those who cannot do so for themselves; to persevere even when repeatedly being told “no,” “it won’t work,” and/or “why bother;” to navigate sometimes endlessly challenging and frustrating situations using a calm voice and even keel when all I reallywant to do is scream; and to work towards making change rather than feeling sorry for myself and waiting (perhaps for an eternity) for someone else to fix something that is not working.

Lisa Cordell and Jason Chandler

Ironically, life with Jason prepared me for life with my own children. Growing up with Jason, I learned compassion, flexibility, patience and understanding, which I must exercise daily with my daughter, Chandler, who also has special needs. Raised in Montgomery County, Maryland, my parents were among the first to fight for inclusion. Watching them work with the school system at a time when inclusion was just starting to happen to make sure Jason reached his fullest potential, I learned how to advocate so that Chandler gets what she needs to reach hers.
I must share with you a powerful example of the benefit of an inclusive world. Some time ago, there was a student at my brother’s high school — Walt Whitman — who volunteered in his class but, much more importantly, included Jason as part of her world – hanging with him at prom and even inviting him to her graduation party. After losing touch for many years, and unaware that she went on to pursue a career helping those with disabilities, that person, Rachael Wright, now works with Jason as his JFGH case worker. The positive experiences Rachael had in high school with Jason and his classmates seem to have inspired her career choice, and my family is so fortunate to have the happy coincidence of getting assigned to Rachael.
Being a sibling of someone with disabilities also helps me every day in raising my other daughter, Samara, who does not have special needs per se.  I say “per se,” because I often feel that “siblings of those with special needs also have special needs.” We belong to a rarified club that required us to grow up faster and have more maturity than our peers and often take on a lifelong commitment to helping our siblings once our parents can no longer do so. I have a unique bond with Samara, inthat we both know the mixed emotions and often difficult realities that can come with living with someone who has special needs – sometimes feeling overshadowed by our siblings’ needs, the discomfort that can come from living with someone who does not meet the expectations of a frequently cruel society, the patience and understanding that is needed to get through the days, to name a few.
But if not for growing up with Jason and watching my parents work tirelessly to make sure he has a full and rich life, I likely would not feel so driven to create change. Because of their example of having sat on boards to help steer the direction of disability organizations our siblings participate in today, I have also been active in improving the lives of individuals with special needs and their families – from serving on the steering committee for my college-wide, 24-hour fundraiser for Special Olympics, chairing the Gala for my daughter’s special needs school to co-founding the Inclusion and Accessibility Committee at my synagogue, Congregation B’nai Tzedek.

While I would be lying if I were to suggest I did not wish that Jason could have been spared his issues, I am also so unbelievably grateful that being his sibling prepared me for adulthood and living a full and positive life. To Jason, I love you and cherish my every day with you.  

Chandler family

If you have a sibling story you’d like to share, please email bshapiro@jfgh.org.
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