Tears of joy quickly turned to tears of question and anguish.
By ARI HAROWUn enfant atteint du syndrome de Down(photo credit: PIXABAY)
This week my family and I will be celebrating my sister Beth’s 46th birthday. Born one day short of a year after her, Beth and I have always had a special bond. It is not always a fun proposition for a young boy to share his birthday with anyone, let alone his big sister, but in our case it’s different.Beth never stole the limelight, did not have annoying friends that picked on me, and always had a big smile on her face. Beth loved those shared parties and over the years would remind me of those wonderful moments. What was somewhat lost on me as a child, became clear as day as I got older: My sister Beth was special.Upon admission to Cedars of Lebanon Hospital in Los Angeles, California, the excitement and anxiety surrounding the birth of a first child was palpable. As the baby let out her first cry, it was clear to my parents that life would never be the same. Tears of joy quickly turned to tears of question and anguish. It was obvious to the nurses and doctors – Beth had Down Syndrome.The shock and fear were overwhelming, the challenge enormous and the stakes unbearable.My young parents did not know what to do or why this had happened. The doctors and social workers encouraged my parents to “give up” the child and put her in a home for the mentally ill, something commonplace to this day. There was no room in society for a child with Down Syndrome.The first brave decision my parents made was Beth’s naming, giving her the Hebrew name Bracha – Blessing; a name she would surely live up to. Weeks went by and pressure mounted on my parents to keep her in an institution. The choice made would change their lives and that of future children. My parents opposed the “professionals” and took Beth home. They decided to fight for Beth and give her the best life possible.Beth was slow to develop, both physically and mentally, but as I entered the picture a year later and my brother Josh a year after that, Beth started to catch up. My mother spent endless hours with Beth taking her to doctors and therapists, and became an active advocate for Down Syndrome care. My parents met this challenge face on; a lesson I internalized and that would help me in dealing with my own challenges later in life.As we entered elementary school, my parents decided that there was no reason Beth could not be mainstreamed. Never taking no for an answer, my parents pushed our Jewish Day school and Beth became a regular student. Amazingly, Beth learned to read, write and speak in both English and Hebrew. Beth was truly special. It was not always easy for her being the only “different” one in her class, but Beth’s pure soul, deep-seated happiness and perpetual smile ultimately won everyone over.Beth was 13 when we made Aliya and my parents attempted to continue the mainstream education.Unfortunately, the system and the students were not ready for this, and Beth ultimately found her new home in Ohel Sarah, a special school in Bnei Brak. Now referred to as Brachy, she excelled in this new program. Schooled with children having Down Syndrome as well as other mental disabilities, Brachy shined. She especially loved computers and was asked to join the ranks of the teachers, teaching younger children a regular computer class! Coming home for weekends and holidays, Brachy would independently take the bus and traveled the country as if she owned it! She knew every bus line out of Bnei Brak and how and when to get where she wanted. Her visits were always full of laughter and smiles, and as our family grew, Brachy fell in love with her many nieces and nephews.The last couple of years we started to notice a change. She would miss a bus here and forget a name there. Her computer classes became harder for her to teach, and she would on occasion forget the day of the week. One year ago it hit me that something was truly off. Beth would always call me for my birthday, expecting me to return the favor the next day. When the phone call never came, I figured it must have slipped her mind. I called her the next day and wished her a happy birthday. She was her giddy self at receiving the call, but when asked about my birthday she seemed confused. I had a feeling something was wrong.Six months ago we were called in to a meeting with Beth’s school. My parents, my siblings and I made our way to Bnei Brak and met with a room of experts. “Brachy has early onset Alzheimer’s” we were told. The room started spinning; we were devastated. Although more common in Down Syndrome, this was not supposed to be happening to our sister! I could not bear the thought of what that meant, and for the days and nights ahead the flow of tears did not subside.Just a few weeks ago, Beth underwent another round of testing. We were told that the Alzheimer’s is progressing rapidly and that it would not be long before she will be in need of constant care.It is with this deterioration in mind that I decided to share Beth’s story.As I reflect on my childhood and my upbringing, it was Beth, and my parents in raising Beth, that taught me life’s most important lessons.They taught me that adversity may not be fun, but we can and must overcome. They taught me that love and devotion overcome hardship.And Beth, more than anyone, taught me that true happiness is the ability to embrace every moment.I spent a lifetime learning about the angels in our midst that we call Down Syndrome and pray that as a society we recognize and embrace this gift.Tragically I have now learned about Alzheimer’s, and support the brilliant Israeli researchers in their efforts to find a cure to this horrific disease.Brachy has been a tremendous blessing to us as a family and to all that know her. I hope and pray that next June we will celebrate together.