My Sister’s Eulogy

 

I was seven year's old when my sister Janet was born in the summer of 1974. Even at that young age I had this impression of sadness in my family.  I didn't really understand it fully.  To me, Janet was tiny, quiet and adorable with a little peak of black hair pointing up like a cupie doll. She had these slanted almond shaped eyes that made her look sleepy and yet very sweet.  My mom explained to me that she would be a different kind of sister. She would be very slow to learn and develop her whole life.  Janet had a form of mental retardation known as Down's Syndrome. Basically she had one extra chromosome then the rest of us.  She was also born with other health problems such as a hole in her heart.  The doctor told my mother that she should be given up and placed in an institution because it would be difficult to care for her.  With little information and resources, my parents decided to keep her anyway and give her the best life they could. 

At three months old Janet was enrolled at the University of Miami Debbie School at the Mailman Center for Child Development.  My mom worked at the Mailman Center as well. During this time, she started a support group called PODS (Parents of Downs Syndrome) where she held monthly meetings to help parents navigate the challenges of special needs kids. Over the years, my mom estimates 1,500 families were served by PODS.  Later my mom came to work at the Association for Retarded Citizens where she worked in administration, information and referral and guardianship until she retired a few years ago. Her life's work was helping children like Janet and their parents.

When my sister was three, she enrolled at the Marian Center in Opa Locka where they taught her basic skills, socialization, art, music and even partook in Christmas plays.  It was around this time that my sister's mischievous personality set in.  Marian Center was run by nuns and one of the things Janet liked to do was run and be chased.  The nuns, in their habits, would chase her all over the school until they caught her and Janet would just laugh.  She was so quick on her feet, a virtual whirlwind that I actually nicknamed her the Tasmanian devil!  With a wry smile and twinkling eyes it was hard to get mad at her.  She had so much fun being naughty!  One time I remember her taking a marker and decorating our nice yellow couch.  When my dad or her caretakers took her shopping she would dart under the racks or slip away to the hide in the lady's room. In her adult years she was no longer fast but she became sneaky!  When no one was around she could do a quick raid of the fridge and secretly eat a gallon of ice cream or a Hitachi full of rice!  My mom, finding the empty pot on the floor, would call me so upset but I would just laugh.  Janet's joy in life was food. She also liked to embarrass my parents by belching quite loudly in public places. They would reprimand her of course, but she would just laugh in her knowing way and let out another big burp.

After the age of 8, Janet left Marian Center and attended Olympia Heights Elementary and then Rivera Junior High.  Each had Special Ed programs.  She graduated high school and transferred to RTK Activity Center for adults where she would work on an assembly line.  After three years, Janet retired and was happiest at home.  One of the things that made this possible was a program called CDC through the Agency of Persons with Disabilities (APD).  My mom was one of the trailblazers of this idea years prior.  As these children became adults, parents were faced with the difficulty of
working and having to care for their disabled adult kids. They did not like the option of placing them in a group home or institution. My mom and two other parents went to Tallahassee to convince legislators that it would be more beneficial and cost effective for parents to be paid to stay home and care for them. They heard their presentation and told them it was a good idea but didn't pass it. The next year she returned more prepared. She brought developmentally disabled adults with her to speak for themselves and a movie on the conditions at one of the state run institutions.  This time they were convinced and CDC began slowly as a pilot program in Miami.  When President Bush, Sr. championed the American Disabilities Act in 1990, it paved the way for more funding for persons with intellectual and developmental disabilities. CDC began to grow all over the state and the nation. Eventually Janet and my parents came to benefit from that work and she was able to remain at home under their care and that of some wonderful caretakers.  I want to acknowledge some of them now. Cecilia, Maybi, Aidil, Laura, and others.  Thank you for all that you did for my parents and my sister.  I also want to thank Janet’s Case Worker Mercedes Franco.  Her help with the CDC program was invaluable and she always went above and beyond to help my mom.   Mercedes, we have been extremely blessed to have you in our lives!

So what will I remember about my sister?  She had a great sense of humor and was tender hearted. She adored books and could be easy to bribe with hamburgers!  She loved music, Legos, swimming and puzzles. She adored my father and would probably say he was her best friend and him likewise.  She could be stubborn at times.  When she was young she had a scheduled photo shoot with Miami Vice actor Edward James Olmos. For some reason, her nerves got the best of her and it took me hours to get Janet out of our car and for her to calm down.  When she did,we had a wonderful time taking pictures and he was very gracious. Janet had her share of health problems and complexities that made life challenging.  It was true what the doctor said that it would not be easy but my parents loved and adored her and wouldn't have traded raising her for anything. In my youth, Janet and I spent a lot of time together because my mom worked two jobs and my dad worked nights and weekends.  In a lot of ways I felt like her second mom. It was fitting that I became her CDC representative in place of my father.  The day she passed I was going to take a guardianship course so I could protect her interests if something happened to my mom.  I last saw her a week ago.  She walked out to greet me and gave me one of those big joyful grins and stroked my arm.    That is how I will always remember her.  As she aged, slowed down and her hair turned grey, she still had that sparkle in her eyes but even more so a gentleness that was so precious.  I was able to capture that in the picture of her and my father on the board. She mourned him to the end always asking where he was. It makes me happy to think of them together again. And this makes me wonder how she will be when we do reunite in glory. Her identity will no longer be a child of disability with health issues. It will be exciting to see her true self for the first time.  My sister never could speak or communicate well so I want her to tell me some great stories of what it was like to navigate this world with her limitations. Thank you, Janet, for all the laughs and tender moments. Life was more colorful with you in it and for that we were blessed. Until we meet again.