By Vicki Rubin
Our daughter Jessica is 36 and does not speak. She needs assistance in all daily life skills. There are several things she can do independently such as moving her wheelchair, but only if she feels like it. This translates into caretakers and family mostly pushing Queen Jess from place to place.
Jessica also loves to listen to music and she will hold her iPhone to her ear (kind of like an old-school boombox) without dropping or throwing the device.
Anyone who knows Jessica knows that she will throw spoons, forks, cups and other items that don’t have the same lure as music because she knows that others will assist her with eating and drinking – but will somebody hold a phone to her ear for extended periods? Our Jess is quite savvy.
Jessica was born with a deletion on her first chromosome, which causes significant disability. Many people who meet us or Jess for the first time often have the “I’m so sorry” look on their face. Yes, we could go down that road and think of all the experiences Jess will never have, all the opportunities she will miss.
Jess will never get married or have a child but there are many folks out there who by circumstance or choice remain unmarried or without children. Jess will never live independently and will always have people caring for her every need. I know sometimes that is a tempting alternative after a hard day or week but in the long run we prefer independence.
On a bright note (pun intended), Jessica shows her joy by humming one of her numerous tunes — everyone who knows Jess also knows that she is constantly singing familiar melodies. Jessica also gives, if she knows you, the most spectacular greetings — I always say, “everyone should have the experience of another person showing pure joy because you are there.” Jess has a strong love for family and friends and she is blessed with both.
My husband, Mitch, and I have many dreams for our three children, who are now well into adulthood. The ability to experience and appreciate joy and happiness was always in our top five. Jess has not only accomplished that goal, she teaches others. Let me explain.
On a recent day I was talking to the mom of one of Jessica’s housemates. I will call her Maggie (her real name is Jessica, which can get quite confusing). Maggie said to her mother that she would like to be happy like Jessica. Maggie’s mom said that being happy was a choice and that Maggie can choose to feel happy.
That night, Maggie and her mom went out to dinner and Maggie started humming a familiar tune. Mom asked Maggie what she was doing, and the reply was that she was trying to feel happiness like Jess.
This story resonates with my husband and I on so many levels. I guess we never thought that Jess could be a role model for others; that was a huge mistake of ours.
This anecdote highlights the fact that everyone has something to learn and everyone can be a teacher. Don’t sell yourself or others short with assumptions; instead, look within yourself and ask what you can share with others. Don’t forget to learn from all of those around you, regardless of their ability.
So, when I think of achieving goals in life, I know that Jess has reached a goal that so many strive for. She enjoys herself, is happy and unencumbered enough to demonstrate that emotion freely.
Vicki Rubin, of East Amherst, is proud that her daughter Jess is a role model for others.