Sister Jessica

Growing up with a challenged sister I know first-hand what an inhospitable world this can be. On the flip side, I know all of the joy Jessie brings my family as well. She is a very healthy person otherwise and has the most wonderful sense of humor she just shines. When people have had misunderstandings and think she can’t communicate she used to look at me and just laugh mischievously. (she even gets my dad’s jokes) I really admire her courage and strength with all the adversity she has faced in her life. I am in awe with her determination to do the things and go the places she has experienced. She has been to Australia , New Zealand and London ( I think I'll go to Australia). She's going to Nassau this Spring and before losing any time I'm sure she'll be planning a trip to Alaska. Her disability is just part of who she is.

I can remember in our childhood going out to restaurants for a family dinner, servers would ask us whether he could drink and what she wanted instead of directing the question to her. First, I would get so mad and correct them. She always ordered a coke with a flexible straw. Also, many restaurants have steps or restrooms on a lower level...not many restaurants have elevators. We always had to call ahead to make sure there was some level of accessibility. This created an atmosphere that caused us to always think and plan ahead. I think I can blame my over-compulsive planning problem on this aspect of my childhood. I had a daytimer when I was like 5 !?#

Occasionally I freak out and have to reorganize my closets, the kitchen, LJ's medical records. (see what I'm talking about with the 3-ring binders with tabs corresponding to each of his specialists? and below is LJ's flow sheet)

I've even created a handy medical "business" card about Lewis to hand to the ER staff or other new service providers.

Jessie is so well-adjusted and I think it is because my parents did the best job to always include her and treat her on an equal basis as the rest of us. Jessie was mainstreamed in the public schools, she went to the prom, she had frequent trips to NYC to shop at Bloomies and see broadway plays. Despite all of Jessie’s challenges, I used to get jealous of her and all the attention I perceived her getting. (trip to NYC for me please??) My brothers and I sometimes even fought with her-she can be stubborn and moody just like the best of us. We also had competitions. For example we had wheelchair races down the driveway. Once Jessie got so mad at my parents for nagging her about something she rolled to her room and slammed the door shut. Other times she tried to run them over with her motorized wheelchair...but they were too fast! My parents have advocated for her beyond belief. So much so that she lives independently in a townhome that she shares with her aids. And thanks to our mom’s incredible phone/letter campaign she has weaved her way through the bureaucratic mess and gotten Jessie many services !! Jes is a mad hook-rugger. And by mad I mean off the hook, no pun intended. She thoroughly enjoys her manicures, often venturing for the naviest blue hues or royal purple shade. She is like all of us. In college, like some of us who didn't stay away from alcohol, she would sometimes get tipsy and she had some dui problems- no more wuwu’s, watch out walls! All these are reminders of times we've laughed so hard tears streamed from our faces.

This is what it is like to have a glimpse at disability. I love her. She is a person. A daughter. A niece. An Aunt. A friend. A teacher. My sister. Thank you for making me a more patient, loving, compassionate human being. Without you- what I'm going through- would be so much harder. I have learned how to live.