This seems like a completely random subject for a post, but part of the beauty of having your own blog is that you can satisfy random thoughts such as this. Who I am specifically targeting with this question, “How do you do it?” is parents of children with disabilities. I was approached by my boss this week who asked me to write an article for Exceptional Parent magazine on either a caregiver or a parent with a child who has special needs. I jumped on the opportunity and only had one person in mind, Tara. I contacted Tara right away, hoping she would be interested in helping out a friend (me) write this article. With Tara being Tara, she gladly accepted with an exuberant, “Absolutely”! To give you a little background, Tara is my best friend from childhood. She lives in Rhode Island with her beautiful family and their house is typically the first stop I make when getting off the plane in Providence. Tara, and her wonderful husband David, have 5 children; Sam, Ben, Meg, Grace and Lily. I’ve discussed them in previous posts and will talk about them in future posts only because their story is so many things; inspirational, heart wrenching, personal, sad and motivational.
Grace, Tara’s 4th child, has Rett Syndrome. It, like any developmental disorder, is devestating not only to the person directly affected, but to anyone around the person with the disability. What makes this situation with Tara and Grace so unique to me is that I’ve never been so personally connected to the product that I market and sell. Tara and David will eventually need a wheelchair accessible van to be able to safely and conveniently transport Grace and the rest of the family. I meet many users of our wheelchair vans but it’s always “after”. By “after” I mean, after their injury, disease or disability no longer allows them to be transported in a conventional manor. I didn’t know these people before and therefore didn’t know what type of life they led, other than the stories they share with me.
The opposite is true with Grace. I’ve known Grace since she was a baby, when she was just like any other baby. I knew her when she was one Tara and David’s clan; helping Sam, Ben and Meg get into shinanigans. I often wonder if Sam, Ben and Meg remember Grace before she got sick. I wonder if they remember what it was like to not watch over her with such intensity, scrutiny and care. Visits to Tara and David’s back then were so different, not bad, just different. Things are not the same when you have a special needs child; they can’t be. When Grace was diagnosed with Rett Syndrome 3 years ago, everything changed, for everyone who knew Tara and David. I remember instantly thinking about VMI’s wheelchair vans, since Grace will eventually loose her mobility. I never once thought I would be selling my best friend one of our vans.
Being 2500 miles away from Rhode Island, and Tara, I only know what is going on by brief phone conversations and through Tara’s updates via email. She is diligent about keeping everyone in her large circle updated on Grace, and sends out at least 3 emails each month. The last email came in this week and she started by saying, “Grace is doing her best to fight this great fight. She’s extremely wobbly on her feet, one of her ankles is caving in, her hands, arms, head are all tremoring and she looks a bit “Katherine Hepburn” these days. She’s tired. Her life is hard every minute.
Although her body lacks the ability to regulate things that we all do automatically without thought or effort like swallow, breath, sleep, walk, talk, etc., she does do one thing with perfection and independently and that is LOVE. She loves indiscriminately and without limits. To me, that is something we all fail at. Grace loves you no matter what size, smell, color, or disability you have (inside or out). She has mastered or actually was born with this ability that very few people in this world ever achieve.”
Tara’s words are the inspiration to this post. I wonder every day how she does it. I am a single woman, with no children, and I wonder sometimes how I make it through a day, pathetic, isn’t it? I want to focus on this one simple question when I “interview” Tara for the Exceptional Parent article. I will share that article with you when it is complete.