Helpful advice for the journey ahead…
I had the pleasure of reading an amazing blog last week. As I was perusing my Facebook newsfeed, a post titled Being Retarded had been “shared” on a girlfriend’s page. The title alone was shocking. Having a developmentally disabled aunt, the word “retarded” carries a different connotation with me and my family than it does with individuals who have no experience with a truly “retarded” individual. So I clicked the link; my curiosity had me and I needed to know where the author was going with this title.
After a quick read and a few tears, it was easy to determine that the author of this post knew exactly where she was going with this post…and nailed it! Her name is Phoebe Holmes and she is the mother of four children, one of whom is developmentally disabled. The post discusses what it does not mean to be retarded, and very bluntly names instances in which our society’s limited vocabulary allows for misuse of the word. Then Phoebe moves into what it truly means to be retarded. Some of my favorite lines:
But what does it mean to be retarded? Well, I know what it doesn’t mean.
It doesn’t mean not being able to choose something for lunch despite 100 choices in front of you.
It doesn’t mean not being able to find your car keys.
It’s not something to describe yourself as when you’ve spilled your coffee, or tripped on a crack in the sidewalk.
In our household, being retarded means something different.
It means not being able to fully care for yourself.
It means not understanding what the doctor is going to do to you.
It means not being able to explain what hurts when something hurts.
It means not being able to ride a two wheeler. Or read. Or ever be able to live on your own.
The line that stuck out the most to me was “It doesn’t mean saying the wrong thing to a person.” As I previously stated, my aunt Kate (dad’s older sister) is developmentally disabled. She is capable of many things, unfortunately, living on her own and advanced tasks such as driving are not among them. However, someone many consider a handicapped or a disabled individual, I see as an enlightened soul. My aunt, who is unable to understand many of the “complicated” ways of adult life, is content and happy. She smiles and is always happy to see her nieces and nephews, watch the fire truck drive by and enjoy a matinée at the local movie theatre with Grandma. And more importantly, she feels emotions on a very basic level; like small children, who have not been corrupted or jaded by “life.”
I bring this up because there is one instance in my life, one communication between my brother, dad, Kate and I that I will never forget. When it was certain that my mom was going to be leaving this realm soon, we called the entire family and invited them to Chico to say their final goodbyes. Kate was not able to make it to Chico, but after Mom passed, she called us to check in. In a world where everyone else was not in control of their emotions, unable to grasp the situation or communicate properly, this “simple” soul was a calm eye in this violent storm. Her words were simple, sincere, honest and full of unconditional love.
It is important for me to remember those times, particularly as we get closer to Mom’s passing anniversary. I find myself becoming more manic as we move closer to the end of January. I wake up every morning, look at the calendar and remember what occurred this day, three years age; admit to ER, Mom’s going to be fine, Mom’s not going to be fine, Mom knows who we are, Mom doesn’t know who we are, call Hospice…you know how the rest of this story ends.
Thank you, Aunt Kate, for your ever-clear understanding of life and your unconditional love.