Let’s get right to the heart of the matter on this communication thing. Let’s drill down to the basics and focus on what it is like to sit in my wheelchair.
I can’t talk; I can’t sign; I can’t write you a note; I can’t walk up to you and introduce myself; and my talking computer is impossible to carry around and extremely tiresome to use. To top it off I have seizures butting in on occasion, scaring people away. My sisters and brothers have similar impediments and some greater complications..
These are impediments which we accept gracefully. However, they are not the sum and substance of our existence. Odd as it may seem, they grant us a unique perspective.
Can you guess what it is? If not let me share a big secret with you. I spend my whole life LISTENING AND OBSERVING.
Let me ask you for a favor. Wipe away all your thoughts regarding my disabilities. Do you really think that behind these bright eyes there is no thought, no intentionality? Do you really think that in all the time I sit watching you and listening to you that I draw no conclusions about you or my world? Its ok if you answer “I never thought about it very much, if at all”. All I ask is that you give it more thought.
So let us strike up a deal. I promise I will never take offense when you stare my way if you promise me that you will never again assume that I or my brothers and sisters are not learning.
To help you along, let me share some of my knowledge. I know when I am happy or sad; I know when my body is comfortable or in discomfort. I know my medical condition quite well as I have overheard my parents and caregivers speak of it thousands of times. I know what’s funny. I go to school, a big one. I see hundreds of children running and jumping every day. I get the drift. Poppy will tell you that I try to walk every day. And if I could I would talk every day. I know all the moves and all the lines spoken in this play we call life. I rehearse them in my head all the time.
Inside I am normal 13 year old girl, buy me a pretty dress and do my hair and I will throw my shoulders back, and show you a big proud smile.
I like going out in public and when I show my glee and flap my hands and rock my chair at the mall, Poppy says ” go girl–let them know you’re here”. This is important to me, because it is me.
I have been fortunate that others have found HERE in me. My aunt was one of the rare ones. She used to babysit me and when all were concerned about my development she remarked that “all the lights are on in there”. She could see it in my BRIGHT EYES. And at that time Poppy did picture drills. He would hold pictures far apart, asking which is which, making me turn my head back and forth, back and forth; like I didn’t know which is which.
He used to take me to Starbucks and we met a jolly old retired man who told Poppy I was sneaky. He said I played shy not looking at people who looked at me; but when they were not looking they got a good eyeballing from me. In fact yesterday, we met a friend of Poppy’s at Starbucks and Poppy got to talking again and telling him stories about me and the man told Poppy that I rolled my eyes at one of his cock and bull stories. I did, but don’t tell him.
I know that we promised to interview others for this edition but it seemed to us that we needed to do a shout out for our HERE, and declare that we spend a lifetime listening, looking and LEARNING. We need more involvement in conversation, even if you have to read our lines. If you get to know us well enough you will learn our lines.
Next time we write we will have spoken to my bus driver, teachers and aides. Should I be so bold as to call them my references! Till then.
I hear you Haley. I went to school with your Poppy. My son went to school with Poppy’s son. Ken had a very rare nerve disorder for which there is no cure. He lost his battle five years ago but he always believed that someday there would be a cure. There was little known about his syndrome but our family is helping to spread awareness especially to the medical profession. Thank you for letting us get to know you.
I hear you loud and clear, Haley, always have! You sense of humor was apparent from the day I met you! ❤️
I’ve known your Poppy for many years and you are blessed having such a wonderful advocate. I see the lights are on right though that photo. And if some one is looking at you realize that they may very well be admiring your beautiful face!
THANKS FOR SHARING THIS! I will stay connected! Keep learning Haley!
Dear Haley, reading your message I have to admit that you are right. I guess I never did think much about what went on inside your head. I may have been too busy thinking that it was so sad you were unable to do so many things thus focusing on the negative , but never on the positive. Now I understand so much more. Like you may not be able to do some things but inside your head lives a bright , clever and very intelligent young girl. At times, I am sure you get a chuckle while you are looking at what is happening around you. Your world is different in many ways, but in many ways it is the same. To me It is an amazing thing to see a child assimilate so much simply by observation and thought. Your Poppy and I went to High School together. I really didn’t get to know him well back then. But I can honestly tell you this. He is one fine, brilliant man. He is also an amazing Poppy and Each of you have brought the best out of each other. you are each other’s greatest gifts.
Hugs to you Haley and to Poppy
Like Pattie, Haley, I also went to school with your Poppy. In fact I had quite the crush on him. Poppy’s son, Dan, went to school with my son, Ken. Ken died from complications from a little known nerve disorder called CRPS (Complex Regional Pain Syndrome) Your Poppy gave me some direction in how to educate the medical profession on this syndrome for which there is no cure. Today, five years later, I am please to say we are making great strides. We have a lot of work to do.
We hear you Haley. It is through yours and your Poppy’s persistence that you are educating us and I want to thank you.
Haley, like some of the other replies I also went to High School with your poppy. I didn’t really know him then because our class was so large. You are a very lucky girl that he is your Poppy and he will make sure you always keep a positive attitude. He will continue to do research on ways to make your life better and to let you know that you are very special.
Haley
I knew you when you were a wee mite. Your poppy and I discovered your sense of humor as you pretended to seize so you could hang out in my office.
Your intelligence is so becoming and so so so brilliant. Your sense of humor is rock solid and I can’t imagine the pranks you pull at 13.
Keep pushing through. Keep smiling. Keep being YOU!
You are a beautiful person, Haley.
You should write a book. It would be very interesting.
I know your Poppy from a few years ago when a group of people spent Sunday evenings listening to Frank sing beautiful music.
Haley,
It was wonderful to meet your with your Poppy a few weeks back. He loves you so much and he knows that you love him too. Thank you for sharing and for inspiring others to be open and to engage more with you and others who are really HERE and know what is going on but just can’t communicate it in the same way as most people do.
Haley
You are beautiful inside and out!
I remember when we sat outside together one summer and you would pull the band out of my hair when you thought I was not paying attention to you. Another time when you would roll across the floor over to me, so you could sit with me. I knew you were aware when I was around. You were shy about my taking your picture, but you aren’t anymore. Maybe Poppy should teach you to type.