This is a reading list Lu made up using her Tobii the other day. I have been working at making pages on the Tobii of the covers of all of the books she owns (which is many) so she could choose what she wants me to read. We then read the paper version of the books because they are not in her Tobii (yet!). I have dreamed of this being a possibility for all of her life. Right now I have 7 pages of books with 20 books on each page and I asked Lu to go through and choose two from each page that she wants to read at some point. These were her choices. She almost always chooses the Avengers, and the C Book, and How The Grinch Stole Christmas. I never knew those were some of her favorite books, but I was always just dying to know!
"It is the position of the American Speech-Language-Hearing Association (ASHA) that 'communication is the essence of human life and that all people have the right to communicate to the fullest extent possible. No individuals should be denied this right, irrespective of the type and/or severity of communication, linguistic, social, cognitive, motor, sensory, perceptual, and/or other disability(ies) they may present.' "
Linda Burkhart used the above quote at the end of the PODD training we went to last December. It has stayed in my brain ever since, but most especially the little part that says, "Communication is the essence of human life." I even used the quote in one of the appeal letters I sent to the insurance company as I pleaded for them to approve the Tobii. When we learned the PODD a year ago, that was the beginning of our glimpse into what Lu was thinking and feeling. When we got the Tobii a few months ago, it made me realize that with the ability to relay her thoughts so quickly and efficiently, people will see her as a real person. Because, being able to communicate truly is the essence of human life. I believe it is a sad, but true fact that without the ability to communicate, people are seen as "less than", even if they have all kinds of thoughts and feelings swirling around inside of them.
Around the same time that we got the Tobii, maybe even a little bit before, I looked at Lucy one day and had a startling, but exciting realization. I looked at her and thought, "How could someone not fall in love with her some day? Why couldn't she get married and have a life with someone?" Then I read a little about Stephen Hawking as a comparison for how I think that could be a possibility... When he married his first wife, the ALS was just beginning to be an issue for him. He had recently received the diagnosis and she still married him. She took care of him a lot throughout their marriage, but they also always had nurses, and assistants that did a lot of the physical caring for him. It was just their way of life to have extra people with them to tend to Stephen's needs. Him and his first wife eventually divorced after many years together and after having three children. He remarried one of his nurses. He remarried even though at this point ALS had completely taken over his body and had done so years ago. BUT, just like Lu, his mind remains in tact. A woman fell in love with HIM and married him, in spite of the fact that he has no control over his body, in spite of the fact that he communicates using a speech generating device, and in spite of the fact that all of his very serious medical conditions require round the clock care by her and others. I think Lu is so incredibly awesome and amazing that I believe she too will meet someone someday who also will be able to look past Rett Syndrome and fall in love with HER.
While out to eat at Red Lobster on Saturday night with Chad's dad and stepmom, Lucy kept saying, "panties" with her Tobii. It was funny, but it also gave us the opportunity to talk about when and where it is and is not ok to talk about bathroom things. That's what you do with children; you teach them manners and about topics that are better left for discussion at home, in private. And now Chad and I get to do that too. I wish every person on earth that cannot speak on their own was just automatically given a Tobii. There are many families of girls with Rett Syndrome that have no communication system for their daughters, let alone a Tobii or some other kind of speech generating device. While I am so grateful that Lu is able to have her Tobii, it also breaks my heart that there are so many people that do not have one and have not been given the opportunity to communicate.
This morning Lu and I talked a little bit about what she might be when she grows up...because she will be SOMETHING! With or without a cure, she will do something wonderful, and maybe be someone's wonderful wife. And contribute to society just like others do. I just know it.
"Obviously, because of my disability, I need assistance. But I have always tried to overcome the limitations of my condition and lead as full a life as possible. I have traveled the world, from the Antarctic to zero gravity."
"All my adult life people have been helping me."
"Among physicists, I'm respected I hope."