“I did it Grandma! I got a 100% on my spelling test today!” our granddaughter, Keegan excitedly chimed over the phone. “I spelled all the words right” she is proudly recalling for us. To most parents and grandparents this is a frequently heard boast from their kids and grandkids. It was for Steven and I, our kids did very well in school (when they applied themselves) and we celebrated every achievement and milestone.
For our granddaughter Keegan, who was diagnosed with ACC while still in the womb, every single accomplishment is a miracle we thank God for every day! Agenesis of the corpus callosum (ACC) is a rare birth defect (congenital disorder) in which there is a complete or partial absence of the corpus callosum. It occurs when the corpus callosum, the band of white matter connecting the two hemispheres in the brain, fails to develop normally, typically during pregnancy. Keegan has a complete absence of the corpus callosum.
Our daughter, Maureen and our son in law, Kevin had no idea what was in store for our Keegan. There were such dire predictions handed down, over and over. Keegan would either walk or talk, not to hope for both. She was determined to do both! She never really crawled, that seemed to be more difficult, coordination wise, than walking. She grabbed hold a chair and would push it everywhere, becoming stronger all the time. We found her a rolling cart to push around, she wasn’t satisfied with the chair any longer. By a year, she was walking, even wearing Grandmas high heels better than she did, LOL.
Talking, we hoped would develop too. She expressed herself with dancing, music was the key. I think she was just bursting to sing! Maureen was encouraged to start Keegan with some sign language, simple thing so Keegan could learn to communicate with us and vice versa. We were all learning to sign, but that just wasn’t going to do for Keegan, she wanted to talk! It came in small increments, but it was a start! By three, she was able to talk. Her speech was by no means easy to understand, Keegan gave a new meaning to the word perseverance! Maureen found every kind of help possible to aid Keegan in her quest to talk and be understood! I was so proud of them both!
I could write a book on the development of our granddaughter. Every time the doctors said she would “probably never be able to do that”, Keegan proved them wrong. It takes her longer to learn a new task, but she never even considers that it isn’t a possibility. Believe me, sometimes she has the bruises to show for it ( ie: riding a bike, the monkey bars, skipping, jumping rope….) she wants to do it all!
Elementary School, we weren’t sure how it would go. Keegan was in a sort of academic limbo, not developmentally challenged enough for special education but some felt too challenged to start public school. Maureen, once again, went to bat for Keegan to have the opportunity to try. The problem wasn’t so much to student population, it was the parents! Keegan looks perfectly normal, you can’t see her disability, so she is just plain stupid according to parents I overheard talking about her. “There is nothing wrong with her” they would say “she looks perfectly normal”. These same parents must have talked about her at home, their students then came to school and bullied Keegan and made fun of her. Prejudice, as they say, is learned at home. Sadly, Maureen moved her to a new school.
Keegan has just started her third year at her new school. She repeated Kindergarten and finished up First grade last year. There was some concern about her development in some areas, but they found no reason to hold her back. The confidence of moving on with her classmates was undervalued, it was a powerful motivator.
It is so interesting to watch her process information and put the information to use. For example, I learned how to do jigsaw puzzles by building the frame and then filling in from there. Keegan, on the other hand, builds the puzzle from the center outward. She solves the puzzles rapidly using her own technique. The same goes for school work. She will struggle to learn simple addition, you think it will never happen. Then, the light bulb will go on, she will have processed the problem with her own solution, just when you think it is a lost cause. NEVER!
Schoolmates can still be impatient and unkind. Somehow, there is such tranquility, kindness, and peacefulness to Keegan that she eventually wins these kids over. She just wants to be a part of it all, not to be left behind. So, when she called after her first spelling test of the year, we are always reminded of what could have been, how far she has come and what an incredibly inspiration she is to us all. We thank God for our “little engine that could”, she thought she could, she thought she could. She knew she could and we knew she could do it too!
Love you! Miss Keegan, Grandma Cyn