My sister, Amanda, has long been a writer at heart. When she was a baby, she used to climb the stairs and sit with me in my bedroom while I wrote page after page on spiral-bound note paper. I wrote and illustrated hundreds of pages of horse stories while my patient companion was content to just sit cross-legged on the bed near my desk, watching me, quietly coloring or just waiting.
At that time, I didn’t realize the impact this was having. Amanda, who has Down syndrome, was just a baby then. I graduated and moved away to Alaska. In the meantime, Amanda grew up illiterate. When she was around 20 years old, I moved back to Michigan and was spending lots of time with her. I sat with her in the big gold chair in the living room, looking at the back of an Eddie Rabbitt album. Amanda was a huge country music fan. I was reading the words to the song, “I Love a Rainy Night.”
She was attentive as always, and I began pointing out the letters and sounding them out. When we reached the end of each line, we would sing it.
Perhaps it was the simplistic repetition of the song, but I thought she was catching on.
Later, watching a “Hooked on Phonics” infomercial, I noticed they were using music as a foundation for their literacy program. So, I saved my money, ordered it and brought it home, along with a couple of Dr. Seuss books. Mom and Dad wisely sent the program to Amanda’s school. It helped not only Amanda, but other kids in her special ed class learned to read, too. When I asked Dad about her progress later, he said, “Yes, she is learning, but it’s going to be limited.”
I will never forget the first time Amanda stumbled through, “Green Eggs and Ham.” I was in tears. She was 21 years old by then and opening a whole new door for herself.
From that point on, the household exploded with paper. Amanda was filling every spiral-bound notebook in sight, practicing her writing in her shaky, angular cursive hand. She copied pages of old paperbacks. Eventually she began writing her own thoughts.
A writer was born.
When finally she began journaling after our mom’s death, I asked her, “How would you like to write a book with me? We can write about Mom and Dad and our experiences with the family.”
She loved the idea. We pored over our story, building it one page at a time, editing and discussing and reading to each other. We lost Mom, and we cried and wrote. We lost Dad, and we cried and wrote some more. Our siblings battled over Amanda’s guardianship, and we wrote on in determination. We were partners in a combined effort. This was our project. During our collaboration, Amanda and I agreed on several points:
- People with disabilities need to have a voice.
- It’s important for people to get their affairs in order, to make their wishes known in a legal, indisputable way.
- No one has the right to take your happiness.
- Real love can withstand anything.
We hope that our story will help others. When I asked her if she was ready to become a published author, she said, “I cannot wait! I. Can. Not. Wait.”
So the little girl who quietly sat by has become a literary force in her own right. Unencumbered by her disability, she forges onward.
“Limited.” Indeed! If Dad could see her now.
The North Side of Down is available on Amazon.
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