By Kim Horyn
I relocated from the Midwest to Houston, Texas, where I taught high school English, before moving to the East Coast with my husband Rob in 1983. We have three adult children: Will, age 28, works in finance, Katherine, 30, is a special education teacher, and our oldest daughter, Rachel, is 34.
Rachel was diagnosed with cognitive challenges and developmental delays when she turned one year. She lives in a group home with 24/7 supervision and attends a day program, where she participates in a life skills program. Rachel cannot read or write. She can’t tie her shoelaces. She never walked until she was four. She is very social, and she has an incredible memory. She’s caring and compassionate. If she thinks you are sad or troubled, she will sit next to you and hold your hand and say, “I care about you.” Rachel has always had a wicked sense of humor that has created so much laughter in our house.
We thought we brought home a healthy baby girl, but my husband and I started to notice that she wasn’t meeting her physical milestones. As a newborn, she wasn’t initially nursing and not gaining weight. We would later realize that her sucking reflex was delayed. In the meantime we alternated formula with nursing, and she started gaining weight.
Her eyes bounced vertically, but as the MA Eye and Ear doctor predicted, she eventually outgrew that. By eight months, she hadn’t rolled over, and she couldn’t sit herself up, but she could stay seated if we sat her up. She never crawled, instead she “hitched” using her hands on the floor to scoot on her behind. She wasn’t trying to talk. We consulted with our doctor, and we reached out to a pediatric physician’s group for a 2nd opinion. All the doctors were on the same page. They cautioned us that we “needed to relax. Every baby develops at its own pace. There’s no magic formula here. She’s too young for testing. And Mom, you need to quit reading the baby books.” (Please keep in mind that this was 34 years ago.)
When Rachel turned one, we attended a joint birthday party with all of the families in our Lamaze class, which was a slap of reality: the other children of the same age were crawling, toddling, babbling and taking steps.
The next day, I called the pediatrician and said, “We want an appointment, and we want answers.” Our doctor was out on maternity leave, so we were assigned to a pediatrician we’d never met before. He stood at the window reading our file. Rachel was laying on the examining table, and I was standing next to her. I started to undress her as we always did at well baby visits, but he told me it wasn’t necessary. Finally, he abruptly shut the file and walked over to me and said, “Well, Mrs. Horyn, certainly you must know your daughter is retarded.” My knees buckled. If I hadn’t been leaning on the table, I would have fallen to the floor. I was stunned. Rob and I were naïve: we knew something was wrong, but we thought that since she wasn’t meeting her physical milestones, they were going to say Rachel needed intense physical therapy. We would soon be reminded again and again that the brain controls everything, and it’s all connected. Thus, began our journey.
Initially, we were warned to avoid getting pregnant until they could figure out what was going on with Rachel. After three years, numerous disorders and syndromes had been ruled out through tests and many Boston appointments with geneticists, neurologists, gastrologists, endocrinologists, optometrists and others. We were finally told it was likely a fluke at conception. Rachel would continue to see some of the doctors on a semi-annual and annual basis, and she would also continue to see speech, occupational and physical therapists on a regular basis until she was in her tweens. We were given the green light to get pregnant again. Katherine was born when Rachel was four, and Will was born 16 months later. We then had three children in diapers.
For Katherine and Will having Rachel as their oldest sister wasn’t always easy. She was the only student in her grade in our small-town school system, with her level of needs. She was “different,” and she stood out. AND she was very social. Everyone knew who Rachel Horyn was, and Katherine and Will were continually asked if she was their sister.
I remember one time, Will had spent days building a very detailed Lego village, and one night in a fit of anger, Rachel kicked it to pieces in five seconds flat. She scribbled all over a report Katherine was supposed to turn in the next day. They quickly learned how to protect their belongings. Back in the day, there were a lot of tears, anger, frustration…I heard the “hate” word more times than I’d like to remember. And there was embarrassment at times.
Once Rachel and I were carpooling a group of young boys to the soccer field and one of them called another “retard,” which was a forbidden word in our household. I pulled over to the side of the road and asked him if he wanted to walk the rest of the way, explaining that we don’t use that word. He apologized, but I’m sure Will wanted to crawl out through the window.
After an elementary school teacher called to tell us Will got into a fist fight with another boy (we would later learn that the boy was making fun of Rachel), we put Katherine and Will in counseling where they could be candid about their feelings, but also learn coping mechanisms and what their sister’s disability meant to them. It was very effective. They enjoyed special time alone with the counselor while processing their different feelings, and I think it helped them immensely to see through Rachel’s eyes.
When Rachel was in 9th grade, I kept her home from school one day because she had a fever. Katherine was in 5th grade, and she was walking home from the bus stop with our neighbor, John, and 3 boys going to his house to work on a school project. All of the boys were in 8th grade, and one of them looked at John and asked, “Where’s the retard?” As you can imagine there was an awkward silence. Then Katherine spoke up, and said, “Rachel is my sister, and she has a disability. Why do you have to be so mean?” This kid threw himself in her personal space, much taller than she was, and imitated an ape, scratching his underarms and making monkey noises. He said, “Then I guess you’re retarded too. You must be the retard family.”
Katherine walked through our front door and burst into tears and said — and I’ll never forget this — “Now I know how Rachel feels.”
In conclusion, although I was a former teacher and Katherine is now a teacher, my husband and I always believed that Rachel was the educator in our family. She taught us so many of life’s valuable and important lessons:
She taught us how to respect individuals who may look or behave differently.
She showed us how long it took her to learn and do something the rest of us took for granted.
She taught us how to advocate for someone.
She educated us about the importance of dignity.
Patience.
Kindness.
Love and unconditional love.
Forgiveness.
And to find the humor every single day.
Postscript: I called our neighbor to get the names of those boys who walked home from the bus stop with Katherine, and I reported them to the middle school principal. They all got in-house suspension because although it was only one boy who was bullying, none of the others tried to stop him.
