Life never turns out the way you expect it to. I remember in graduate school, I took a group counseling class that actually was hard-core group counseling. When it was my turn to talk about a life plan, I had it mapped out with job, husband, house and kids – I think I even had ages attached. One person in the class dared to challenge me on my diagram.
It took me too many years to forgive that classmate for pointing out it may not go the way I planned. I was angry at her for a long time – she was not a friend or even in my program, but I do remember her name, Robyn.
I am sorry Robyn. I can say that now because I know life doesn’t turn out the way you plan or expect. She was trying to help me out. I had to learn it for myself, though.
I did get the husband and the house on time. Kids came later than I wanted. Ben was our first, and it took my husband and me six months to come to terms with the fact that our little baby had special needs. He wasn’t lifting his head, didn’t babble and wasn’t reaching the physical milestones babies are supposed to meet. When we did realize it, we jumped into a world of doctors and therapists.
Fast forward to a 14-year-old Ben. He is handsome, happy and fiercely determined. He is non-verbal and uses a wheelchair to get around. Ben can crawl around our home and climb on any piece of furniture. He is well-known for throwing his brother out of his bed at any time of night.
Since Ben was 4 years old, we have had caregivers in our home. It started when I was pregnant with our third son and lifting Ben was difficult for me.
By this time, I was accustomed to therapists and case managers at our house. Adding more people to the mix meant losing more privacy, training people how to work with Ben and knowing that it wasn’t always going to be done my way.
And ten years later, we have caregivers around our house early every morning to help Ben get ready for school and put him on the bus and in the afternoon to help with his dinner and nighttime routine. Caregivers take Ben out on the weekends – Smelly Cat, NoDa Company Store and Dunkin’ Donuts are his favorite hangouts. They take him swimming during the summer; they take him to walk in the park with his special braces.
It’s funny to me to use the word “caregivers” because they are more than that. They are part of our family. They understand my worries about Ben: who will give Ben kisses and hugs when my husband and I are not around? They heard my complaints when I went into advocacy overdrive to fight Charlotte-Mecklenburg School’s changes to Ben’s classroom.
They cheer when all goes well and commiserate when Ben pulls an all-nighter. They are the ones who teach our other boys about Iceland and new apps to learn Spanish.
If we didn’t have this help, I’m not sure where my husband and I would be mentally, physically or emotionally. Perhaps, not even together – couples with a child with special need face a higher rate of divorce. Our other kids would not get the attention they get from us.
For years, our youngest son raced to put on his pajamas before Ben – a game one of the caregivers started. Ben gained another brother, too – the caregiver who has been with us for more than ten years has a son. They annoy each other like they should, share food and love one another like brothers.
Most of the caregivers start when they are in their early twenties and stay four or more years. Over the years, we’ve had more than 10 people, almost equally male and female. Some have been referred to us through friends. Others I’ve found in unusual ways.
Once when I was on a quest to teach Ben sign language I introduced myself to people using sign language at the YMCA pool. They led me to a sweet UNC Charlotte nursing student.
Even when they do move on for a job, marriage or the birth of their own children, we stay in touch. It’s not unusual for us to get together as a large group for apple picking, pumpkin picking and an annual visit to see McAdenville’s Christmas lights.
For our family, they are the earthbound angels that help make Ben’s life special and our lives easier. If we don’t form a bond, it means the relationship wasn’t meant to be. I usually know quickly – and I’ve let at least three go.
Working with Ben is a paying job for these caregivers – I get that. But for them to stay, it has to mean more. They have to love Ben. Caregivers take him to their family birthday parties and church events. They introduce him to their friends. One attended sleep-away camp with him for an entire week. They push Ben to be as independent as he can possibly be – my number one goal for him.
My diagrammed life didn’t turn out the way I intended, luckily. My plan was too neat. I didn’t know all those years ago in group counseling how I would need these special people in my life.
Photos: Vanessa Infanzon