If you were to walk into my house today you might think I have lots of young kids. There are usually crayons and markers on the table with blank books and coloring books set aside. At some time during the day, there are dog toys strewn under the table and a game of “Herd Your Horses” or “Sorry” opened to invite a rousing competition.
Hanging across the top of the sliding glass doors are homemade garlands and wreaths of hearts. On the table there’s a bouquet of paper hearts and flowers, a daily reminder that Valentine’s Day should be celebrated all during the month of February.
While most 20-year-olds start their day surfing social media, my daughter sips her coffee while watching old favorite cartoons like Arthur or Martha Speaks on PBS Kids. Some days I even join her because the shows are just that fun.
These little reminders of childhood keep me young and give me more gray hair, all at the same time. They keep me young in the present moment, they age me when I worry about my daughter’s future as an adult with disabilities. In those times, I remind the Lord that I want my daughter Johanna to live a purpose-filled life and I want to live at least a day longer than she lives. It’s a strange request, I know. But it’s the prayer of many parents who are raising children with disabilities. It’s hard to imagine them navigating life on their own.
Last weekend I had a pretty profound experience of God’s grace in a very simple way. Johanna has been getting together weekly with a friend who has similar challenges to her own. Our families actually met because the mother contacted me through this Life on Purpose column. Now the two of us and our daughters have become close friends. Last weekend they brought us to visit a drama group for people with disabilities called “East End Special Players”.
The group consists of about 40 or more adults with disabilities, ages 20 and up, with some people who may even be in their 40s or 50s. But all of them have some kind of cognitive disabilities and some, like my daughter and her friend, require an aide to assist them. I thought we would fit right in. My daughter and her friend did. But I was honestly overwhelmed. I had to face that fear of the future again as I met these special people, some of whom lived in group homes, some on their own and others with their families.
As soon as I settled Johanna, I scurried out of the building to toilet her service dog — and to catch my breath. A million thoughts raced through my head as I grappled with a glimpse of the future. Although we are planning for Jo’s future and to keep her in our home, I still fear that she could be navigating life on her own in a society that sometimes ignores or even abuses the most vulnerable in our midst.
But then something magical happened. As I sat in the back of the room, Johanna and her friend were overwhelmed with others reaching out to them. Johanna was warmly welcomed as the newcomer with cheers and encouragement. They asked her about her interests in performing and Johanna, for whom every story is a song cue, beamed from ear to ear as she told them about her experience with singing and performing and her interest in their play. If she had any inclination to acting shy, it was washed away with the cheers and questions of interest from this group of special people.
I viewed the group with amazement. Kindness overflowed from these wonderful young and older adults with special needs. They took interest in others and support each other and those of us who were there to assist someone. If someone spoke out of turn, they quickly followed the director’s admonitions as courtesy prevailed.
When it was time for Johanna to audition, she sang a song she’s sung hundreds of times with me, on stages and churches around the country. She didn’t sing as well as she usually does because she was too excited. But it didn’t matter. All eyes were locked on her and ears opened to hear Jo’s gift presented in song. No one was on looking at their cell phone or in a texting conversation with someone far away. This group was attentive to each other and appreciative of one another’s gifts.
The next part of Jo’s audition was to try out for a role in the play. The actors all took their places as Johanna was instructed where to stand and given the background to the role she might be given. I was truly amazed at my daughter’s abilities and at the encouragement of the actors surrounding her on stage and off. As the director read the lines, Johanna repeated them and executed them with confidence and grace. And she got the part!
There was so much love in this place. Even though these wonderful people have faced and are facing challenges that most of us can’t imagine on our best and worst days, they exude love and offer others the respect people deserve.
These special adults require assistance to live in our society. All of them need some kind of accommodations to survive and thrive in a world that strives for independence. But rather than being seen as a burden or task for others to take care, people with special needs bring out the best in all of us, if we let them.
As I watched my daughter’s maturing as a disabled young adult making her way in the world and the other adults helping to lead the way, I couldn’t help but recall Jesus’ words about children and their value in this world and beyond.
“The disciples came to Jesus and asked, “Who, then, is the greatest in the kingdom of heaven?” He called a little child to him and placed the child among them. And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven. And whoever welcomes one such child in my name welcomes me.” Matthew 18: 1-5
Our world is a better and more godly place, perhaps even saved, as we welcome the children and the child-like in our midst. The health of a society can be determined by the care and compassion we display towards our most vulnerable members. We do well to support them and let them teach us how to love and be loved.
Let the children and the child-like among us teach us how to love even in the face of rejection, how to encourage and be kind to one another. Let the children teach us to respect one another for who we are and not measure another’s value by the tasks we perform.
We celebrated Valentine’s Day with a big dinner which my daughter planned and prepared for weeks before. She invited her new friend and their family. The two girls made the dessert for this special dinner for our two families. The girls also set the table on the special heart-covered placemats Johanna created to decorate the place settings.
While I was washing the dishes from all our dinner prep, I looked out the window at the setting sun. In the background, the girls were belting out Taylor Swift songs with extreme confidence and joy. It was a very good day which ended in a very sweet dinner with special friends. I thanked the Lord for placing these children in our midst to remind me how to love and be loved, to remember that all that life is a gift and to lead the way to the kingdom of God.
Eileen Benthal is a writer, speaker and wellness coach with a B.A. in Theology from Franciscan University. She is the author of Breathing Underwater: A Caregiver’s Journey of HopeEileen and her husband Steve live in Jamesport and have four young adult children. She can be reached at CareforaCaregiver.com