Special Child, Special Parents

Being a parent means many things to many people. To some, it’s a calling. To others, a longing. To still others, it’s merely another title to add to the resume of life. There are good parents and bad parents and lots in between. However, if you’ve ever met the parents of a disabled or special needs child, you’ve probably met some of the best parents there are. My friends Sue and Brian are great examples of this and truly have become my parenting role models. This is their story.

Jessie was born 23 years ago. She was Sue and Brian's second daughter and they were thrilled to welcome her to the family. For a while, everything seemed fine. It wasn’t until Jess was several months old that one of Sue's friends took her aside and gently suggested that Jessie see a physician because something didn’t seem right. Since Sue was a nurse, this was especially difficult to hear. Jessie was indeed developmentally delayed with no particular cause or diagnosis. They knew their lives were forever changed. Nevertheless, they forged ahead. They enrolled Jessie in classes and programs and sought out every possible resource that could help them and help Jessie. They eventually had a son and then another daughter and somehow fit Jessie and her unpredictable nature into their hectic lives. They certainly faced daunting challenges that could have damaged their family life or their marriage. They never let that happen.

What I’ve learned from Sue and Brian's parenting skills is that they have a seemingly unlimited supply of patience and love. Despite the fact that they are at an age when many couples are beginning to enjoy the benefits of an empty nest, Sue and Brian are sitting patiently with Jessie as she watches Mister Rogers or Lawrence Welk, two of her favorite TV shows. Sue makes no bones about the fact that the life they lead is not easy. Once a special needs child graduates from high school, the programs and opportunities for parental respite are few and far between. Yet somehow, they’ve managed to wrap their lives around Jessie and make it all seem so easy and so worthwhile.

Still, what’s most impressive about Sue and Brian and their incredible love for Jessie is how many lives they have touched through their unique family experience. When I sit behind them in church, I watch as they give Jessie gentle pats on the back. I listen as Jessie sings along, often better than the professionals. She sometimes cries when the songs are too sad, but rather than segregate her from the congregation, they reassure her, as do her brother and sisters who do a terrific job modeling their parents. Now that Jessie's siblings are teens and older, they occasionally spend evenings or afternoons babysitting their adult sister, something most young people may never experience. In return, they too have been given the gift of kindness, compassion and generosity that have made them all outstanding and mature young adults.

My own kids have also been lucky to have been touched by Jessie and her bright smile and unbridled enthusiasm. To know Jessie is to know pure innocence and happiness. She always smiles and loudly proclaims: “It’s a sunny day!” She runs to greet nearly every visitor and has an infectious laugh that makes me smile every time she’s near. We know not to sit too close to her in church only because she just loves to socialize and wants to turn around to say hi and hold our hands. Often, Jessie's presence is simply the best part of church.

There are so many other stories like Sue, Brian and Jessie's but few that have made such a deep impression upon me. Although I too am the parent of a developmentally disabled child, Sue and Brian continue to motivate me to be more patient, more loving and more generous with all aspects of my life. And, of course, Jessie inspires me to be happier because in her world, every day is a sunny day.