Nicole was born with cerebral palsy. She doesn’t speak and has the intellectual capacity of a 3- to 6-month-old baby. She’s been in her mother’s care for almost 40 years, had several brushes with death and many more remarkable experiences with life. I worried about how I’d write their lives. I feared I’d say something stupid in the interview. And I wasn’t sure how Lisa would feel about a writer hanging around with a recording device and a notebook. But when I finally arrived at the Goodsons’ house in St. Clairsville, Lisa hugged me before the door even closed. She was warm and open, and she thanked me for coming to hear their story.
I’m grateful to be able to tell it.
AN UNEXPECTED BLESSING
Lisa was pregnant at 16. She planned to give the child up for adoption, and then her mother offered to raise baby Nicole as Lisa’s sister. According to Lisa, however, God had other plans.
“Nicole came, and she was mine,” she said, simply. Lisa is a woman of profound faith, and though Nicole was born with serious complications, she didn’t hesitate when it came time to be a mom to Coley, the nickname she gave her daughter.
“If God wanted Coley to be any other way, He would have given her to me [that way],” Lisa said. “This is the way he needed me to have her. I’m not mad at anybody about that. And I can’t say over the past 39 and a half years that I haven’t said to God, ‘Why?’ I just can’t recall those times.”
Lisa finished school while caring for Nicole. Then, when Nicole was 5, her brother Erik was born. Erik, Lisa says, has been an incredible brother and son. At times, she worried that he missed out on “regular kid” experiences because the family activities revolved around Nicole’s care, but Erik is grateful for his childhood just as it was. At his wedding last fall, he, Lisa and Nicole shared a family dance with Nicole in his arms.
This kind of family doesn’t happen by accident. It’s the product of love, prayer and hard work.
“I’m blessed with two of the most amazing kids that contribute to who I am today,” Lisa said. “And I would do it all over again. Because I would still take her the way that she is. My life might have been different. That doesn’t mean my life would have been better.”
Lisa is Nicole’s primary caregiver, and when she’s at work as a dispatcher for the Ohio State Patrol, an aide takes over. Lisa says Christine has been helping to care for Nicole for 19 years, and calls Christine her best friend and co-parent.
UPS AND DOWNS
There are plenty of families who face similar challenges, but what makes this family so remarkable is Lisa’s dedication to what she calls “living their best life.” It’s like a mantra, a philosophy by which she lives each day. That means giving her daughter the same experiences each of us enjoy, whether they happen on a faraway adventure or in the backyard. When she was a kid, Coley attended the School of Hope where she was chosen as Homecoming Queen.
She loves butterflies, so her she and her mother raised and released monarchs. At the Columbus Zoo, Coley got to feed a giraffe. She’s been to the beach and family reunions. And when Lisa was able to get a specialized wheelchair for Nicole that allowed for more mobility, the two of them set out on a road trip to Washington, D.C. Lisa wheeled Nicole right up to the Martin Luther King Jr. Memorial. It was a moment Lisa will never forget, and she’s thankful she experienced it with her daughter.
The family has faced challenges, too. Nicole had some scares in the recent past, and her family was prepared to say goodbye. However, her strength of spirit amazed her medical team, and she pulled through. Her nurses adore her and argue over who gets to tend to Coley when she’s admitted.
SUPPORT AND LOVE
The Goodsons are surrounded by a community of people who love and support them. Lisa is grateful for her church family; they attend Harbor of Hope Assembly of God.
“Honestly, they have been the best church family that I could have ever asked for,” Lisa said. “They pray for us. They check on us. They’ve always been very welcoming, always including her in things.”
The Goodsons find support from strangers, too. They live next door to a therapeutic horse farm, and the owner recently invited Nicole for a visit. Similarly, a mounted police officer in Washington, D.C., introduced Nicole to his horse, Reebok, who allowed Nicole to pet him.
One surprising act of kindness really stands out. During Nicole’s recent infection, the pharmacy told Lisa that her daughter’s medicine cost $4,500.
“My insurance didn’t cover it,” Lisa said. “And they gave it to me anyway. They said, ‘Just take it.’”
Of course, all parents inevitably hear criticism, and Lisa has faced judgment from others. She decided long ago that she would not put Nicole through procedures that diminished her quality of life, even if they had the potential to lengthen it. Not everyone agrees with Lisa’s decisions, but she knows in her heart how she’s meant to care for her daughter. She’s learned to shut out the negativity.
LOVE OF MUSIC
Music is an essential part of Nicole’s life. In her youngest years, she was miserable when Lisa took her to Easter Seals for therapy. From the moment she crossed the threshold until she left, she cried. Her discomfort made it difficult to achieve any progress.
“There was nothing they could do,” Lisa said. “She was 11 months old. We tried medication a couple of times, but she would cry from the time we got there, and I’d sit there and cry with her. But then, ‘Endless Love’ by Lionel Richie and Diana Ross came out. And that’s when I found out that music was everything. Music has been our saving grace.”
Indeed, when I arrived, I could hear music coming from Nicole’s room.
Recently, Lisa took Nicole to St. Clairsville’s Music Under the Stars outdoor concert. Nicole was uncomfortable in the grass on her cot, so Lisa put her in her chair and changed the venue.
“I took her up to the pavement, and we danced,” Lisa said. “We haven’t done that for years. And we danced, and I cried. We danced and danced like nobody was watching. And there was a gentleman in the van next to where we were parked … and he was sobbing. And he said, ‘I just want you to know that that’s the most beautiful thing I’ve ever seen in all my life.’”
FAITH ABOVE ALL
Lisa has always leaned heavily on her faith. Doctors told Lisa that Nicole wouldn’t live past her second birthday. In December, Nicole will turn 40. She’s defied the odds, and though she’s had some scares in recent years, Lisa continues to take each day as it comes, and she puts her trust in God. Faith requires trust, and sometimes Lisa is afraid. But she said that God has shared His plans with her, and He doesn’t want Nicole hidden from the world.
“God told me this years ago: don’t put her in a box,” Lisa said. “I’m supposed to share her. She’s supposed to be out here in the world, with people. You wouldn’t believe what this little girl does for people.”
When you see the Goodson’s social media feed, you start to understand what Lisa means. I saw pictures of Nicole at a Lebanese festival and swimming in a pool. She was right there at her brother’s wedding and got to spend the morning with the bridesmaids. You also see the number of people who comment on the photos. Support for the Goodsons is not just overwhelming — it’s genuine. People find joy in Coley’s joy.
Lisa documented Nicole’s 38th year of life on Facebook using the hashtags #chapter38 and #coleyspeaks. Friends can follow the Goodsons and check in on Nicole as she lives her best life. Also, in the spirit of the children’s book character Flat Stanley (whose flatness leads him to all sorts of adventures), Nicole’s friends can now help her see the world with “Flat Coley.” Lisa mails a paper version of Nicole to folks who then post photos of Flat Coley on her own adventures. Flat Coley recently visited the Michigan Speedway, went fishing in Minnesota and traveled around Great Britain.
“Nicole’s never been typical. There’s nothing ever. They told me she would live to be 2,” Lisa said. “She gives people hope. Our life gives people hope. Because no matter how hard it gets, or how hard it may seem, you just persevere. You know, you might not do it as quickly as you used to, but God wasn’t done with her yet. And I’m still not supposed to put her in a box.”
Nicole is most definitely not in a box. The proof is in the numbers: Lisa had a birthday card shower for Nicole a few years ago, and Coley received 752 cards. These women are as loved as they are loving.
In hindsight, I wish I’d given Lisa a call a year ago. The interview ended with her giving me some parenting support and a long, much-needed hug. You absorb such strength and joy when you’re with this family.
Before I left, I went back to Nicole’s room to tell her goodbye. She was enjoying her music, and I told her how lucky she was to have her mom and how lucky her mom was to have her. Then Lisa queued up one of Nicole’s favorite songs: TLC’s “No Scrubs.”
And we danced.
• Laura Jackson Roberts is a freelance writer in Wheeling, W.Va. She holds an MFA in Creative Writing from Chatham University and writes about nature and the environment. Her work has recently appeared in Brain, Child Magazine, Vandaleer, Animal, Matador Network, Defenestration, The Higgs Weldon and the Erma Bombeck humor site. Laura is the Northern Panhandle representative for West Virginia Writers, a blog editor for Literary Mama Magazine and a member of Ohio Valley Writers. She recently finished her first book of humor. Laura lives in Wheeling with her husband and their sons. Visit her online at www.laurajacksonroberts.com.