Parenting Children with Disabilities: Finding Hope and Joy

Our daughter Nicole turns 29 next month. Because she had so many medical complications after her extremely premature birth, she was not expected to live three years, let alone 29. So like every child, she is God’s gift to my wife Bev and me, and even more so that she has lived this long already.

The medical struggles and pain she has endured, as well as the many developmental milestones she has missed, brought suffering into her life and into our lives too. Yet as we grieved for the imaginary child we never had, and as we came to love the child God brought into our lives, we found joy and hope. Finding those blessings came as we accepted some basic truths about our situation.

A New Normal

The actor Whoopi Goldberg has said, “Normal is just a cycle on the washing machine.” I love that quote, because the words “normal” (and “abnormal”) should never be used about human beings. No one is “normal.” Each of us is unique, and each of us has a big problem. In the apostle Paul’s frank language, we “all have sinned and fall short of the glory of God” (Rom. 3:23 NIV). Acknowledging that big problem helps us to be humble. We all are needy and broken.

Although a “normal person” does not exist, we do have normal routines. Those normal routines can be severely disrupted by a child with disabilities, but over time families can develop a new normal. My wife and I never anticipated the kinds of challenges we would face, and we did not understand the ways God would sustain us through the difficult times. For example, during her teen years Nicole had seizures about twice a month, and every time she had a seizure she stopped breathing. When this first happened, we were terrified, but over time, administering anti-seizure medication and “bagging” her till the seizure stopped became part of our “normal” routine, and God sustained Bev, Nicole, and me through these frightening times.  

Gifted by God

Learning to love Nicole for who she is and not who we want her to be has taken us time and grace. Nicole’s physical and intellectual disabilities prevent her from doing the kinds of things that most of us take for granted. Yet as a child of God and participant in the work of God’s kingdom, God has given Nicole a wide variety of gifts. For example, Nicole neither worries about the future nor frets over the past, but lives fully in each moment. She loves to worship, and her vocalizations, smiles, and even laughter remind everyone worshiping with her of the joy God gives his children through worship. Less obvious but even more important, Nicole models a deep and rich faith in God and in other people. Simply and unquestioningly, she trusts that people will love and take care of her, and God will too.

New Adventures

Bev has done a great job reminding me and our other children of the privileges and opportunities that Nicole has brought into our lives. Nicole received a Make-A-Wish trip about 15 years ago. Her wish, to receive physical therapy with dolphins, allowed our whole family to travel to Key Largo Florida where, thanks to Nicole, we spent considerable time with the dolphins. Nicole’s siblings even spent a few minutes in the water with the dolphins too. Thanks to Nicole, we never had to wait in line at Disneyworld. Every spring Bev took our other children out of school for a half day so that they could attend the Festival of the Arts at Nicole’s school. We enjoyed the Shrine Circus several times because children with special needs and their families were invited to attend free, and the Shriners invited Nicole (and her family) to picnics every summer that included games, prizes, clowns, and pontoon boat rides.

Hope

Through Nicole, God has taught us hope—not a false hope that all of our wishes will come true, and we will live happily ever after—but true Christian hope that God never fails us nor forsakes us. There’s a false “statistic” that 80 percent of all couples who have a child with a disability get divorced. Actually, the divorce rate for these couples is about four to six percent higher, and couples who have children with Down syndrome have a lower divorce rate than average. God sustained our marriage; there is hope for your marriage too.

Sometimes God uses our children to push us into new directions that we never could have imagined. God used Nicole in our lives to lead us to the callings we have today. Bev was a German teacher and now teaches special education. I had been a parish pastor and now serve my denomination as the Director of Disability Concerns ministry. Not too far from my home are a number of ministries that were started by the parents of children with disabilities, and in several cases the parents honored their children by naming the ministries after them, such as Benjamin’s Hope, David’s House, and Olivia’s Gift.

The Need to Come Alongside and Advocate

I don’t want to paint a picture that is too rosy. Life with a child with disabilities can be difficult, and not all marriages survive. There are many single parents raising children with disabilities. Some children with disabilities have challenging behavior issues. In the midst of a prayer for God’s help, the Psalmist affirms, “Surely God is my help; the Lord is the one who sustains me” (Psalm 54:4). Be assured that however difficult your road, God will not fail you nor forsake you. The Lord is the One who sustains you, and many excellent resources can help and guide.

I give thanks to God for his sustaining grace, for friends and fellow church members who have been walking this journey with us, and for local, state, and federal assistance that we have received and continue to receive to help us care for Nicole. Not only do people in churches need to go out of their way to walk with people with disabilities and their families, but also we need to advocate for government programs that help members of our society who live with significant challenges. God is with us, and he usually works through other people to sustain us.