As parents of several children, including a now-28-year-old woman who has severe multiple disabilities, my wife Bev and I know from experience that raising children brings grief and joy. Raising children with disabilities accentuates these highs and lows.
When that 28-year-old, Nicole, began life 14 weeks prematurely, Bev and I experienced love and protectiveness, grief and difficulty as new parents. Nicole had an even more difficult journey. She spent more than her first six months of life in a hospital. The joy of finally being able to take her home was offset by the challenges of raising a child with intense medical needs. As time went on and she missed one developmental milestone after another, we began to confront an emotion for which we were not at all ready. We felt grief, even though our child was right there in front of us, sometimes smiling and laughing.
Over time, we came to realize that our grief surfaced from the unwelcome clash between the child we had hoped for versus the child we were discovering our daughter to be. We grieved for Nicole too, who had to go through so much pain, so many medical procedures, so much illness, and we grieved that she would not enjoy many of life’s pleasures, like independently caring for herself, having a conversation with words, being in a romantic relationship, cooking a meal, or working at a job.
Yet, as we have come to know Nicole, the child and now adult whom God made her to be, we have felt great delight and joy as parents too. We have celebrated milestones like the first time she bore weight on her legs and the first time she laughed. Her smile is warm and her laughter contagious. She loves music and delights to be with God’s people in worship. She loves swimming, going for walks (riding in her wheelchair), being with people, roller coasters, sledding, and paging through books and magazines. Nicole has taught my wife and me so much about dependence on God. She has been an expert at mindfulness long before that word became popular, neither living with regrets about the past nor worry about the future. Instead, more than anyone else we know, she has total trust that she will be cared for.
Taking care of her hasn’t always been easy. We have no idea how many trips to the emergency room we have made with her. It may be more than 100. But we have not had to face difficult behaviors that some parents of children with disabilities do. Some parents deal with meltdowns at home and in public, physical violence, an inability for the child to understand or conform to social norms, shouting and screaming, and running off anytime of the day or night.
Parenting a child with disabilities requires of parents a greater intensity of time and energy than caring for kids without disabilities. Bringing the child to and advocating with doctors, social workers, special education professionals, therapists, and other professionals can feel all-consuming. Some parents feel guilt because they neglect their non-disabled children for the sake of the child with a disability. Siblings of the child with disabilities can struggle for various reasons. Families might have to limit their activities in order to include the child with a disability. Other children might tease the siblings because of their disabled sibling. The added stress can strain marriage bonds, some to the breaking point. Time and energy for friendships can wane.
Families who found refuge in God through their church community may find themselves unwelcome there because their child with a disability is considered “disruptive.” In fact, one study found that one third of families leave their faith community because they were not welcome. Not only can parents feel abandoned by their church, they can feel as if God has abandoned them as well. They feel as if their prayers float about unanswered. I have found Kathleen Deyer Bolduc’s The Spiritual Art of Raising Children with Disabilities to be very helpful in navigating the painful struggles that can come.
Pain and struggle don’t have to have the last word. God is faithful through every challenge that we encounter. There is hope and joy that come with parenting too, and with helpful resources parents can find support to navigate the challenges of parenting a child with a disability.
But to be honest with God, sometimes we need to hurt and lament. Many of us have cried with the psalmist:
How long, Lord? Will you forget me forever? How long will you hide your face from me? How long must I wrestle with my thoughts and day after day have sorrow in my heart? (Psalm 13:1,2)
As we cry out to God, we discover that we are not alone on the journey, but our God is faithful to walk with us through all of the challenges that we face. We can claim the words of John 16:33 that say in this world we will have trouble, but we are taking heart, because Jesus has overcome this world!
Rev. Dr. Rob Toornstra