Two hours after our daughter Penny was born, a nurse called my husband Peter out of the room. When he returned, his face looked different—sad, and kind, as if he didn't want to have to speak. But he sat down next to me and took my hand and said, "The doctors suspect that Penny has Down syndrome."
We both moved into a period of what I now see as transition and growth, and what felt back then like grief. Peter plunged into what he described as a pool of darkness, but he emerged quickly as a proud and grateful father of a beautiful little girl. My emotions ebbed and flowed between fierce love for our daughter, strong hope for our future, faith that God had a purpose and plan for our life as a family, and debilitating fear.
My fears ran the gamut, from Penny's health to our ability to care for her to our ability to love her to whether we could and should have other children to what other people would think of us. Then I circled through those fears around and around some more. I also wondered if I should fear for the health and stability of our marriage.
Doomed to divorce?
I had heard statistics about parents of children with disabilities in the past, and I remembered alarming rates of divorce. Those statistics didn't lead me to conclude that we might divorce, but they served as a flashing light warning: Danger Ahead!
As it turned out, though many writers still suggest that as many as 80 percent of marriages with children with special needs end in divorce, recent studies don't actually bear out this claim. In 2010, a study published in the Journal of Family Psychology demonstrated that the divorce rate for parents of children with autism is 24 percent. While this rate is 10 percent higher than that of the average family in this study, it is still a far cry from the 80 percent number that gets bandied about. Moreover, this study demonstrated a lower rate of divorce among parents of children with Down syndrome than the general population.
Statistically speaking, my marriage wasn't in danger. And on a more practical and personal level, we went into parenting with a lot of support in place. We had been married for six years when Penny was born. Both of us were active and growing Christians. We had good health insurance and we lived in a state with comprehensive early intervention and free preschool for children with special needs. My mother, a preschool teacher, offered to come down for one night each week both to have time with her granddaughter and also to give us time for a date night. And Peter's own mother had died two years before. The experience of her death prepared us well for the birth of our daughter.
Different, but together
Men and women who have been married for decades probably know already what we learned during Peter's mother's illness. We process emotion differently. In our case, I worried and wanted to crawl into a dark hole. He cried every so often, and otherwise went on with daily life as if nothing was happening. He thought I had abandoned hope of the Resurrection. I thought he was denying his sorrow. In time, we realized that both of us were grieving. Both of us looked forward to a future in which she was alive, and both of us were sad that she was leaving us in the here and now. We just expressed those feelings differently.
So when Penny was born and Peter went back to work two days later and I holed up in the bedroom with my journal, we trusted each other enough not to judge. I believed him when he said he loved our daughter and that was that. He waited for me to work through my sadness and worry and anger. As we walked through doctor's visits and therapy appointments and Penny's heart procedure and questions about whether to have more children, we walked together.
Penny's diagnosis did act almost as a magnifying glass—it made both the strengths and weaknesses of our marriage and our individual lives all the more obvious. But because we had support and had learned how to communicate and love each other through these times, we were able to bring the weaknesses into the light rather than turning away from the ugly truths that she exposed. All couples who face a challenging diagnosis with a child will probably similarly be forced into the uncomfortable position of seeing their own weakness, vulnerability, neediness, and brokenness. The hope and prayer for us all is that the one who heals us of our brokenness, strengthens us in our weakness, and answers us in our time of need will be right there with us.
Although much good can come from allowing God's work, it's intense to feel as though your whole life and your marriage has been placed under a microscope. For couples who are struggling in marriage with a child with special needs, I can offer a few suggestions for what might help:
Accept each other's differences. I grieved Penny's diagnosis for a long time, and Peter was patient and gentle with me. His patience offered me great freedom.
Prioritize your marriage. It's easy with any child to overlook the needs of your adult relationships, and sometimes children with special needs require even more attention than typical kids. Still, it will serve all your children better if you continue to connect with each other, whether it's through a shared meal for just the two of you once a week or a walk together in the park or some other activity that allows you to reconnect as a couple.
Ask for help. Especially with children who have specific physical or behavioral needs, finding time to survive and thrive as a couple can be challenging. This is where the local church can be mobilized to help, whether financially or through acts of service such as monthly or even weekly childcare. Some churches and state services even offer "respite care" so that parents can entrust their children to other caregivers for a short time in order to rejuvenate.
Remember the gospel. God is a God of resurrection, of healing the wounded and the broken-hearted, of helping love to grow. And God is a God of reciprocity, of giving and receiving. As you receive help from others, trust that they will receive blessing from knowing your family and from helping your marriage thrive.
The gloomy (and inaccurate) statistics were wrong about our marriage—and you can defy them too. Ultimately, our marriage is only stronger for having Penny as our daughter, but that is only because her diagnosis humbled us and served as a vehicle for God's sanctifying work in our lives.
Sign up for TCW's free Marriage Partnership e-newsletter for weekly updates and encouragement through the joys, trials, and tribulations of marriage.
Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of A Good and Perfect Gift: Faith, Expectations and a Little Girl Named Penny. Join in the conversation on her blog, Thin Places.