Medical Parenting and Spirituality

Like many life altering events or experiences, parenting a child with disabilities and medical complexities can profoundly impact one’s spiritual beliefs. I recently listened to an episode of the Rare Life podcast during which host Madeline Cheney dove into this topic by asking three mothers of children with rare diseases to explain how their parenting journeys have changed their religious and spiritual beliefs. As you might imagine, responses varied greatly. While one mother’s spirituality was strengthened by her experiences, another found her lack of faith cemented by her daughter’s disease. Yet another described how she found herself turning away from her church when members did not welcome or support her disabled child.

Since my youngest daughter, JJ, was diagnosed with Rett Syndrome, my own belief system has also transformed. Before my daughter began exhibiting symptoms of her rare, progressive disease, my own ideas about organized religion and faith were shaky. I thought perhaps there was a higher power out there, but it didn’t matter much to me personally. I figured I would simply lead a good life and hope for the best.

But after watching my young, vulnerable daughter suffer intense and prolonged physical pain and lose many of her skills and abilities, I didn’t want to believe in the existence of a higher power that would allow these things to happen. I took JJ’s suffering personally.

Whatever remnants of belief I had were crushed by witnessing my daughter’s own feelings about her disease. Though she has lost her verbal ability and hand use, JJ is able to communicate through an eye-gaze device. She has used her device to tell me that she feels jealous of her able-bodied peers and has repeatedly called herself “unlucky.” So not only does she regularly suffer physical pain, she is also keenly aware of every difference, loss, and indignity inflicted upon her by Rett Syndrome. This thought was the final blow to my own spiritual belief system—until recently.

One day, while reading a book that touched on the subject of spirituality, I realized just how much overlap there is between many kinds of spiritual practices and life as a caregiver.  After some reflection on the topic, I now believe that no matter what one believes (or doesn’t) about any kind of higher power, caring for a loved one can bring with it traces of the sacred and divine. Caregiving can provide us with a deeper sense of purpose, a new perspective about the beauty and fragility of life, and intense gratitude for the things and people that help us cope. It also often anchors us in the moment and bonds us closely to others who share similar struggles.

Despite my lack of faith in any sort of divine being, caring for JJ has most certainly given me a sense of higher purpose and imbued my life with meaning. I might never describe this lifestyle as happy, though it does include many joyful moments. But I never get out of bed in the morning wondering why I am here or if I matter. JJ needs me to function. She cannot walk or talk without assistance. She also can’t feed herself, dress herself, transport herself anywhere, medicate herself, or advocate for her own needs. I do all these things for her. Without my help (or that of another adult), she simply would not survive. Stripped down to its most basic truth, my role as her caregiver is one of life and death.

Not only do many parents like me feel intensely valuable (at least to our loved ones), but we can also experience a kind of self-transcendence because much of what we do is in service to others. It’s true that this service can often feel depleting or downright exhausting, but there are times when it feels like an honor to care for someone else. Caregiving is both a thankless, invisible job and one of the most important sacrifices a person can make. We caregivers devote ourselves to reducing our loved one’s pain, maintaining their dignity, and appreciating the time we have with them—however short or long that might be.

In addition to providing meaning and transcendence, caring for JJ has also helped me appreciate the moments of joy in our lives. When I am not working to keep JJ alive and free of pain, I often pour my energy into creating good memories for her and her older sister. I create family traditions, organize social opportunities, cook JJ’s favorite foods, cuddle her, play with her, dance with her, and laugh with her. As I savor these moments, I sometimes feel the kind of awe I imagine others might find in things like nature, meditation, or quiet prayer. Often, that peace creeps over me when I least expect it.

Just as many people find a support network in their church, synagogue, or mosque, caregivers can also reap the benefits of a strong community. I know connecting with others is easier said than done for people like us, but I have found it to be well worth the effort. At first, it felt nearly impossible to leave JJ during her complex, stressful evening routine so I could attend a support group for medical mothers. But over time, it became so important that I dreaded missing a single meeting. After a few years, I even became one of the group’s facilitators. Having other mothers who understand my struggles and can laugh and cry with me has changed my life. I no longer feel so alone. Instead, I now have people to turn to when I feel adrift, confused, or angry or when I want to share our family’s private joys and triumphs. These types of connections are vital. Despite the wide spectrum of their spiritual beliefs, the three women interviewed in The Rare Life podcast all talked about the kind people they had come across during their parenting journeys and the positive impact these relationships had on their lives.

Our beliefs about the nature or even existence of a higher power are personal, complex, and varied. But these beliefs don’t have to act as a wedge or stop us from finding common ground with one another. Caregiving itself is a type of spiritual practice for all of us. No matter what we believe, we all know we have a limited time on this earth. We are much less likely to have regrets if we use that time to find purpose in the services we provide to our loved ones, appreciate the fragility and beauty of life, savor our joyful moments together, and create meaningful connections with the people who matter to us.