FREQUENTLY ASKED QUESTIONS
• Why did you write Involuntary Joy?
• What do you mean by “murkiness in the middle”?
• How did you come up with the title Involuntary Joy?
• What do you hope readers take away?
• Why did you decide to self publish?
• What did you learn about yourself while writing?
• Would you change anything?
Why did you write Involuntary Joy?
After my oldest son’s birth in 1991, I was not able to find a book about what it felt like to become the mother of a child with disabilities. I found books that focused on the rewarding aspects of parenthood in spite of difficulties—but nothing that addressed the range of emotions I was experiencing. I was also able to find books that described practical aspects of having a child with a disability—such as dealing with doctors, treatments and school issues—but they didn’t explore what I’ve come to think of as the murkiness in the middle.
I wanted to write a book that described the spiritual and identity struggles that occurred when I sensed that my son’s life had diverted my life plans. I hoped that writing about my feelings during that time might validate and encourage parents or guardians who are facing similar struggles. I also wanted to invite others—who may only know life through children with normal abilities—to live experiences that few know of firsthand.
BACK TO TOP »
What do you mean by “murkiness in the middle”?
It relates to my process for redefining life. I use the term to refer to the emotions that lie between self-awareness (Point A) and acceptance (Point B). Accepting Stross was the easy part; accepting who I was because of him was more challenging. For example, Stross’ birth dramatically altered my plans for the future and made me aware of how I had defined who I was based on those plans—thus, Point A, my self-awareness. I eventually arrived at Point B, or acceptance, when I learned to fashion new dreams that incorporated a more integrated identity.
Some of what occurred on my way to acceptance of a new reality felt murky or unclear at times—not everything, but an important, small percentage. To me, exploring the murkiness involved identifying the emotions connected to those feelings so I could process them in a way that helped me move forward. It was how I learned to recognize joy in the midst of any circumstance.
It’s important to note that this process is a lifetime endeavor. I also believe it isn’t exclusive to parents of children with disabilities; however, our experiences might be more intense.
BACK TO TOP »
How did you come up with the title Involuntary Joy?
The title sort of evolved. When I began writing nearly a decade ago, I would tuck my finished essays or journals into a folder titled, “Defining Moments.” As the collection grew, I could tell that I was attempting to chronicle life experiences that were connected to something bigger. They were the experiences most responsible for shaping who I was. Eventually a story began to form with a beginning, a middle and an end (for now). The story was about who I’d become because of Stross. It was about lessons he’d taught me—lessons that I’d have never willingly signed up to take. When a friend suggested I use my name in the title, the word “involuntary” seemed like the most accurate descriptor. My lessons about joy—and Joy—have been as involuntary as breathing.
BACK TO TOP »
What do you hope readers take away?
It depends on who is reading. If it’s a family member of a person with a disability, I hope they feel less alone. The feelings and experiences I’ve described in Involuntary Joy won’t fully mirror their own, but I believe the process of self-discovery is the same. When confronted with a life-altering circumstance, we all can build on our strengths to overcome our weaknesses. And we can all rely on faith, as we know it. I hope these readers are encouraged as they connect to our family’s story.
If the reader is someone who only knows life from an able-bodied vantage point, I hope they further develop their capacity for empathy. I hope the book gives them a reason to look at a disabled individual’s life with more regard for its inherent power and beauty.
Finally, I hope every reader is reminded that life is full of opportunities to experience joy—even in the most unlikely times and places. I truly believe it’s possible to find joy in the midst of all life circumstances. We simply need to find a way to keep pushing forward and accept joy as it comes. That requires hope in a future. I’ve learned that hope does not disappoint.
BACK TO TOP »
Why did you decide to self publish?
I wanted to honor the story I’d recorded by printing it but finding a publisher felt overwhelming. That task was pitted against the full-time demands of parenting and the part-time demands of my career. When I allowed myself to think about self publishing, the whole project suddenly moved closer to reality. I felt myself asking, “Why not?” and then avoided providing rebuttals.
Self publishing allowed me to manage the process while living a metaphor of interdependence. To accomplish my goal, I needed to rely on the help of friends who served as manuscript readers, consultants, editors, graphic artists, photographers and more. Involuntary Joy became the best kind of collaboration—an example of how incredible life is when you don’t try to go it alone.
BACK TO TOP »
What did you learn about yourself while writing?
That I love writing. I think that putting words together feels a lot like connecting dots. The process requires connecting ideas by using words and phrases. I love the feeling of wonder that comes after the last dot is connected: “Well, I’ll be…look what just took shape. Did I do that?”
I’ve learned that the discipline of writing requires making time for open thought or living in a way that keeps your thoughts open even when you are not writing. I discovered that I think about life the same way that I think about writing: Insights come after you’ve connected the dots.
BACK TO TOP »
Would you change anything?
I can only speculate about what this question is really asking. There is a reason expectant parents answer, “We just want healthy,” even if part of the sentiment is left unspoken. Having a baby born with disabilities carries undesirable life-long responsibilities. My husband, Mark, and I have lived the reality of having a baby that isn’t regarded as “healthy” at birth. Sometimes people say, “But I bet you wouldn’t change anything, would you?” I agree that I wouldn’t change what my experiences have taught me, but I’d certainly forego every last insight so that Stross could live free of physical limitations.
BACK TO TOP » |
