An interview with Catholic author Jeannie Ewing about her service to families affected by a diagnosis of Apert Syndrome, and her new book, Waiting with Purpose.
By Lori Ann Watson
Jeannie Ewing is the author of several books, including From Grief to Grace and Waiting with Purpose, and she also runs the website Love Alone Creates. She talked with us about her writing, her motivation for starting Love Alone Creates, and the life event that gave rise to her mission of service.
Jeannie, your website, Love Alone Creates, has become a source of encouragement and inspiration for families who are faced with Apert Syndrome. Can you tell us what inspired you to begin this effort—and what keeps you going with it?
I started the website as a blog mainly because I was answering the same question to different people, all about [my daughter] Sarah’s complex medical diagnosis [associated with Apert Syndrome]. It was a way for me to ensure that my response was coherent and consistent for all. It was also less daunting.
In any case, LAC evolved into a website complete with videos, advocacy information, and more personal reflections over the past 5 years. Today, I continue because I have a steady stream of people who contact me from all over the world who tell me that they happened upon my website and were inspired. Most of these are fellow Apert families who are looking for support and to make sense out of the mystery of Apert syndrome.
What should teachers know about how Apert Syndrome affects children and their families? What are the most important things for us to understand?
The most important message for educators regarding not only Apert syndrome but all disabilities is this: talk to families and find out how to make the disability less “scary” for kids and other families. I firmly believe that we fear what we don’t understand. This is the basis of much bullying in schools. Kids are intimidated by the facial differences of those with Apert, but if teachers allow parents to visit classrooms and do a fun and informal presentation to students, then it makes the disability less strange. We present our kids as people first, people with disabilities. Their disabilities do not define them.
It’s important for teachers to be vigilant about ways kids with disabilities are being ostracized or bullied. It could be subtle ways or perhaps seeing these kids sitting alone at lunch, being overlooked for a group project, etc. Those are prime opportunities for the teachers to address the class as a whole, and they could incorporate rubrics about diversity regarding disability education/awareness.
Your newest book, Waiting with Purpose: Persevering When God Says “Not Yet” speaks to a great need in our time and culture. In your research for this book, what did you learn that you feel is most valuable or relevant for us in our world today?
Waiting with Purpose was so refreshing to me. I learned several points that I’d never before considered, things that I’d never learned about in any other theological or philosophical work. The main works that contributed to my research were Vanstone’s The Stature of Waiting, Pieper’s Leisure: The Basis of Culture, and Nouwen’s The Spirituality of Waiting.
First, thinking about waiting, we have to consider the reality that our world is very hostile to waiting. We are an impatient people. We desire instant gratification, and in many circumstances, are granted it. Think technology and how super-fast everything is, how accessible information is within seconds. Therefore, waiting is seen as wasting time or drudgery. We busy ourselves with busyness.
Pieper pointed out that, despite the fact that leisure (not necessarily relaxing, but his definition was more about reflecting or pondering life) is frowned upon in our society. It’s believed to be some sort of frivolity to engage in reflection. Yet Pieper writes – with urgency, I would add – that leisure is not only important but necessary for society. Leisure happens when we wait.
Waiting provides countless opportunities for us to grow in grace. Sometimes God wants us to grow in trusting Him during times of uncertainty or when nothing seems to be moving forward. Maybe the lesson is endurance, perseverance. Maybe it is to become more patient in our suffering. Virtues are often hidden in these times of waiting if we enter into it by listening to God’s heart speaking to our own hearts.
Finally, it’s not necessarily being productive or working that contributes to our value or inherent dignity. We know this but forget it or don’t live as people who believe this truth. Rather, our purpose in this life is complete only after we’ve undergone our own passion, much like when Jesus completed His earthly mission by exhausting His last breath with the words, “It is finished.”
Has writing Waiting with Purpose helped you in your own life, in those times of waiting we all experience?
I’ve realized that everything is deliberate. When I feel stuck, I need to redirect my focus toward God. “What are You asking of me right now? What are You trying to teach me?” These are questions I ask in prayer instead of getting really restless or worrying about feeling stuck.
Do you give school presentations? If so, where should teachers contact you?
Yes, I do! I have a presentation used for high schoolers but plan to tweak it for younger kids/elementary age as Sarah enters kindergarten next year. Feel free to visit my website, lovealonecreates.com, to use the “contact me” form with questions, comments, or to schedule speaking engagements.
Lori Ann Watson teaches, homeschools, blogs about Catholicism, and almost never gets caught up on laundry. She writes from North Central Florida.