I had the pleasure of speaking with my friend Kelly Mantoan about her new book, Better Than OK: Finding Joy as a Special Needs Parent. Kelly is the founder of Accepting the Gift, an apostolate for Catholic parents of special needs children, and this book is the culmination of years of reflection and peer mentorship based on her own experience as mother of two children with Spinal Muscular Atrophy (SMA), a genetic, degenerative neuromuscular disorder.
What motivated you to write this book?
As a blogger [at This Ain’t the Lyceum], I shared stories about our family and my sons. I was getting a lot of the same questions over and over again, so I thought it would be a lot better if I wrote it all down as a book. It allowed me to give more information than what I shared on the blog, and use our experience to answer the most common questions. I wanted to help people who had gone through a lot of the same things that we had gone through.
What people, prayers, or tools helped you make sense of your own family's experience?
Honestly, hindsight was the most important thing. I didn’t deal with boys’ diagnoses very well, for a long time. I was very resistant about talking to other special needs parents for a long time, but ultimately that was one of the most helpful things. Later, talking to disabled adults with SMA was also very helpful—it gave me a whole new perspective on the kind of future that my sons might have.
As far as prayers, I was always very drawn to Our Lady of Sorrows. I turned to Our Lady from the very beginning. It felt like nobody understood what we were going through, but of course, Mary does. And I continued going through the motions of my faith even when I wasn’t feeling super Catholic. I still received the Eucharist, I still went to confession. So I was still receiving those graces, even though I wasn’t feeling it.
In your own book, you mention Fr. Benedict Groeschel’s book Arise from Darkness. Can you speak about how it helped you turn the corner in your grief?
I was at rock bottom when I read that book. The whole thought of going to speak to a therapist for myself, making even one more appointment, was totally overwhelming, but I always like to read. I saw the title and thought, “That’s literally how I feel.”
Fr. Groeschel shared stories of people who had experienced real, deep tragedy. Everyone in my life who was trying to comfort me hadn’t experienced the depth of suffering I was going through; their advice wasn’t relevant to the level of my pain. But the people in this book had gone through those things, and Fr. Groeschel’s advice was appropriate for my type, my level of pain. Reading it gave me a whole new framework about how to move forward. It was a slow ascent and a lot of work, but that book was a turning point.
You begin your book by outlining the classic five stages of grief, describing how you moved through them after Fulton’s diagnosis and how other parents might too. At one point, you mention it’s natural for people to move back and forth among the stages. Has that continued to be true, or have you landed in acceptance now?
I’m definitely spending most of my time in acceptance now. Even when we’re faced with heavy, hard things, like when Fulton had major spinal surgery, I don’t go back through all the stages of grief like I used to. I don’t approach scary moments with the same worry and fear—I’ve moved past that, and my faith is stronger.
When you’re starting out, you feel like you will always be stuck in those early stages of anger and depression. You have to allow yourself to move through those stages, to experience them fully, but not to stay stuck there.
Each chapter in Better than OK suggests a different virtue that special needs parents can cultivate in order to thrive. Like you said earlier, that understanding arose with a lot of hindsight. What’s the one thing you wish you had understood at the beginning of your journey?
At the beginning, I wasn’t ready to hear anything from anybody, I just wanted to be miserable. That’s part of the initial shock. I wish I’d known it’s okay to grieve and go through that whole process. No one explained to me that you could feel those things in relation to something that wasn’t a literal death.
Friends and outside family have to allow parents to go through that process—don’t tell them to be happy or everything’s fine. You need other parents you can turn to in your grief. Later, you can talk to other supporters and be ready to hear and accept that encouragement.
Better than OK: Finding Joy as a Special Needs Parent by Kelly Mantoan is available now from Our Sunday Visitor. Buy it here on Amazon.