In a Perfect World
The Land of Between
By Leeanne Seaver, H&V, Headquarters © 2020
Every Sunday we went to lunch at my mother-in-law’s house, who is the absolute best cook in the world. Before the diagnosis of hearing loss, every now and then she surprised us with her unbelievable homemade, creamy and dreamy Tiramisù, but after the visit, she seemed to have lost all passion in the kitchen. It seemed as if everything and everyone surrounding me had lost its flavor, and I only saw empty eyes, grim stares and desperation over Jordan’s diagnosis in every face I turned to for support.
That precise moment was when I formed my bubble.
Jordan was so cute, smart, alert, attentive to everything around him; fast, mobile, agile, but he wasn’t sick. He threw a lot of temper tantrums due to what I eventually realized was communication frustration and he could be extremely stubborn. He couldn’t speak, but I always understood what he wanted and needed. It was almost a telepathic thing. When he wanted milk, he whined; when he was ready to play ball, he pointed his little finger at the ball. Every day he sped through the house on his little spinning walker and expertly navigated all obstacles. He had started walking at ten months of age, and the safest place to put him was in the speedy walker as I struggled to perform basic household chores and find some way to come to terms with the fact that my son couldn’t hear and hadn’t heard an “I love you” I’d said or a lullaby I’d sung since he was born.
For me, the elderly wore hearing aids, not a twelve-month old baby boy. The day after we fitted his hearing aids, which made this constant, horrible whistling noise, especially when he rested his head on his car seat or stroller, we went to the park for our usual walk. As Jordan was kicking a ball around, a little girl walked up to him, touched his cheek and asked me, “What are those things in his ears?”
I froze.
Her question was legitimate, a child’s curiosity is always utterly acceptable, yet there I was, frozen. I couldn’t find the words to answer her.
I picked up Jordan, hooked him into the stroller, and we left the park. At home, I put him in his crib, removed his hearing aids because the whistle was sending me over the edge, and stood in front of the mirror, screaming as pissed off as I’d ever been in my entire life – he couldn’t hear me anyway – “MY SON IS DEAF, MY SON IS DEAF, MY SON IS DEAF!”
I wasn’t pissed off about my son’s deafness, I was so angry at myself because I couldn’t find the strength to say the words I needed to say to answer that little girl’s question, “What are those things in his ears?”
How could I possibly raise my son’s voice if I couldn’t use my own voice to talk about his hearing loss?
– Jodi Cutler, excerpted from her new book, The Land of Between
For parents facing the challenge of raising a deaf child in The Land of Between, Jodi Cutler has provided a map. She shares transparently, humorously, and introspectively about her journey as an American repatriated to Italy where, on wobbly legs, she raised her Deaf son and hearing daughter. Her disarming frankness cuts straight to what’s true for all of us—the search for our own strength and voice, the courage to advocate, and the compassion to care beyond the borders of our own experience. This book is not only Jodi Cutler’s transcendent story, it’s the story of a global movement of parent leadership that’s changing the world for families with children who are Deaf or hard of hearing.
If it’s wrong to be grateful that Jodi was presented with these challenges that yielded such strength and purpose, then I don’t want to be right. Thank you, Jodi, for showing us the alchemy that turned your life into a deep well of wisdom we can all draw from again and again. I hope everyone reads this book—it’s available on Amazon. ~
H&V Communicator – Summer 2020