Everyone who has a non-speaking child knows the phrase, “love needs no words.” Families like ours live that phrase. Henry works hard to communicate his needs with us. We really try to listen closely, read his cues, and decode his body signals to meet those needs. Think about an average day. How often do your conversations focus solely on meeting needs? If I could have one genuine conversation with Henry, I’d treasure every nuance in his voice…his pitch, his tone, and the little southern twang he had before he lost his words. I’d ask every question under the sun and soak up the opportunity to get to know him in a deeper way.
Do you know how much I love you?
What do you want more than anything in the world?
How can I be a better mom to you?
Do you feel lonely when you choose to spend so much time in your cozy corners?
Do you feel safe?
What has been the best day of your life?
How much do you understand?
Do you know we’ll get to have a real conversation on the other side of this life?
Every once in a while, the Heavenly Father will bring someone into our lives who can give us a glimpse of what Henry may be thinking or experiencing. A neurodiverse contractor took an interest in Henry and told me a little about his childhood. He shared how hard it was when he wasn’t allowed to stim. I’m assuming his caregivers believed all stimming was a behavior that should be corrected. If stimming doesn’t become injurious, I’ve always let Henry stim to self-soothe however he wants. One conversation with this man gave me such reassurance in that choice. He was a voice for Henry. A neurodiverse friend explained overwhelm-vs-pain to me. (I’ve been struggling to determine if Henry is overwhelmed or in pain when he covers his ears.) Five minutes with this friend gave me a deeper understanding of overwhelm, and a new strategy to help Henry cope. He was a voice for Henry. Then, Angela & James Wade stepped into our lives. Their unique experiences allow them to relate to Henry in a way that I can’t. You see, I’ve been with Henry through every step of his journey. I love him. I support him. I sympathize with him, but being on the same path doesn’t mean we are experiencing it the same way. I don’t know what Henry’s walk looks like through his eyes. The Wades have given me snapshots of Henry’s perspective and the priceless gift of empathy.
Angela and I met in a homeschooling group. I immediately noticed that she would always come and say hi to Henry, regardless of his inability to say, “hi” back. She saw him. As I was monitoring Henry for falls, injuries, overheating, medication schedules, and elopement she picked up a ball I hadn’t realized I was dropping. She would quietly initiate play between Henry and other children. She would encourage them to let him have a turn on a slide, or help him get on a swing with them, or encourage them to say hello. Angela probably never thought twice about this kindness, but it spoke volumes to me. Her children are typically developing, but she moved with the calm and patience of a woman who had spent a lifetime advocating for children like Henry. Then, she introduced me to her husband, Jim.
Jim has had a traumatic brain injury, and he’s written a book about his experience called “The Broken Seam.” He shares a special connection with Henry…bonded through trauma and grit. As I pored over the pages of Jim’s story, I began to hear echoes of Henry’s voice…of unspoken feelings I may have missed. Jim recounted the “invisible fight of excruciating wars inside his own body.” Suddenly the terms we use to characterize Henry’s challenges like “fatigue,” “word retrieval,” and “sensory overload” took on a new meaning. It wasn’t until Jim explained his experiences that I truly understood the extent of exhaustion and brokenness Henry must endure at times. Jim described the frustration and humiliation of putting out a maximum effort in therapies that resulted in “barely perceptible twitches of his leg or a vowel falling clumsily from his lips.” Henry is a warrior but as much as I love him, I can’t relate to him the way Jim does (a fellow overcomer). I don’t have that shared experience or insight. I’ve always believed knowing a diagnosis is the first step in providing the best care for a loved one. I know all the diagnostic terms, but Jim taught me something more important…understanding. His intimate personal account of living those terms gave me understanding. That was a perspective I needed to be a better support to Henry.
The story of the Broken Seam continues! Jim is releasing his second book tomorrow. It’s entitled “No Compromise” and he has dedicated it to Henry. This book is one of the most profound and powerful books I’ve ever read. If you come from a special needs family, if you work with the special needs community, or if you are an advocate then this book is a must read. Jim and Henry both have rare histories, and rare is exactly as it sounds…unique. Rare can be isolating. Living in Henry’s diagnosis can be lonesome. Entering churches or conversations with Christians who don’t have an accurate understanding of theology surrounding disability is isolating and, at times, hurtful. In “No Compromise” Jim writes about “the church’s uneasy relationship with disability-from the wheelchair ramp around back to the prayer circle that treats your body like a problem to be solved.” (I need to point out that Henry’s church is a shining example of how inclusion should look in a church home. The Lord knew we needed to find this church before we had Henry.) There are, however, innumerable encounters we’ve had with Christians who have left us feeling unworthy, unloved, and shattered. Reading “No Compromise” was healing for me. It translated the cries of my heart into words. I was suddenly not alone, disconnected, isolated, or rare. I was seen and heard. I’m going to sound like a 2nd grade teacher for a second, but I had a lot of big thoughts and feelings I couldn’t put into words. I wonder if that’s how Henry feels sometimes. Does he feel misunderstood or isolated because he can’t share his big thoughts and feelings? Love doesn’t need words, but it sure is nice to have an advocate speak up when words fall short. Jim’s writing not only managed to give my son a voice, but his beautiful book gave me a voice. I will be forever thankful for “No Compromise.”
"Speak up for those who cannot speak for themselves; ensure justice for those being crushed." ~proverbs 31:8