PROLOGUE: HAPPY BIRTHDAY, STROSS
Each May our neighbors emerge from their homes to groom flower beds. I stare at my previous year’s attempt to connect with nature and reject any notion that pulling weeds is a spiritual endeavor.
If the weather is even remotely warm (to an Iowan, 50 degrees after a string of subfreezing days is hot) my husband, Mark, bounds outside like a puppy left near the door too long. He begins his outdoor adventures by sweeping out the garage and organizing its contents. The highlight of this activity is his inventory of the pretreated lumber and wood decking. If he finds enough, he will launch a campaign to justify adding on—for the fifth time—to the tree house in our backyard. For some reason, we manage to begin each year with a fresh supply of leftover decking.
The tree house is already a wonder. With 48 feet of ramps; a patio deck that’s bordered by benches that seat 50 people; a climbing tower; and a caged, second-story loft that’s attached to the tower by a bridge, the tree house dominates and defines our family’s time outside. The tree house is decidedly more than a tree house. It symbolizes social equality and freedom for Stross, our oldest son, who can tear up and down its ramps at a speed that makes his wheelchair shake.
So when May arrives Stross and his brother, Skye, four years his junior, invent reasons to stay outside regardless if school is the next day. The countdown to summer has begun.
Something entirely more important happens each May, though. Stross turns another year older. After 16 years of his birthdays, I know what to expect. I know sometime that morning, amid the normal festivities of opening presents, dressing for school and discussing birthday treats, I’ll find time to be alone to cry.
I look forward to these tears. Through them I relive my son’s entire lifetime beginning with the traumatic day of his birth when I learned I’d be the mother of a child born with birth defects. Once the tears start, I’m ready for my annual motherhood performance review. With vulnerabilities exposed and raw emotions at the surface, I test my faith by inviting God to sweep in and meet me intimately just as he did on the first May 5th of Stross’ life.
During our birthday time together, God and I review promises made and how they have been fulfilled. Together we cry about the realities of a life that seems overwhelming at times.
Stross has had 16 birthdays now. But it is his fifth birthday I recall best, for on that day I learned how subjective reality can be.
• • •
May 5, 1996, started as a hectic day, like many had since Skye arrived nine months before. My standard morning routine involved securing my youngest son into his infant seat and buckling my oldest son into position. After I picked up Stross’ friend Anthony, the back seat of our blue Honda station wagon was full of boys—as it was every Monday, Wednesday and Friday. Yet this day wasn’t like any other preschool day. This day was Stross’ birthday, his golden birthday, according to my Grandma Delma, because he had become 5 on the 5th.
Stross knew he would get to wear a birthday crown with his name and age on it. According to Happy Time Preschool tradition, Stross—the Birthday Boy—would be first in line for everything. He would choose the game at playtime and be the center of attention when “Happy Birthday” was sung just for him. Then after the song he would blow out five candles on the classroom’s dinosaur-shaped, all-purpose cake; and every boy and girl would eat the sprinkle cupcakes he had helped me decorate the night before.
What more could a 5-year-old ask for?
Stross could barely contain his excitement as our station wagon moved into position behind the other mom and dad drivers in Happy Time’s drop-off line. While two positions from the front, Stross began to call out to the teacher whose task it was to greet the children and insure each safely hopped out of the cars, pickups, or mini-vans that had brought them.
“It’s my birthday,” he chirped to her through the closed window. Anthony, Skye and I had heard this refrain three times during the last quarter mile of our morning drive.
“Today’s my birthday.”
When our car finally stopped in front of the long sidewalk that led to Happy Time’s little red school building, Stross’ body language told me in no uncertain terms to hurry up. He sat rigidly at attention wearing a smile that turned his cheeks into hard, plump mounds. Stross’ arms bent at the elbows, his hands pointing forward while each fully extended finger individually wiggled in a fluctuating pattern. His shoulders pushed down making his neck appear longer and his jaw tight. Stross could not get out of the car fast enough; and since he could not physically get out of the car without my help, I worked quickly to match his animated state.
Fortunately for Stross our disembarking procedures were well rehearsed. Anthony quickly unbuckled himself, climbed out from his spot behind me, and headed for Happy Time’s door. Stross had already unbuckled himself and nearly fell out as I opened his door. His legs caught on the seat in front of him, holding him in position.
Full-length leg braces and a walker were part of his regular school attire. They enabled my short-statured son to proudly stand eye-to-chin with his peers. Using them he could independently maneuver throughout his two and one-half hour school day. But with his mobility came a sense of confinement. Braces prevented Stross’ legs from being in any position other than proper alignment. When he sat, Stross’ feet had to be directly in front with his toes pointed at a rigid 90 degrees. His ankles, thighs and knees always formed parallel lines. The plastic, Velcro®, leather and metal braces that held his lower limbs were visible from the base of his shorts to the top of his shoes.
Stross grabbed his Aladdin school bag while I lifted him out of the car. He handed me the bag, then I set him in his walker and on a course for the door. A quick glance at Skye assured me he would wait cooperatively in his car seat until I returned for the treats.
Happy Time’s sidewalk presented its usual hassles. Because it was constructed at the exact width of Stross’ front walker wheels, any variance left or right meant a drop off into the soft grass. He had become adept at regaining his footing, and most days I only needed to help lift his front wheels back into place two or three times. Some days—depending on the weather, my mood and Stross’ concentration level—the sidewalk seemed incredibly long. This day was one of those. Birthday eagerness caused a record number of side trips.
I hated the sidewalk more than ever this day.
Happy Time’s doors also presented logistical nightmares. There was one step up to the first door. Stross could lift his front walker wheels, hike himself up into the entry and then pull his back wheels up to the same level. Simultaneously I needed to reach over his head to hold open the inside door, only four feet away, allowing the first door to fall shut on my backside. Sometimes either a teacher or another child, usually Anthony, acted as a door stop for us; but the hectic activities of morning drop-off often left Stross and me fending for ourselves.
A ledge at the threshold of the second door also required another lift-and-step combination. Once inside, both Stross and I relaxed a little with a familiar feeling of accomplishment.
After placing his school bag on his octopus-labeled hook, I left Stross propped inside his walker, wrestling with the task of hanging up his coat. The rest of the 4- and 5-year-olds were either hanging their coats or busily playing with toys. The teachers clearly intended to occupy early arrivers while draining as much energy as possible before the school day officially began.
I also noticed the teachers had set their most popular indoor toy, a portable plastic slide with four rungs on its ladder, in the center of the room. I hated this colorful nuisance for an admittedly biased reason, the same reason I hated the room’s elevated reading loft. These extra-special play areas were physically off-limits for my physically disabled son. If either Mark or I could spend the day assisting Stross, I was certain I’d hate them less. We often served as our son’s legs and feet, especially Mark. We’d carted him on many pieces of playground equipment, taking pleasure in his obvious enjoyment. His laughter never failed to reward our efforts, and introducing new experiences assured us the opportunity to see his face brighten with a new awareness of the world we shared.
Of all the playground items he’d tried, slides were Stross’ clear favorite. That’s probably why I had such a visceral reaction to this one. We couldn’t hang out at school with him to take him up and down this slide. He was growing up, and our goal to help him learn independence had crashed into our desire to help him fully experience the world. He could not independently slide down the Happy Time slide.
Ever since Stross began attending Happy Time, I had struggled to come to terms with that slide, an object that only 15 of the 16 kids in this class could use. I fought against the hurt I felt knowing that the left-out child was my son. The prospect that I’d ever successfully overcome my hurt and anger was dim. The school year was nearly over, and today I had more pressing matters. The sprinkle cupcakes and chocolate milk needed to be delivered.
As I jogged back up the sidewalk, I decided to shift into survival mode and protect the knot in my stomach with subdued, righteous anger. With goodies in hand, I cooed some mother-speak to Skye, hit a switch to lock all the car’s doors and then shut the hatch.
The Happy Time doors were easier to negotiate now, even with my left arm balancing a tray of cupcakes and my right hand clutching a gallon of milk and a grocery bag of Batman napkins, plates and paper cups. Mrs. Leland took the goodies off my hands, and I turned to locate Stross for our quick good-bye. After disposing of his coat, Stross maneuvered his walker over to stand at the base of Happy Time’s portable, indoor slide to watch six other children frantically engaged in an activity he could not do. One after another, children were sliding down and then clambering into position for their next trip up the slide’s ladder.
The instant I saw him, the reality of my life slammed into divine focus. I was ill-prepared for what I saw; I needed time to emotionally catch up—time to sort through what was true. I felt uneasy because what I saw did not conform to my perceptions about the world and how people in the world should be. I had emotionally protected myself from something I perceived as a threat to my son. Because the slide’s existence hurt me, I assumed it hurt him as well. Because I preferred to avoid feelings and experiences that might hurt me, I assumed Stross reacted that way as well.
Swoosh. Down came Anders. Swoosh. There went Holly. Swoosh. There went Scott with Nate fast behind. Again and again they passed by while Stross, legs planted firmly and willingly in place, stood at the bottom and laughed his wonderful, infectious laugh. With each child’s ride, Stross’ laugh got a little louder, a little sillier and a little more joy-filled. If the emotion of joy had a face, it was his.
My son, who was unable to fully use his lower limbs because of life circumstances, was in the thick of it, face-to-face with an inanimate object I’d nearly allowed to consume me. Not only that, he had found a way to participate, experiencing the activity to its fullest.
I couldn’t deny what I saw. Joy radiated from his face, undeniable joy. Stross’ whole body emitted joy in its purest form while I held inside me a mix of rage and despair.
My stomach emptied into my heart, then lodged in my throat.
Going over to Stross, I leaned down to kiss him good-bye and forced out words that would assure him his dad and I would be back in time to watch him blow out the candles and share his cupcakes. He was too busy laughing and enjoying the children’s antics to acknowledge my departure.
By now Stross was nearly doubled over in laughter, tightly gripping the red handles of his shiny, metal walker so he wouldn’t fall. The children, caught in the wake of his exuberance, began to slide faster and with greater drama. Stross rewarded their performances by accentuating his own mirth. His face, with eyes squinted and tears dancing in the rim, couldn’t have worn a larger smile.
Tears brimmed my eyes as well. They threatened to fall even as the Happy Time doors closed behind me. The sidewalk blurred, and I struggled to get my keys in the car’s door lock. Skye’s head turned to follow me into my seat. He was safe and sound and content.
I was a mess.
I wasn’t certain I could drive safely but decided I had to leave before being spotted by another mother or father. I’d risk my life before risking embarrassment or pity. Driving away while crying seemed a more rational act than sitting in a car to cry about a slide, especially since I wasn’t fully certain why I was crying anyway.
My oldest son had turned 5 years old. He had lived to celebrate his fifth birthday. In spite of nine surgeries, a few hospitalizations unrelated to surgery, countless childhood illnesses, one broken bone and hundreds of trips to doctors and therapists, Stross had done it. He attained the magic age of kindergarten readiness.
Somehow that slide undermined all we’d accomplished together, boldly reminding me my son wasn’t normal. No matter what therapy goals we’d achieved or medical milestones we’d crossed, my son could not do the simple, everyday things his peers could do.
My rage built with every house I drove past. It fought to get out of my body through my throat. I didn’t want to scare Skye with audible sounds of anguish, so I silently screamed about what the slide represented while streams of tears cascaded down my cheeks.
Injustice, inequity, ignorance, contempt, apathy, insensitivity.
Damn that slide. That stupid, stupid slide. Banishment from Happy Time or destruction, that’s what that slide deserved.
I was beyond angry, and to my horror, a portion of my anger was directed at Stross. Why didn’t he hate that slide? Of all people, didn’t he care? Couldn’t he see the injustice? Didn’t he feel as trapped by his life as I did? Didn’t he hate the fact life was anything but fair?
If he didn’t—if he couldn’t—he should. What happened to him wasn’t right.
Stross should have the right to slide down that stupid slide. He should be able to walk to the ladder, climb each rung, fling his legs out in front of him and throw himself haphazardly down it. A 5-year-old should be able to experience the thrill of sliding down a slide on his own, especially on his birthday.
The drive home from Happy Time Preschool took less than three minutes. My rage only lasted two. At some point I acknowledged my rage as renewed grief; and by the time I pulled into our driveway, anger had been replaced with something else, something inexplicably tied to Stross’ face. I could not shake the image of Stross’ face. It told me he had gone down the slide. In fact, he had gone down more than anyone else.
Stross, as only he could, had vicariously experienced the thrill of the slide. With every child that zoomed to the bottom, Stross had been there for the ride. He felt it, and if possible, enjoyed it even more than they had. He had not avoided the obstacle. Instead, he had stood at its base, taken in all the experience offered, and been rewarded with joy.
Stross’ joy was undeniable, inescapable and transforming.
I had attempted to mask fresh grief with anger, and Stross, once again, had led me through the grief and anger to joy. He helped me process my pain.
Explaining how the transformation took place may never be possible. I believe I was unable to forget Stross’ face that morning because its fullness was singed into my soul. Somehow his face, as it had thousands of times before, pointed me to the beauty that existed in that moment in spite of everything. Stross’ face was my invitation to rid myself of emotions that threatened to consume me.
I was led to pure joy instead.
Manifested in Stross, joy became a unique combination of awe, elation and glee. The awe I felt was for a Creator who could fashion such an incredible human being. The elation I felt was for the taste of pure joy my son had served in celebration of his fifth birthday. The glee I felt was for the privilege of accompanying Stross on his life’s journey. On that morning my tears, first shed in anger, frustration and self-pity, transformed into tears of silent gratitude.
And then I acknowledged a voice that seemed to speak directly to me, in tones that reverberated from deep within.
“Your son turned 5 years old today, Joy. I can help you be like him when you grow up.”
I first encountered Stross’ link to spiritual insights on May 5, 1991, the day he was born. Now each of his birthdays gives me a reason to keep the appointment I’ve made for my annual reality check.
As I’ve learned during the balance of each year, my most intense periods of learning are not reserved for birthdays alone. They have also come in doctors’ offices, hospital rooms, classrooms, grocery stores, office hallways, shopping malls, church aisles and at my children’s bedsides. I’ve also discovered the lessons arrive unannounced and usually are not welcome. They have uprooted my family, magnified the dynamics of my marriage and challenged my sense of self. But they have always resulted in joy—involuntarily so, but authentically real.
As I’ve grown, I’ve learned to appreciate others whose lives have given them “God vision” and “God ears.” I’ve even grown to understand how my way of relating to the world through a prism of faith isn’t a prerequisite for others’ spiritual insights. And the way my life finds focus may not be how it happens for someone else, for I’ve witnessed others celebrating moments of enlightenment that have occurred outside my lens of faith. Therefore, the God of my faith might not be someone else’s process to spiritual growth.
I understand that now.
But while my manner of interpreting life may differ from someone else’s, I believe we share a multitude of things in common. In particular a human condition that has inherent processes for discovery such as understanding wrought by pain, renewal shaped by acceptance and rebirth born of tested faith.
Regardless of who we are or how we got where we are going, it seems we are each invited to follow a path of love that points to life.
I’m just deeply grateful for a love that connected me to the power I regard as my Creator—God—in a way I could never have comprehended before becoming a mother, especially Stross’ mother. Welcoming him into my life has brought me insights I did not know I wanted and joy I did not know possible.
How I got to this point is my story, my Involuntary Joy.
After 16 years of life with Stross, I can hardly remember who I was before his birth except for what I captured in writing.
My last memory of life BS (before Stross) reflects innocence. The scene could have easily been taken from a family television drama. Mark is dressed in surgical scrubs and standing over my swollen belly. His eyebrows are raised in anticipation with the corners of his mouth barely containing his excitement. I peer over my burgeoning waistline and look at a fetal monitor racing in time to the rhythm of our baby’s heartbeat. Our first child is about to be born.
I remember saying a silent prayer for strength and letting a private thought slip out.
“Sunday is a good day to be born,” I said, proud of a hidden person who displayed an uncanny sense of timing. My pride grew more intense after he drew his first breath, after we learned the full scope of the gift we’d been given.
Until then I had not known, in any rational way, that the child who’d formed in my womb was mis-formed. I had no idea his life would be full of medicines, surgeries, daily therapies, insurance battles and anguish over inaccessible places. Neither could I have imagined the joy in which he’d live every moment of his waking life or how he’d be able to impact someone else’s life simply by living out his.
Maybe if I had known, my more naive self would not have wanted to be his mother. If so, I’m glad I didn’t know.
While I had already established a relationship with the God who created me, I had not fully comprehended how pervasive this relationship could be until Stross arrived and entwined my life with his. After he arrived, I sensed his soul was already more open to God’s leading than mine. Many believe children arrive with a spiritual homing device unclogged by signals of a mortal world. By 26 years of age and without fully realizing it, I’d allowed a considerable amount of static to disrupt my own spiritual interface. So when life sent me a baby with special features, one with an undeniably pure connection to God, I latched on for dear life.
The succeeding years have been full of images and feelings—such a wide range of feelings. They arrive unannounced and are followed in rapid succession by things I can’t speak of or explain. Yet on each of Stross’ birthdays, I’ve come to the same conclusion: God continues to break into my life in countless ways offering to make sense out of all of it.
It’s incredibly beautiful.
It’s life—my life’s story enhanced by my son’s. And the best parts began the day of his birth.
Joy, a wonderful excerpt from your book. My daughter is embarking on the same journey as you, here in Iowa, with a beautiful baby girl called Emilia. She is also 26 as you were when Stross was born. Emmie is her first child. I struggle with understanding many things regarding Emmie and the challenges she and her parents will face. I want to write Sarah and John Henry a letter but am not sure what to say. My main thought is that perhaps God chose them to have Emmie because he knew that they would take care of and love her and be wonderful parents – which they are. This book will certainly help! Thank you.
Thank you for your kind feedback, Janet.
I understand your desire to want to say the exact “right” thing. In my experience, the best “right” thing has been to say nothing but “I love you.” The greatest power comes from simply being fully present on their journey and listening – love in action. Mark and I remember being frustrated that our parents felt they understood what we were going through when we knew they could not. We had ventured into uncharted territory. Or that friends wanted to be what we came to regard as “the voice of God” for us when we were having conversations with God they had never imagined having. Becoming the parent of a child with born with special needs is an isolating experience – one where it feels only God can understand. No outsiders. Watching our parents live through a experience with our child separate from ours magnified the intensity of this isolating pain sometimes. We could see how deeply they felt for us and our son. But the issues we faced – the decisions we had to make on our child’s behalf – were fully ours to make; and as much as they wanted to help, they could not. Reminding us we were loved and supported was the most helpful thing they did for us. One of the chapters in the book – “Rebound Pain” – attempts to describe the phenomena of realizing we had embarked on a parenting journey they would never understand and how that impacted our relationship with them. I wish you all – you, Sarah, John Henry – the best as you await Emilia’s extraordinary birth. Each one of you will experience a profound awareness of the power of life – beyond what you can imagine. Many blessings as you continue on this journey – and innumerable moments of involuntary joy. I would love to know when Emilia is born. Feel free to let me know here or on my Facebook page, Joy M. Newcom, Author.