Luke was two when he realized his mommy was different than other mommies. One day after a shower, before I put on my leg, I sat on my big bed with Luke. He crawled over to me, and I started to tickle him. His unvarnished giggles filled the room like a chorus of singing angels. I started to move my naked stump around, curious about how he might react. Since my leg was cut off right above the knee, I have a long stump. I’d often felt that it must look creepy to other people, but Luke just rolled over and exclaimed, “Mommy baby leg.”
I’d always hated referring to my residual limb as a “stump.” The word conjured images in my mind of trees being violently hacked down, my leg being whacked off. I liked the term “baby leg.”
I wanted to help Luke understand my disability, so I hopped into his room and grabbed the doll my brother’s family gave me a few days after Luke was born. When I’d opened their gift and saw a doll with a prosthetic leg, tears welled in my eyes. I was so grateful Luke had a doll that normalized his mommy’s body. I brought her to the bed now and took off her little plastic prosthetic leg. Luke pointed to the doll’s stump and said, “Baby leg!”
“That’s right. She has a baby leg just like I do.” That’s the term I would use from now on.
Changing the name of my residual limb didn’t bring back the function I had lost, but it did invite me to think about the new definition for myself that was starting to unfold before my eyes. I am a disabled mother. I had to figure out how to function as a disabled mother. I didn’t know another amputee mother. I didn’t know any disabled mothers. Ever since I’d lost my leg, I’d dealt with my amputation for my own sake, but now it was up to me to figure out how to manage the impact of it on Luke.
As had been the case for so many years, grief would be my teacher.
I’d stopped working one year after Luke was born and, after many months of spending my days solely with Luke, loneliness crept up on me. So just before Luke had his second birthday, I found a Mommy and Me toddler group for us to join, hoping we could both make some new friends.
Our first day of Mommy and Me was a warm September morning. I packed Luke up and drove to the playground, anxious about joining a group of women who already knew one another, but determined to widen our lives outside of our small home. On the north end of the playground was a building that functioned as a community center and was used for meetings and other gatherings. I made my way to the entrance and checked in with Lucy, the group facilitator who I’d talked to on the phone the previous week. I shuffled farther into the room, a wide-open space filled with children’s play things, and stood on the sidelines of the group of ten women, who were all chatting with one another. One woman finally opened the circle to me just a bit, and I tried to find a way into the conversation. Luke tentatively joined some boys who were playing with big blocks and quietly looked at them with the same uncertainty I felt.
At ten sharp Lucy rang a bell and announced in a singsongy voice, “It’s Circle Time, boys and girls. Come to the rug, please.” All the other moms found their children and scampered to a round colorful rug in the middle of the room and sat around the edges, echoing its shape. Oh great, I internally moaned, I have to sit on the floor.
There is always a moment in every group when my prosthetic leg gives itself away. Sitting on the floor would accomplish this for sure. Regardless of how relaxed the rest of my body is, my prosthetic leg sticks straight out like a rifle. Made of plastic and wood, the foot stays at a ninety-degree angle, even when my body is in repose. Whereas most moms sat “crisscross applesauce” with their child tucked neatly in their lap, I sat down with my left leg sticking out into the middle of the circle, and bent my other leg at the knee.
It was always hard for Luke to get comfortable in my lap when I sat on the floor. Because my prosthetic leg reached all the way to my hip, half of his “seat” was as hard as a rock. He settled in the best he could and gave me a smile. I noticed some of the other moms look curiously from the corners of their eyes and then quickly look away. A few children noticed the metal at my ankle sticking out the end of my pants, too, but without the reserve of the adults. One mom noticed her child was staring and tried to casually redirect her child’s attention. I shifted a bit to get comfortable and avoided catching the eye of anyone around the room.
Lucy, who looked to be in her fifties and who oozed warmth and comfort, welcomed us all to the group. “And we’d like to welcome new members Colleen and Luke into the group today. Thank you for coming.” The other moms around the circle nodded their welcomes.
Lucy led us in singing a child’s song about an elephant stomping around in the clover. The moms, smiles spread across their faces, sang along enthusiastically, looking at their children with raised eyebrows, an invitation to sing along. The children started singing, some quietly, others with equal enthusiasm. The tune was catchy and the words repetitive, so I tentatively sang along. Luke was more reticent and stuck to observing.
We sang about five more songs that first day, many which required hand gestures. I felt silly and self-conscious and marveled at the other moms’ unabashed participation. After song time, while Lucy and a few moms fixed a light snack, the rest of us followed the children outside to the play area. This was our chance to mingle and chat informally.
Over the course of the next month, women began approaching me more, and I them. We easily chatted about the ups and downs of mothering our toddlers. Some of the women had older children, and I tucked away their tips about the inevitable phases Luke would be entering.
Though I could talk about general parenting issues, I couldn’t talk to the other moms about how disabled I felt, about the loss of function I’d endured over the last few years. Experience had taught me people didn’t want to hear about the downside to being an amputee. Over the years, most new people in my life seemed to want only to see me mount the odds or, at the very least, look and act normal. So I tried to act normal with my new acquaintances, even though I didn’t feel it. I felt protective of my story, of my true self. I lived in secret terror that others would discover how truly disabled I was and think I shouldn’t have become a parent in the first place, so I dropped references about having skied, backpacked, or kayaked to prove I could be active.
While I could compare to any other mom on an emotional and intellectual level, on the playground my physical limitations became more pronounced. I couldn’t run around with Luke. I watched wistfully as other moms played a game of chase with their children. My heart broke every time I thought about how I couldn’t share the joy of running with my little boy. Even wrestling with him was a challenge because my prosthetic leg could hurt him.
Luke had already distinguished himself as an “observer” in life. He didn’t sing the circle songs until he had watched and learned them first. He looked at how the other boys adeptly ran around on the jungle gym before climbing, so I knew he was aware, on some level, of my difference, but he never indicated it bothered him. He treated me the same way all the other toddlers treated their moms: clinging when he was scared or tentative, and running away to play when he felt safe.
On the second visit to the Mommy and Me playgroup, when it was time to go outside and watch the kids swarm the play structure, I watched as Luke climbed and scrambled and I found it impossible to have a casual conversation with the mom standing next to me. I couldn’t focus on what she was saying. Fear for Luke’s safety gripped my heart. My pulse quickened and my breath started to come in shallow bursts. I excused myself from the other woman and sidled up to Luke just to be near him. I dubbed myself his “spotter.”
As he grabbed hold of the rung above him on the climbing cage, my sweat glands began working overtime. I quickly grew wet around my neck and under my arms. Why weren’t the other mothers over here with me spotting their children? Everyone needed a spotter, didn’t they? Especially if you were going to hang from a high bar or swing wildly across monkey bars that were just barely in reach? Especially if you were going to climb on top of the tube covering the slide?
By the time Luke and I got into the car to go home, I felt worn and old, like I could go to bed and sleep for a million years. After I got Luke in his car seat, I sat behind the wheel for a few moments and put my hand on my heart. I could feel it pounding. I’d intended to go to the grocery store when we left playgroup, but I was done for the day.
Each week required a true force of commitment in order for me to return and keep vigil over the playground. Each week I stood in front of the mirror at home before leaving for Mommy and Me and saw how I was not like the other moms. None of them talked about the fear I felt. I did not see terror in their eyes that I suspected they must see in mine.
One day, after we’d been attending the group for about two months, I was standing near the tube slide with a few of the moms when I saw a group of children gathered at the bottom, gently pushing one another to get to the opening. They were too little to see that at the top of the slide there was another group of children, Luke included, vying to be the next one to go down the slide.
One woman was talking about using time-outs to teach kids patience. “So I was reading an article in Mothering magazine about …” I couldn’t listen. Panic was rising in my chest as I imagined a child at the bottom of the slide getting a face full of shoes when the next child slid down. I quickly scurried over to monitor the slide activity.
“Hey, kids,” I said as I corralled the children at the bottom of the slide away from the opening “Why don’t you go up to the top and slide down. We slide down the slide.”
“No, I want to climb up and then slide down,” one of the girls said excitedly.
“But there are other kids at the top already coming down, so you could get hurt,” I tried to explain. I looked over to the group of moms engrossed in their conversation. They continued talking, unconcerned. Was I overreacting? I looked down momentarily and saw that my hands were trembling. I had to get the children to move. I decided I’d try to entice them up the stairs to the top of the slide with a contest. “Hey, look at this dinosaur head up here. Who can touch it first?” That did it; they all scampered up the stairs, vying to be the first, and my chest opened up again.
I just couldn’t stand how fraught this playground was with danger.
For the rest of that hour, I tried to hold my tongue and stand back, but when Luke grabbed the bar at the top of the slide and swung like a gorilla before plopping his butt onto the slide, I practically had a heart attack. An image of him falling and breaking his back came to me. I played out the whole scene in my mind: me running up to him and realizing he was badly injured. Luke reaching up for me in utter pain. Me yelling to a mom to call an ambulance. Luke crying and begging me to take the pain away. Me riding in the ambulance with Luke and calling Mark when we arrived at the hospital. Luke ending up in a wheelchair for the rest of his life.
Luke got up off the slide and raced to the swings.
“Luke, NO, honey. No swinging. You might get hurt.” My words caught in my throat. I turned to the women standing next to me and said, “I think I’m coming down with a cold. I’d better get home before I give it to all of you.” It was a lie. But I had to get off that playground.
Of course I understood Luke might get hurt. We all might get hurt. If anyone knew that, I did. But I had never felt this kind of abject, paralyzing fear before: the fear of my child’s imminent death. What did Luke hear in my voice when I forbad him to swing? What was I passing on to him when I hovered beside him at the slide? I didn’t want him infected by my dysfunction and yet I didn’t know how to stop it from happening.
I still saw my therapist Lynn occasionally when I bumped up against myself and faced peeling away another layer of the trauma that had informed my life. I planned to talk to her about my playground anxiety eventually, and then something happened one night that made me get serious about figuring out how to work with my increasing fear.
I was folding clothes on the couch. Luke was sitting in his chair eating Cheerios and drinking juice. In a flash, the way these things happen, he accidentally spilled his juice—just knocked it right off the table onto the floor.
Panic and rage flooded me so quickly I couldn’t catch myself. “Luke! That’s not okay!” I screamed, rushing over from the couch where I was folding laundry. And then under my breath, “Goddamn it!” I hurried over to the counter to grab paper towels, ripping them off with urgency, as if something—what, I didn’t know—depended on everything happening quickly. I rushed over to the table and cleaned up the spill with a vengeance, movements big and rough.
“I didn’t mean to,” he whined as he backed away from me, his eyes cast down, tears welling. His tears brought me back to myself. What in the world was happening to me? I moved over to him and gave him a big hug, fully aware how contradictory this must feel to him. Once minute I’m yelling, the next I’m hugging.
“Luke, it’s okay. I’m sorry I yelled. I know yelling hurts your heart. I’m so sorry.” This wasn’t the first time this had happened or only the second. I heard myself say those words too many times, but that night I wasn’t just in the moment, I was also observing myself.
I was so focused on preventing an accident, I didn’t know how to deal with this latent, frantic anxiety that lay just below the surface, nor did I truly understand its source. What I didn’t understand was why anything unexpected, any disruption, flooded me. What I did know was that in my attempt to manage the possibility that catastrophe was right around the corner, I had wound myself up so tight that Luke was probably starting to feel that he was the problem.
I couldn’t let this go on. I was hurting the very person I was trying to protect.
I made an appointment with Lynn as early as she could get me in after the juice incident. Sitting in her office, the walls lined with books, I asked her, “How can get rid of this hair-trigger panic and anger? I don’t even like myself anymore.”
Lynn probed. “What do you get anxious and mad about?” Even while giving examples of Luke’s and Mark’s minor transgressions and of the playground fiascos, I knew there was something deeper. Lynn had heard enough of my story by this point in our relationship and asked, “Can I tell you what I think?”
“Please.” It would be a load off my shoulders to feel I had an ally.
“I think you were expected to perform, literally and figuratively, too soon after your accident. Tell me, how did you feel standing on your high school stage three months after losing your leg?”
“Honestly, I was a jumbled mess of emotions, from excitement to anger.”
Lynn and I further explored the impact acting in the play had on me, as well as everything else that had happened so quickly after the accident, and how those experiences didn’t allow me to integrate the trauma into my brain—or my heart. I already knew this was true, but I was finally ready to loosen the armor surrounding my heart. “You can’t deal with your children’s humanity if you can’t deal with your own. Tell me, do you want to bring your children into this trauma or do you want them to live their own lives?”
“Well, of course I want them to live their own lives. I don’t want my trauma to be my legacy. But how? How do I let it go?”
“The first step is allowing yourself to be sad, to learn to live in and with your sadness. Though you’ve cried a lot, you constantly fight against being sad, like it’s something you can get out of you and then be done with for good. Colleen, I think you’re very sad.” She paused, looked down at her lap, and then looked up at me.
I felt suddenly naked. And tears filled my eyes. She was right. That was the big and small of every struggle I’d had over the past twenty years. I was sad. Somehow I’d gotten into my head that sadness equaled weakness. Sadness is one of those emotions that thrusts us into vulnerability, like being a freshly molted crab floating in the sea waiting for her fresh shell to harden. And for me being vulnerable was as good as standing out on that freeway again trying to flag down some help. When I was angry, I tricked myself into believing that I wasn’t exposed and didn’t need protection. When I was angry, at least I was in charge of something.
“What would happen, Colleen, if instead of leaving your sadness at the door, you invited your sadness to dinner? Make a place for sadness at your table.”
Well that’s a silly idea, I thought. And then I remembered an evening when I was five years old. I had invited Indian Joe, the imaginary friend I played with out in the backyard, to dinner. Indian Joe knew some of the Native Americans who had felled the large trees in our yard many years ago. He was a kind, gentle, and sad man. Mostly we walked around the yard holding hands and talking. I didn’t know why he was so sad, but I wanted to help him.
Indian Joe agreed to join us for dinner. When we walked inside, Mom was finishing the meal preparations and my older sister, Maureen, had set the table. I went to the silverware drawer and pulled out another setting and, since I couldn’t reach, I asked Maureen to reach into the cupboard for another plate. I took all of this to the table, pushed the plates and silverware over to squeeze in one more place setting. I went into the family room and dragged a chair to the kitchen table. Mom walked over to me, crouched down on her knees and asked, “Colleen, what are you doing?”
“I asked Indian Joe if he wanted to come to dinner. I’m setting him a place.”
“So he said yes?” she prodded.
I nodded. “I want him to sit next to me.”
“Okay, sounds good, honey.” Mom stood up and started bringing the dishes of food to the table.
I spent a lot of time with Indian Joe, and I desperately wanted for him to be real. Mom’s acceptance of him joining us for dinner made me believe that perhaps he was.
After we’d said our prayers, I put a piece of Shake ‘n’ Bake chicken on his plate and some iceberg lettuce salad. He smiled at me and said, “Thank you.” While the rest of the family chattered around the table, Indian Joe and I sat there quietly and I helped him eat his dinner.
Though Indian Joe left my life a few months after that, his presence had been real and made an impact. A scorning word or a sarcastic attack from anyone in my family about his existence could have quickly killed him off, but their acceptance of him gave that relationship strength and allowed me to keep him with me until I’d made it through that particular developmental stage.
I realized that I did know how to sit with my unseen companion, sadness. I was finally ready to have my new family welcome another member.
“What do you think, Colleen? Can you invite sadness to the table?”
“Yes. I can.”
Lynn had given me permission to just be sad. Sad was normal. And I needed normalcy—true normalcy, more than anything. I’d been striving for it for years. That night at dinner I felt a little silly, but I went ahead and added another place setting to the table, just as I had as a little girl. Luke was oblivious. Mark cocked his eyebrow and asked, “Is someone coming for dinner?”
“I know this is a little ‘out there,’ but I set a place at the table for my sadness. I’m inviting sadness into my life without apology or shame, and this is my way of being intentional about that.”
“Well, okay, then. Welcome, sadness!” Mark said and gave me a quick peck on the cheek as we brought the food to the table. I suspected he was as grateful for the chance to blatantly acknowledge my grief as I was.
I wasn’t born a good mother, I was becoming one. As Luke grew, so did I. Though I’d tried to pass as normal since the accident, I had always focused on appearing to be normal on the physical level. I was learning that normalcy wasn’t experienced on the outside as much as it was an internal experience. So, as Luke learned how to swing from the bars at the playground, I brought normalcy to his childlike moments by not catastrophizing his every move. As I was teaching Luke the safe limits of crossing the street, I was learning to accept my own limits; I couldn’t protect him from everything. As I wiped his tears of sadness over his small losses, I vowed to never “shush” him, to never give him the message that his sadness was a burden for me. And I learned how to mother him from love and not from fear, because I was also learning how to mother the part of me that was still lying on the freeway.