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DEEPER INTO DISABILITY

Few mothers experience constant bliss once the reality of taking care of a baby hits. As the weeks and months progressed, while I had many moments of holding Luke and feeling a deep connection to God, I was also still barely able to walk—and this impacted my ability to take care of him. I still couldn’t get enough of Luke. There wasn’t anything about him, not even his tongue, that wasn’t absolutely perfect and beautiful to me, but I also couldn’t get to him quickly when he needed me if he was in his crib and I was folding clothes in the other room. I couldn’t carry him down the stairway to the basement where Mark and I watched TV.

In quiet moments, I marveled that this perfect little being came from my imperfect body. But sometimes my love wasn’t enough. When Luke developed colic at three months, I wanted to comfort him as I’d comforted my nephew Brendon eleven years earlier, walking and bouncing him to help him calm down and to release the gas bubble that tormented him. But I was still managing life on my crappy pregnancy leg, and I couldn’t balance for long periods with a squirming baby in my arms. I was at a total loss for what to do for him. And although a part of me understood that I was facing what every mother faces—the longing and incapacity to take away pain from her child—I also feared that I might be missing something more than my leg. What if I hadn’t inherited the mommy gene?

I’d brought this baby into the world and now was powerless to help him.

My whole life I’d been a deep sleeper, so being up in the middle of the night was a challenge and lent itself to ruminations. One night, to foster calm for both Luke and me, I put on “Precious Little Angel” by Annie Lennox and held Luke in my arms, swaying to the beat of the music as I softly sang along. “Precious Little Angel, won’t you spread your light on me. I was locked up in the darkness, now you’ve come to set me free …”

I rocked and sang and cried, still so amazed by the miracle of his life, remembering how hard my pregnancy had been. Now it was dawning on me that this body of mine was going to hamper my ability to care for my child. My lower back began to ache deeply, so I shifted Luke to my shoulder and bobbed up and down. This offered temporary relief for him but increased the pain in my stump. Luke was gaining weight quickly and was a big boy, close to thirteen pounds at three months.

A tear slipped down my face. As my frustration and urgency to calm him grew, I could feel another layer of the grief onion peeling away. All of Luke’s life, I was going to bump up against limitations. My own pain was going to hamper my ability to soothe his. As Luke continued crying, I sat down on the sofa where I’d spent most of my pregnancy and pulled him off my shoulder so I could see his little distressed face. He was inconsolable and, to be honest, so was I. But by now I knew that speaking what was true for me often brought a bit of relief.

“Hey little buddy, I can’t keep walking you around this living room. I’m at the end of my rope here and I’m sorry. I’ll do the best I can for you, but tonight it looks like you and I will just have to sit here and cry it out together.” And that’s what we did.

Eventually, Luke’s colic disappeared and we all slept a little better. I often carried Luke around in a sling, but I was afraid of myself, unsure of my ability to protect him, should I fall. And then as Luke grew, the sling became more and more uncomfortable for him. At five months, he protested when I tried to put him in it, so I held him in my arms instead, usually slung over my hip—the side without the amputation—completely oblivious to the damage I was doing. My lower back developed a deep ache and I began to feel sharp pains in my knee. It was time to replace my pregnancy leg with something more permanent and functional. Because I was nursing, my pregnancy weight was melting off, but I would never fit into my prepregnancy leg again because of the subtle changes in the position of my hips and pelvic area caused by the pregnancy.

I saw my prosthetist Kirk for weekly fittings and adjustments for a new and improved leg. Through each week of what was a two-month process I dared to become excited. Once I have a regular leg again, I thought, I’ll get back to normal. I couldn’t wait to rid myself of the uncomfortable waist belt of my pregnancy leg, to sit without discomfort, to walk without pain.

But of course, I should have known by now that adjustment to a new leg took time—time spent building up new calluses under new blisters. And it took time to adjust to a new gait, a new way of sitting on the toilet, a new way to balance holding my child in my arms.

The moment I put on the new leg, my stomach sank to the floor. It skewed my body, distorted my posture, and rubbed hard up in my crotch. I realized what I already knew: “normal” to me wasn’t really normal to begin with. My normal is being an amputee.

I allowed myself some grumbling and self-pity as I drove home, made my way into the house, and found my place on the familiar sofa. Mark came to me with Luke in his arms. Luke stretched his body from Mark’s, wanting me to hold him. I reached up and took him. Luke’s deep dimples emerged as he broke into a smile, and his arms flapped with impatience. He reached down and lifted my shirt. After I rearranged my bra, he latched on and began to suck enthusiastically. I stroked his soft blond hair, and my self-pity melted into gratitude for my little family. I let out a heavy sigh. He’s worth it all.

Mark sat down next to us and started rubbing my neck. “I’m sorry, Colleen. I know this is hard.”

I was grateful for his kindness and selflessness.

“I just want be able to keep up. He’ll be walking soon, you know? How can I be a good mother to him if I can’t keep up?”

“You’re an amazing mom, honey. Just give yourself a while to adjust to the new leg. It’ll get better.” My disability was mine, but Mark’s loving presence made me feel less alone. As Luke nursed, I rested my head on Mark’s shoulder, appreciating how patient he had been and how I was starting to trust that he truly was a partner. I kept waiting for him to hate me for being disabled. But it looked like he never would.

Luke started crawling at six months and walking at ten. I loved to watch him as he struggled with each movement. I could see the connections forming in his brain, the learning process in action. I wondered how jumbled my brain paths must be after learning subtle new ways to walk eight different times over the past nineteen years after each of my new legs was handed to me. Here I was again, right alongside Luke, relearning what my body should already know how to do. I walked up and down steps, one at a time, just like Luke. I caught myself teetering, finding my balance with the new leg, just as Luke found his.

Mark finally explored the park three blocks away from our house and started taking Luke to the swing set. One warm Saturday, Mark encouraged me to join them. “Why don’t you come with us, honey? Last weekend, I put Luke in the baby swing and he just loved it. You gotta see him laugh when he’s in that thing.” A flash of fear swept through me as I tried to map out how far the park was. Could I walk there and back comfortably? Maybe not, but how could I say no to an invitation to see my child laugh while he was swinging? I put Luke in the stroller, and we started the three-block walk to the park. When we were nearly at the park I tripped on a crack in the sidewalk and lurched forward, pushing the stroller away from me. Mark casually ran up to grab the stroller, just a few feet ahead of us, while I stopped my momentum and stood still to catch my breath. The sudden physical movement of nearly falling triggered an emotional response. I stifled my tears. “I’m sorry, I didn’t mean to …”

“Are you okay?” Mark put his arm on my elbow supportively.

“Yeah, I’m fine.” I took a deep breath and kept walking. But I was filled with guilt and fear. What if Mark hadn’t been there to intercept the stroller? How far from me might it have strayed before I would have been able to right myself and catch up with it? A terrifying worry was growing in me that I might not be able to protect Luke—that my lack of mobility would prevent him from having something very basic: safety. I was used to going through this process of learning to walk on a new leg alone, in private. I had always been able to manage my amputation, but only just—and only by myself. Now I needed to figure out how to manage my adjustment while staying present for my family and keeping my child safe. Could I do it?

Once we entered the park, we walked over a grassy lawn to the play area, which was nestled in a grove of fir trees. Sawdust chips layered the ground, forcing me to alter my gait to manage the uneven surface. We put Luke in the swing, gently pushed him, and laughed with him as he squealed in delight. In my spiritual quest, I was learning to stay present in the moment, to be in the here and now. And here with Mark and Luke, in all his innocence and purity, right now, all was well. I was able to let go of my negative feelings, if only for a few minutes, and stand on firm footing, filled with love and joy.

On our walk back, my stump started tiring and cramping, and a small raw spot developed from the incessant rubbing of my prosthetic leg against the delicate skin. The sore, though small, burned with a deep intensity. I exaggerated my limp more to try to avoid the rubbing, but that didn’t help. I was walking slowly, and Mark slowed his pace to match mine. Luke was blowing spit bubbles in his stroller and playing with his rattle. I knew Mark didn’t care how fast we walked, but I hated being the one to slow us down. I was a yo-yo. Up with the joy of love flowing to and from my family, and down with frustration as I constantly butted up against the reality of my body.

“We’re fine walking with you. Don’t worry about it.” Mark seemed genuinely happy just to have the three of us out on a walk together.

I wished it could be enough for me that we were all together. It was so simple for Mark, and yet for me, achieving contentment was so difficult. It was my life’s work, it seemed.

“Can I do anything to help?” he said quietly, sensing my discouragement.

“No. There’s nothing you can do. This is my journey, Mark.”

It was one thing for Mark to see my weakness. But the difficulty of this particular layer of grief for me was that I had to start giving the message that I had limitations to my son so early in his life. Whenever Luke became too heavy to hold, I would have to say, “I have to put you down, buddy, Mommy can’t hold you anymore.” How often would I have to expose my limits, my weakness, to my son? I hadn’t been a mother for long, so I didn’t yet realize that admitting our limitations and boundaries to our children is every parent’s grief point. What was “missing” in my parenting might be more obvious than another parent’s lack of empathy or poverty of spirit, but it wasn’t any more or less dire. I just didn’t know that yet. And I would have to learn it step by step, just as I’d had to learn everything else.