True Stories: Volume VII is a wonderful collection of works produced by the graduates of The Narrative Project, an organization that supports writers in getting their books done. 

This is my second published short story.  I hope you enjoy it. 

In 2010 we were looking forward to the birth of our daughter, Caitlyn, to complete our little family of three. Her soon-to-be big brother was as excited as my husband, Jim, and me, awaiting the happy day.  Suddenly and unexpectantly, Caitlyn came early, via emergency C-section, complete with stage four cancer of the spinal cord. 

My life morphed without my consent into something unrecognizable; a version that revolved entirely around Caitlyn and her medical needs, leaving no space for me to grieve the “normal” family we would never be. I was pissed off—a lot.  Not at Caitlyn, but at life.  At the unfairness, and at all the shit in life that I couldn’t control.  

Anger at life became my default. 

After she endured eight rounds of chemotherapy during her first year of her life, the neuroblastoma went into remission, but the cure left profound collateral damage. The tumors obliterated Caitlyn’s lower spine and, as a result, her legs were paralyzed from the knees down. In addition, she was left with a non-functioning bowel and bladder, as well as hearing loss and severe developmental and intellectual disabilities. 

And yet, Caitlyn was a sweet and happy baby who grew into a cheerful toddler, even if she seemed in many ways mysterious and unknowable. 

When she was two, we started Caitlyn in water therapy at the local hospital. The therapist was teaching her motor skills and coordination, but for Caitlyn it was simply playtime. Quickly, water-therapy day became her favorite day of the week.  Once she outgrew the hospital’s tiny pool, we found a swim instructor at a private physical therapy clinic who had experience teaching special needs kids. Their pool was warm and indoors, too, and significantly larger, so Caitlyn could spread her fins, if you will. 

Caitlyn’s intuition in the water astonished me.  She had zero fear of putting her face in the water.  EVER.  She just did it.  When she got tired, she rolled on her back and floated, catching her breath. Nobody had to teach her. It just came naturally.  

At three years old, yet another diagnosis was added onto her ridiculous collection.  Caitlyn has autism. Would we never catch a break with this kid? How many more labels, disabilities, diagnoses, and “ologists” could life pile on her??  It was infuriating.  Caitlyn’s life, our lives, consisted of endless therapies: occupational therapy, behavioral therapy, speech therapy, and physical therapy teaching her how to walk with a clunky bracing system and crutches.  

But in the water, Caitlyn was truly free. No complicated orthotics.  No walker, no crutches, no wheelchair.  

No limits!

Because Caitlyn’s legs are paralyzed, she’s always had exceptional upper body strength. All I had to do was slip those old-school inflatable floaties onto her arms and she was off. She delighted in being independent, unencumbered by a bulky life vest, and able to get herself wherever she wanted in the pool under her own power. She could move her body any way she desired. 

Caitlyn could spend all day, every day in the water. Whether swimming in our local pool, at her grandparents’ house, or on vacation, she would reluctantly get out only when I insisted she eat or to take care of her toileting needs.  Given half a chance, she’d happily go to bed each night with damp, chlorinated hair and red-rimmed eyes.  

Caitlyn’s favorite activity in the water was “Big jumps!” which consisted of me or Jim tossing her into the water, either from within the pool or from the side.  The higher the better!  Once she discovered the diving board at our local pool, it was on!  At first, I carried her up the ladder and jumped off with her in my arms.  She never once feared the height.  As soon as we surfaced, she crowed, “AGAIN!  Want again!” Soon, that became “Do myself!” So I started to throw her off the end of the board to Jim who was waiting in the water. Her joy allowed us, just for a moment, to forget her disabilities.   

In the water she was unbound. Uninhibited.  And happiest.  If she could have figured out how to breathe underwater, she would never have surfaced. 

She is my mermaid on dry land.

While the water wings worked fabulously for several years, by the time she was six I knew Caitlyn would soon outgrow them.  I needed to find an alternative that would keep her safe and yet give her the freedom in the water she was used to.  

And deserved. 

Caitlyn has a unique spinal cord injury.  She has no movement or sensation from her knees down.  But she can bend and flex her knees, and she has quadricep, hamstring, and hip flexor strength.  I knew she could kick in the water because I had seen her do a rudimentary kick now and again, but with her buoyant water wings, she didn’t have to utilize her legs much, so she didn’t.  She needed to learn how to swim, properly, within the constraints of her body, and soon.  But I was at a loss at how to adapt to her needs.  

One day I took her to the pool after school as I often did and, while she was playing in the water, I jealously watched an instructor giving an able-bodied child private swimming lessons.

I thought of Caitlyn’s physical therapist, Dian. They’d been working together for five years and Dian was intimately familiar with Caitlyn’s strengths and challenges. If only there was a Dian who could teach Caitlyn to move not on land but in the water.

The swim instructor looked familiar.  After a while it came to me: this was Jorie, a kindergarten teacher at Caitlyn’s school. A thought sparked. Why not bring two experts together to build an adaptive swim program for Caitlyn?  

Excitedly, I reached out to both ladies to see if they would be willing to combine their expertise.  The answer was a resounding, “Let’s do it!”  

The big day arrived. Dian and Jorie compared notes. Dian explained the details of Caitlyn’s disability, her strengths and weaknesses, and where she would need extra support.  Jorie listened carefully, formulating a plan. Soon Jorie got in the water with an exuberant Caitlyn—still wearing wings for now. Dian sat on the edge of the pool, ready to advise as needed. 

         It quickly became evident that the buoyant floaties on Caitlyn’s arms were making her legs sink, which created drag. To streamline her body position, Jorie placed a Styrofoam noodle under her hips to elevate her legs and get her kicking. That way, she reasoned, Caitlyn could focus on her arm stroke and breathing.  

         At first, Caitlyn was having none of it. She wanted to do what she wanted to do—play with her toys and do as many “big jumps” as possible. “First, big arms. Then, jumps,” Jorie instructed.  Eager to get to the jumps, Caitlyn grudgingly complied.  But make no mistake, Caitlyn did not let Jorie forget one single jump that she earned.  

         Despite a successful first lesson, a seed of doubt sprouted in my gut. For better or worse, Caitlyn is her mother’s daughter and, just like me, she can be a stubborn little shit. What’ll happen without her water wings?  Will she refuse to cooperate at all?  

And, as expected, at the second lesson the wings came off and the real work began. Now Caitlyn reallywasn’t happy. She let us know with a series of adamant, “No’s!” and “No thank you’s!”  Dread crept into my soul.  Dian had plenty of experience with Caitlyn’s protests, so she helped Jorie from the side of the pool to try to keep Caitlyn on task, but despite big jumps and breaks for free time, Caitlyn’s refusals kept coming. At the end of the lesson, Jorie and Dian offered Caitlyn high fives but by then she was howling.  As for me?  I was doing my best not to cry.

         Sitting in the car after that lesson, away from prying eyes, I finally let my own tears fall.  

         Now what??  Do I force Caitlyn back for another lesson? And be the mother from hell? And another after that? Will Caitlyn ever “get it”?  Where do I draw a line in the sand and say, enough? 

          GODDAMMIT!  The incredible unfairness of the universe is relentless!  Why me? Why always me? Why us? What did we ever do to deserve this crap?

       “Want goldfish!”  Caitlyn’s cheery request shook me out of my head.  In the rearview mirror I watched my daughter happily singing along to Elsa, belting out, “Let it Go” from the movie Frozen.  

         The irony was not lost on me. 

About halfway through the third lesson, Caitlyn figured it out.  If she kept her face in the water instead of looking up, her hips remained elevated.  It was like a flip switched in her mind and for the rest of the lesson, her face was down and her booty up.  I could see the change in her body position and, what’s more, she realized it worked!  She was so proud of herself.  I was so proud of her!  And filled with relief. 

Followed immediately by crushing guilt for having ever doubted her.    

Eventually, she developed a strong and efficient kick. Although her arm stroke remained lopsided no matter how hard Jorie tried to get both her arms to break the surface of the water, her unique technique worksfor her. Caitlyn graduated from her lessons able to confidently swim lap after lap, from the shallow end to the deep end and back.  

Now she was not just a mermaid, but an efficient mermaid.

Our life with Caitlyn is a never-ending series of challenges, and the pool was no exception. At almost ten years old, Caitlyn was getting too big and heavy to carry.  Since neither Jim nor I could carry her up the diving board anymore, I had no clue how to keep her doing the thing at the pool she loved the most, and it killed me. 

Then one day I watched in stunned amazement as my daughter pulled herself out of the deep end of the pool, crawled to the diving board, clambered up the steps and made her way to the end of the board.  She sat herself at the edge with her legs tucked under her, and looked over at me. She smiled—and simply hucked herself off.  Just like that.  She came up grinning and giggling, swam to the edge of the pool, and did it again. And again.  And again. 

While I was busy being devastated by the potential loss of an activity Caitlyn loved, she had figured out Plan B. 

Of course, with Caitlyn, nothing was ever that simple.  Under the warm shower in the locker room later that day, blood began to flow freely from her lower legs. I was horrified.  And confused.  What in the hell??  

And then I realized: She had lacerated and deeply abraded her legs from crawling on the rough pool deck and, worse, the razor-like surface of the diving board.  The cold water had to have staved off the bleeding before, and I had wrapped her tightly in a towel to keep her warm on the way to the locker room, so I hadn’t seen the damage.

And she couldn’t feel the damage while it was being done. 

Overwhelming, gut-wrenching guilt engulfed me like a wildfire.    

But the damage was done.  And the damage was deep.  Like, layers and layers of skin rubbed raw and ripped off.  I knew immediately, assessing the tops of her mutilated, hamburger-looking feet that these wounds would take forever to heal.  

FUCK!  How could I NOT have thought about this???  

The only thing that saved me in the moment was knowing Caitlyn was more or less oblivious to her own carnage. 

 That day, I went from intense pride and joy at seeing my daughter overcome an obstacle that was seemingly insurmountable, to soul-sucking guilt and rage at myself. I just hadn’t known. Even worse was that Caitlyn had to bear the brunt of my carelessness.  For eight long weeks.  Because of the decreased circulation to the paralyzed part of her legs, it took a full two months of intense wound care for her legs and feet to heal up enough to get back in the pool. Again and again, with each daily dressing change, I was reminded how a moment of my carelessness could affect her. 

         It was a brutal lesson. 

          Unfortunately, no amount of guilt or rage could make her heal any faster. Meanwhile, Caitlyn really didn’t care and eventually, I simply surrendered to the process. 

Perhaps the only advantage of birthing a child with disabilities is that she has never known anything different. I don’t think Caitlyn considers herself disabled.  She just goes about her life, creatively solving her challenges as they come.  Caitlyn doesn’t waste time being despondent, or wallowing in self-pity, or raging against fate—unlike me. She refuses to give up. 

Also, unlike me.  

It would be a few more years in my own journey before I finally confronted my demons. I still had a few internal combats to epically lose before eventually surrendering my need for control. Finding acceptance and peace was still a way off for me, but moments like this were starting to accumulate. 

I was learning.    

Once Caitlyn was all healed up, we experimented with a variety of barrier systems and eventually found the sweet spot: a wrap of medical kinesiology tape—thick and stretchy with excellent adhesive—covered by two layers of thick, camel-colored dance tights to keep it securely in place.  We were back in business. 

Taking Caitlyn swimming these days, in any pool anywhere, goes something like this. I roll her into the swimming area in her pink wheelchair, tape her legs and put on her stockings, put her back in her chair, and roll her to the shallow-end steps where she climbs out of her chair and into the water.  Leisurely, I walk to a lounge chair and take a seat.  

I can feel the perplexed, sometimes horrified, looks of the people around me.  Is she not going to get in the water with her disabled daughter??  They are trying not to stare but they can’t help it. 

I take perverse pleasure in this part, knowing exactly what comes next.  

Caitlyn swims to the deep end where, for a few minutes, she treads water off to the side of the diving board, delighting in watching other people jump. She loves to go underwater and watch them under the surface.  

Eventually, she swims to the edge of the pool, pulls herself out and crawls to her place in line, unbothered by the kids staring her.  When it’s her turn, she makes her awkward way out to the end of the board, savors the moment, and jumps.  

I admit it: I bask in the shock of the other parents. 

My heart bursts with pride and I want to scream out loud:  BAM! That, ladies and gentlemen, is my daughter.