Happy Ends: How we define a happy end for ourselves, our child, and our family

I am in a writing group with three other women. The genres we prefer are very different, but our stories have one thing in common: They all have happy endings. The first manuscript I submitted to my group was based on experiences I had while parenting my youngest daughter, JJ. At the age of two JJ received an autism diagnosis and exhibited many of the common symptoms—self-injurious behavior, screaming meltdowns, disinterest in the people around her, repetitive movements, and language delay. But she responded so well to behavioral therapy that I decided to write about the progress she made. The story was fictionalized, but I based the main character (a little girl) closely on her. As I was finishing up, things seemed to be going well for our family. I could easily extrapolate our lives and imagine a future full of possibilities. So I included an epilogue that took place three years in the future. In it, the little girl began her first day of kindergarten as a calm, confident, happy, and fully verbal child.

Just as my writing group was done critiquing my manuscript, my family received some gut-wrenching news. We were told that my daughter had been misdiagnosed. She wasn’t autistic. Instead, she had Rett Syndrome—a rare genetic disease that can mimic the symptoms of autism when it first manifests. Unlike autism, Rett Syndrome is progressive. It robs children (mostly girls) of the use of their hands, their ability to talk, and, often, of their ability to walk. It can also involve seizures, swallowing and breathing difficulties, and severe anxiety. Life expectancy is improving but is still less than the average person. In a nutshell: not a diagnosis you want for your child.

I was on the brink of adding a final polish to my manuscript when the news hit. I hesitated, unsure what to do. I now knew that my daughter and family were never going to get the happy ending the characters in my story do. In light of this, should I delete the epilogue? I asked my writing group what they thought. One woman was torn. She thought the story would be fine either way. Another was sure I needed the epilogue. “It’s still fiction,” she told me. “Your readers are going to want their happy ending.”

But the last member of our group disagreed. She pointed out that, in the final chapter of my book (before the epilogue), the character of the young girl is surrounded by a loving family and making progress with her therapy. “That is a happy end,” she insisted. This gave me pause. The woman has an adult son with special needs, so she had already spent a couple of decades thinking about things like this. Perhaps she was on to something.

My dilemma percolated in the back of my mind but was hardly the most important thing in the wake of JJ’s diagnosis. Instead, my life was exploding. I had so much to do and so much to process. Still, I continued to wonder. Should I keep the epilogue? Or was that too misleading? Should I cut things off at the final chapter? Or was that too depressing? I went around and around like this for weeks.

As my family struggled with our new life and much-altered future, people rallied around us. My mother did my laundry so I had time to deal with the paperwork, emails, and phone calls that were pouring in. Neighbors brought by frozen dinners. Friends sent kind messages. My in-laws started making the three-hour drive to our house once a month to help babysit the girls.

My father-in-law had made this generous decision after reading the five-hundred-page Rett Syndrome Handbook online. I admired his persistence because I had to give up after a brief skim. I was too shaken by my daughter’s possible future. For days I had nightmares. Of JJ in a wheelchair. Of JJ staring into an eye-gaze device. Of her hands, twisted and useless, sitting in her lap. I told my husband about the dreams, and he wasn’t surprised. He was having nightmares of his own.

Thankfully, my husband is a more balanced, less anxious person than I am. A few weeks into our new life, he told me that we needed to change the way we were thinking. “I’m going to view the future differently,” he said. “Every time I see a person in a wheelchair or with a medical device, I’m going to see the love behind all of it.” At that point we both had an idea of the time, energy, work, effort, and money it took to secure things like wheelchairs and eye-gaze devices. It was no mean feat to wade through the mountains of insurance paperwork, the meetings with doctors and therapists, and the appointments for fittings and adjustments. My husband was right. Behind every girl and her equipment was a family who loved her enough to persist until she had what she needed. So I made him a promise. I was going to try to see the love behind those things too.

One weekend, a few months after the diagnosis, I went to the gym during one of my in-laws’ visits. On the way back home, I slowed the car to a crawl a block from our home. There, on the sidewalk, was my family, out for a walk in the cool autumn sunshine. It was a beautiful day, so I sat in my idling car, taking in the scene. My oldest daughter led the group on healthy, steady legs, eager as always to reach the park with the monkey bars she loved to climb. My in-laws trailed after her. My husband, the tallest of the group, towered over everyone. And in the middle of the group—one little hand clutched in his—was JJ. Her legs were wobbly and held up by braces, but there was a smile on her face and purpose in her stride. She loved the park and seemed determined to get there one way or another.

By that point JJ had quite a bit of equipment. The shoe inserts and braces on her legs were only the beginning. There were larger, sturdier inserts on the way, as well as a gait trainer, bath chair, and medical-grade stroller. Sitting on our dining room table was a folder full of picture symbol cards—the first step toward an eye-gaze device. Each of these things was a tangible manifestation of our love for our girl. They were the way we told her that we cared, that she mattered, and that we were never going to give up.

I looked at my family, so determined and so full of love for her, and realized how lucky JJ was. Even more important than the equipment were the people in her life: the therapist who fed her, the grandmother who rocked her, the father who steadied her, and the mother who kissed her to sleep at night. We were all a part of her story and were doing everything we could to direct where it went. In that moment, sitting in the car, I realized something. This could be our happy end, if we let it.

We don’t always get to choose the path our story takes, but we’re never completely powerless. We can frame the twists and turns in any way we choose. We can write our own happy ending. And even if it doesn’t look the way we thought it would, that ending is still worth living. I thought mine would be full of children running around the house, playing with toys, and chattering to me about their day. It hasn’t turned out that way. But when I pictured my life as a mother and wife, I also pictured a house full of love. That has happened. No matter the plot twists to come, that will always be true.

You might be wondering at this point what I decided to do about my epilogue. In the end, I left it in. Not because having a healthy, able-bodied, verbal child is the only way for a family to be happy. Instead, I left it in for me. I will never experience what my characters did. My youngest daughter will never bound into a kindergarten classroom and tell me goodbye with her voice. Instead, I will guide or wheel her in before she takes leave of me with the aid of an electronic device. And that will be okay. But, just for a moment, I wanted to experience what it would feel like to be a mother of that other child—the one she would have been had fate been kinder to her.

There are vast differences between fiction and fact, but the term “creative non-fiction” exists for a reason. We see things the way we choose, especially when it comes to our own lives. It’s okay to imagine what things could have been like and to picture our happy ends as we thought they would be. But then we must come back to the life we were given. Mine is not a tragedy and—I’m guessing—neither is yours. There are still beautiful things that shouldn’t be ignored. Kind-hearted people who wish the best for our children. Mountains of paperwork and piles of equipment that testify to how much and how deeply we care. Times when someone laughs, when we are surprised by an unexpected kindness, and when love bubbles up inside of us. These moments are a part of our stories, and we should enjoy them to their fullest.

If we let them, they can even be our happy end.

What did your happy end look like before you became a special needs parent? What does it look like now?

Leave a comment and tell me below.