Because I spend my days now writing historical fiction, I tend to think in terms of genres. It occurs to me that the story of our family life with Gabriella has assumed the features of many fictional categories over the years.

When she was born, we found ourselves thrust into a Horror story. With no medical background (and an admittedly squeamish nature), I was awestruck as the obstetrician cut into my wife and pulled our daughter from her body. From the start, we knew something was wrong, but we had no idea what. It soon became clear we faced a monstrous threat to our child’s life. Her inability to nurse reduced her weight to under five pounds and sapped her strength during her first two weeks, and we barely reached the emergency room in time to skirt disaster. Like the Friday the 13^th series, this tale of terror has had too many sequels, leaving us wrung out whenever we got through the current ordeal and dreading the next one.

In less than a year, cataracts appeared in both of Gabriella’s eyes. Over four surgeries, the ophthalmologist removed the clouded lenses and replaced them with artificial ones. For me, my child’s ability to see through these intraocular lenses was the stuff of Science Fiction, reinforced when she tired of glasses and contacts and remained able to track us with her ‘new eyes’. The medical technologies that unfold today reinforce this sensation.

There was nothing cozy about the Mystery of trying to understand our child’s condition. Gabriella’s diagnosis, a genetic syndrome that doomed her to a life expectancy of one year, plunged us into mourning. But despite the geneticist’s certainty, we maintained hope, hunting for clues to disprove her hypothesis. We didn’t see the markings on her ears or the specific head-shape that were prominent symptoms. Not long after she celebrated her first birthday, the genetics team acknowledged it was a red herring. We were left without a solution, which no mystery reader likes. But given the alternative, we were relieved to treat each new situation as its own mystery.

Most of Gabriella’s childhood fell under the genre of Suspense. We survived on a constant diet of adrenalin, rushing from doctor’s office to ER like in a classic chase scene. After they removed a tumor from her skull and the frozen section showed it was malignant, we waited on tenterhooks for the doctor to share the final results. Our relief when we found it was benign was short-lived, as she was hospitalized with a seizure. On it went at a relentless pace. Even when things were calm, we awaited new twists like a character in a Hitchcock film.

While we weren’t looking, Gabriella experienced her own Coming-of-Age tale. As with so many things in her life, we learned to look at her development differently, celebrating milestones that go unnoticed in most lives. It can be challenging to know when it’s still appropriate to approach her like a small child and when like a young lady. Not long ago, we realized that she had grown more patient, more social, more mature.

Most of all, though, this has been a Love Story. When our daughter arrived to change our lives forever, a colleague told me this experience would either bring my wife and me closer together, or drive us apart. Lisa and I have been among the lucky ones, knowing other couples unable to survive the enormous stresses associated with raising a child with disabilities. For both of us, there has been another dimension of our family’s saga. Gabriella has taught us about true love, with her own being unconditional, her trust unwavering, her forgiveness immediate.

Whatever shapes the story of our family have taken over time, I find it’s influenced my writing in many ways, some of which I recognize, and some I probably never will.

This week, I’m pleased to share a guest post by Gabriella’s brother Alexander. I think you’ll enjoy it.

I’ve always been proud to be Gabriella’s brother. I’ve gotten to see life in a different way than most people, and all of these experiences have made me a better person. However, it’s always been a little hard for me to talk with people about Gabriella because of the different reactions that I’ve gotten to telling people about her multiple special needs. A few people, especially when I was much younger, would have had lots of questions that I usually didn’t know the answers to. More often, people have a concerned look on their faces and nod solemnly or say, “I’m sorry.” And still other times, people have no reaction at all when I mention that Gabriella has special needs.

Having a sister with multiple special needs has also made me very aware of the dreaded “R” word. While it’s always been a sore spot for me, a term that seems to be among the English language’s ugliest words, I’ve heard it many more times than I would expect from people I’ve met. Whether in passing, as a joke, or even to describe someone with actual special needs, I’ve always grown a bit cold towards people who use the word, especially when they know about my sister and still say it.

Growing up, the perceptions of others were an obsession of mine. I have vivid memories of walking down the boardwalk on vacation and simmering with anger as entire families craned their necks to stare at my sister. (I had to laugh when I read my dad’s post where he mentioned my asking the question, “Why do people have to stare?” I really gave my dad a hard question there, didn’t I?) In these situations, I always preferred when people came up and said hello to Gabriella politely rather than singling her out and making us all uncomfortable.

There were trying moments of childhood like these that made me feel lost and confused, but these events have always been overshadowed by the positives of life in our unique family. For example, my sister has helped me strive to be as considerate of a person as possible.

Whether battling through surgeries or brandishing clicks and a smile in the most needed moments of frustration or stress, Gabriella has always been there for me when I’ve needed her. Sure, she can be cranky at times, but I’ve always found that in those most crucial emotional moments, she has read the room, sensed the anxiety, and let out booming sounds of joy. No one else I know would attempt to do such a thing in a quiet and tense situation, but she has always been able to tell when her happiness and words are most needed.

I’ve also learned about compassion from living with my sister. Over the years of feeling in the dark about how my sister is really feeling at a given moment, I’ve tried many times to put myself in her shoes and imagine life from her perspective. Every time I do this, I walk away with an even greater respect for all that she has overcome. It’s impossible for me to understand all of the things she has gone through and how she feels at any given moment, but I’ve learned how important of an exercise it is to try deeply to understand how other people feel and to imagine the world from their perspective, even when it seems hard to do. In my life so far, this has been among the most useful skills I’ve learned, and I owe this one to my sister.

But beyond lessons, life with Gabriella has always been my life. When I was very young, I wished that Gabriella could run around and play with me. Then I wished I could understand everything she said, and I wished she could understand me. Sometimes I wished that our family could do things all together just like other families.

But as I’ve grown up, I’ve remembered how Gabriella and I played together and how we’ve communicated in our own language, and I’ve realized just how much she understands me and I understand her after so much time together. I look forward to saying hi to her when I get home and seeing a big smile appear on her face, and we often sit together with my parents at dinner time and talk altogether. And now, I’m confident that I would never trade what we have as a family for what some would call a “normal” family life.