It’s the middle of summer and I’m still beaming about my daughter’s latest report card, which confirmed that:
“She is warm and empathetic.
Has a good sense of humor.
Plays interactively with others.
Follows classroom routines.
Cuts with scissors.
Makes marks on paper.
Can count to 10 without any assistance.
And last but not least, responds to her own name.”
My wife and I are so proud of her progress.
My daughter will be 20 years old in December. She has had intractable epilepsy for the last 19 years, battling through five to 15 seizures every day, despite dozens of drugs, therapies and special diets prescribed by smart doctors from around the United States and Canada. None of them have been able to stop her head-dropping, arms-flailing, body-collapsing seizures.
My daughter’s math is simple: approximately 2,000 seizures annually for nearly 20 years. That comes to about 40,000 seizures in her life, give or take a few thousand.
She has never caught a break, from her seizures or, pretty much, from life in general. No prom, college, dating, career, marriage, kids. Her future is as unclear as it is limited, yet I am grateful that somehow she’s survived all the trauma her misfiring brain has endured.
She loves riding the bus to her special school at a local church, but schooling for special needs students in New York, like in almost every other state, ends abruptly at age 21. Like millions of other special needs families before us, and millions more in the future, we’ll soon be cut off from all educational programming. That leaves us to cobble together something meaningful for her to do during the day besides sitting at home in her favorite chair, paging through picture books and enjoying hours of music on her iPod.
I hear too many stories about parents in their 70s and 80s trying to care for disabled adult children who are still at home, living painfully isolated lives with little social interaction. I don’t want to think about what happens when those parents pass away, but it’s impossible not to. And I’m aware of the intensifying housing crisis for disabled Americans. There are limited options and multi-year waiting lists and more than a few harrowing, well-publicized scandals involving abusive care or unsanitary conditions.
It’s easy to get anxious and discouraged and depressed when you have a loved one with disabilities. My daughter enjoys walking with my wife and me, arm in arm, around our town or the local mall, and it’s still difficult to ignore the looks from adults and kids who hear her loud laughter and high-pitched squeal and are clearly wondering what her problem is.
Once, I was holding my daughter’s hand in a nearby town, running in the rain to our car, and someone came to the conclusion that I was abducting her and called the police. They set up a road block, pulled us over and, with sirens flashing and hands on their holsters, demanded to know if the beautiful teenager in the back seat was, in fact, my daughter. Fortunately, she had a seizure in the car, as if on cue, and the policemen realized that the 911 caller was mistaken.
Another time, my daughter had a seizure at a tennis club we belonged to and within days, other members were petitioning for us to be expelled from the club. We quit instead.
And a few months ago, I watched a major candidate for president of the United States ruthlessly mock a disabled reporter, a poignant reminder that anyone with a disability, or their loved ones, has to have enough emotional body armor to withstand the occasional humiliation.
My wife and I have learned that to do this special-needs parenting thing right, you need to ignore a lot: the “retard” and seizure jokes in movies and TV shows; the insensitive questions from acquaintances who ask if epilepsy is contagious or the result of something maybe we did wrong (no and no); and the occasional doctors who seem more interested in maximizing their profits than helping our daughter.
I used to dream my daughter would outgrow her epilepsy, as many children do. That one of the new drugs from Europe or the latest miracle diet we found on the Internet would help. That one day we would wake up and the seizures would stop, the most miraculous miracle. But then I stopped dreaming altogether and just tried to do whatever I could to help my family cope, one day at a time — just as millions of families with challenges do.
These days, I rush home from work every night so I can see my daughter before she falls asleep around 8:30 p.m., exhausted from another day of seizures. I’ve read that as many as 50,000 Americans a year die from epilepsy and seizure-related issues, which doctors now refer to as Sudden Unexpected Death in Epilepsy, so I want to leave nothing unsaid between us. After she climbs into bed, I help adjust her pillows and rearrange her blankets to ensure she isn’t too hot or too cold. And I tell her, “You’re the most beautiful person,” and wait patiently for her to whisper, as best she can, “in the world.”
I stare at my daughter for a few seconds as she nods off, hoping she makes it though another night and that I will have the chance to tell her how I feel again tomorrow.
My daughter’s story is not one of endless despair. On the contrary, this journey has changed our family life in myriad ways. Despite the heartbreak and exhaustion and her daily challenges, my daughter is my hero and the rock of our family, even though her ability to communicate is limited. She is full of love for others and they love her. My daughter may be the happiest person on earth. She loves life more than anyone I know. She never wallows in self-pity and she reminds me with her infectious smile that neither should I. Her frequent laughter is inspiring and can turn a dark moment into a spontaneous burst of joy at the most unexpected times, even after a particularly brutal seizure.
For years, neurologists have asked us to keep a journal to document the time of day, duration and details of her seizures. There are boxes full of these notebooks scattered around the house, and the information has had little actionable value for our doctors or for us.
But one recent afternoon while clapping with my daughter as she listened to “Happy” by Pharrell Williams for perhaps the millionth time, I had an epiphany while hearing the words:
“Clap along if you feel like happiness is the truth,
Because I’m happy….”
At that moment, I decided to stop counting my daughter’s seizures. Instead, I’m counting how many times she smiles, laughs or hugs someone daily. That number reaches at least 50 a day, which is far more than the number of seizure she has. I like this math better. It means my daughter averages about 18,000 happy moments per year, which works out to more than 360,000 over the last 20 years. I guess this proves how happy she is in spite of it all. What more could any parent wish for?
Randy Siegel works at Advance Publications in New York City and is the author of three children’s books.
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