All children are special because they turn your life upside down and you have no choice but to change and grow, for them and with them. My children have taught me about love, fear, and what perfection really means.
I didn't know love before Davide Valerio, my first wonderful son. Or at least not that kind of love—the unconditional kind that makes you available at every moment, asking nothing in return but their happiness. The kind that breaks your heart when you're helpless against their suffering. Pure, untainted love.
In short, children complete you. They give you a sense of security and that extra strength that only a mother and father can possess.
On October 28, 2014, Marco Aurelio arrived—my second son. He came into the world in a rush; in a world that's always hurrying, I thought his arrival seemed perfectly ordinary. I remember thinking that this little bundle had already learned to keep pace with the times.
Marco Aurelio is a beautiful child, born with the caul and with Down syndrome.
Apart from some initial unease, I had no trouble accepting my son's chromosomes. But I know that moment is experienced differently by everyone: parents who expect absolute perfection, relatives who feel pity for the disappointed parents, friends who, not knowing what to say, speak nonsense, hospital staff who witnessed the birth, the pediatrician who must deliver the news. Different life experiences lead people to react well or poorly, and this cannot be predicted. That emotion is so intimate and overwhelming that I don't believe it can be captured in a string of words. They say being born with the caul is a good omen. Indeed, Marco Aurelio had no associated health conditions. After a day of low muscle tone, we went home. From there, we began our journey into this wonderful and unknown world.
Fortunately, our time allows us to research anything. The first thing I did, alone in my hospital room, was search the internet for information about trisomy 21. I picked up my phone, typed "Down syndrome" into Google, and started reading, researching, joining forums, contacting organizations, buying and devouring books. I wanted to know everything about my son's condition. Most of all, I wanted to enter his world.
Since then, I've met many mothers like me. We exchange advice and keep each other informed about developments affecting our children.
Some days I think that to truly enter my son's world, I would need to tattoo three X's on my forehead—to understand what it feels like to sense people's eyes constantly on you. Visible difference makes a real impact. However beautiful his almond-shaped eyes and delicate nose are, he will always be at a disadvantage, because ours is a world that tends not to include people with disabilities. It's a society that doesn't tolerate imperfection. Often, a superficial one. People with Down syndrome are slower, and I think in that they're lucky, because they have the chance to enrich themselves with details that our hurried eyes usually miss.
Some time ago, I ran into someone I hadn't seen in about twenty-five years. She told me about her experience as the sister of someone with Down syndrome—about the long and difficult journey her mother had faced. Her brother was born forty-one years ago, when that usually meant being locked away in an institution. There were no organizations. School inclusion was nearly impossible.
There were no support systems in the workplace. If you were lucky enough to have a mother who pushed past everything and everyone, then you had a chance. But neuropsychomotor therapy, speech therapy, music therapy—these were almost unknown terms. There was very little to help children in difficulty grow. Parents were often left alone. Today, fortunately, much has changed. Marco Aurelio has neuropsychomotor therapy three times a week, speech therapy twice a week. I attend seminars and courses on Down syndrome. Once a year, we have an assessment to evaluate his health, clinical, and cognitive progress.
Every summer, the four of us attend Dr. Lagati's summer week for families with children who have Down syndrome (Ombre e Luci no. 136), where we meet and share experiences with specialists and parents in the same situation. And today, Italian law 104 provides certain protections for working parents in this circumstance.
All of this makes a tremendous difference, I hope.
At first, I thought my positive reaction was a mask and that I would eventually collapse. Instead, I've never felt more resilient. I thought my son had opened my mind to understanding difference—and in part, that's true. But someone made me reflect one day on who I was even before Marco Aurelio was born: my glass has always been half full. I'm someone who faces problems head-on, and for that reason, the birth of my wonderful second son never dented my personality. If anything, it confirmed who I was and made me stronger.
I believe it's essential to live our children with naturalness and enthusiasm, regardless of their chromosomal makeup. They're a constant challenge to change and become better people. Society changes, and it will continue to. We parents need to learn from our children. We should know how to look ahead through their eyes, observe without prejudice, and see the details without losing those extraordinary nuances.
Ours is a love story that not everyone has the fortune to live and understand. We are parents who have been given the chance to know what is invisible to the eye.
Valeria Stazi, 2017