Larry was making the most of his freedom.
After three hours cooped up and airborne, he relished the opportunity to stand on his own two tottering feet. My husband queued at the hire car counter; Larry wandered wherever he fancied. We took turns, his siblings and I, being his shadow. We held a hand, or let him roam free, always one step behind.
As I scurried after him, I caught sight of John and his mother. We’d met on the plane earlier. Inveterate travellers, they’d spent seven weeks in Australia at the start of the year. They’d feared the marathon flight—he gets terrible pain in his back if he sits too long—but being chair-crammed for twenty-four hours troubled him none.
Each year, they visit The White Isle to spend time with the mother’s cousin who, decades before, came for a spell, fell in love and married a native Ibicencan. After his death several years ago, a Brazilian captured her heart. The cousin and the Brazilian used to run a farm, but now cherish the space and the slowed down pace. It sounded idyllic.
John and his mother had been invited to live in one of the former farm buildings. They considered the offer, but he’d miss his activities too much. Instead, they savour their annual trips. In Ibiza, John makes the most of his freedom. Familiar with the land and the locals, he can roam wherever he fancies.
They’d had ‘special assistance’ to leave the plane. I watched as John was wheeled through the ‘Arrivals’ corridor.
He glimpsed the cousin; I glimpsed the future—a vital, connected life.
His was a visceral delight unbound by social conventions. His whole being reacted to the sight of this beloved face. Both legs stretched straight out, stiff like sticks. His elbows bent up; with hands to face, he flapped as if fanning himself. His mouth made an ‘ogh’ shape. “That’s what Larry does!”, I laughed, recognising this pleasure incarnate. When my son sees something he really likes, his insides spill out. Emotions come bodily spelt. There is no subtle reading between the lines with Larry. Through signs, sounds and physical actions, he boldly gives it to you straight. It can be disarming, in a child, this unfiltered emotion; discomfiting in grown-ups expected to conform to the norm of expression repression.
Larry is our bonus child.
For years his siblings had asked, “When ya gonna born another baby?”
“I’m too old”, was my customary response.
Turns out forty-one wasn’t too old.
After several years of focusing on the family, I thought I was on the cusp of regaining aspects of myself that had long laid dormant. Thinking menopause was the next menstrual stop, I never imagined a baby was on the cards. But, a whiskey-fuelled night of passion changed all that.
I forgot about the tryst until I missed my period. A moment’s hesitation: Is this the right thing for right now? I couldn’t imagine falling into my autumn years as mum to a teenager. I knew this was not my call alone to make. For a few days, I kept this discovery to myself. I wrestled with how best to break the news to my husband. A clumsy, I’m taking one for the team, tripped off my tongue. It didn’t even make sense.
When Larry was born, he was the missing member of the family we never knew we needed. We loved him from the first.
His brother showered him daily with an outpouring of affection previously unknown to us. Each night, he would creep into the bedroom as I was nursing Larry to sleep. Kisses rained down on hands and feet and head as he softly said, “Night, night Larry”. Kiss. “I love you”. Kiss. “Sweet dreams”. Kiss. “See you in the morning”. Kiss.
Our daughter wanted to hold him all the time. A self-appointed surrogate mother, she carried him everywhere. His presence gifted her the opportunity to express a gentleness usually reserved for her heap of raggedy soft toys.
In contrast to the quiet hum of home, the plane that morning was full of lewd-mouthed party revellers. John and his mother sat in front of me; a slightly tipsy woman sat behind.
Sorry about the noise, she said. Freed from parental responsibility, she was on a rare weekend away with some mates. We bonded over children; our daughters were the same age.
He has Down’s? she asked of my youngest, needing no answer.
Turns out, her younger sister, Alice, had had Down syndrome too.
She was only three when she died; I was five. This grown woman still thought of, and missed, her sister. Alice’s life may have been brief, but its influence spanned generations. This sibling relationship spawned an understanding that those born with an extra thread of genetic material were still just people; a natural strand of life’s multi-coloured tapestry. I never had the tests when I was pregnant. And why would she? Having already accepted Alice’s differences and seen, with her own eyes and heart, how a mother can love a life that others see as worth less, she’d had nothing to fear. She’d been touched.
John pulled the cousin in close for a solid hug. What a welcome, I thought. How lucky is she to be greeted that way, knowing it was my own good fortune I was thankful for. My eyes stung; my throat constricted. The beauty of the moment, this unedited flow of love, caught me. I know how it feels to be on the receiving end of such an exchange. Larry is a master hugger with a highly honed empathy radar. Sensitive to human suffering, he is the first to offer a cuddle when sadness strikes. He snugs in, wraps his short arms around and gives a feather-light pat to the back—he may be tiny, but his tenderness is giant.
I scooched my son from ground to hip, turned back towards the hire car counter. My mind flew forwards to my own grown man greeting his own familiar, beloved faces. A valuable life artlessly spreading joy.
I’d a nagging feeling that others at the airport had not seen the same beauty I had. I know there are people who think the world would be a better place without the likes of Larry and Alice and John in it. Perhaps the honest, hopeful, humanness, this ability to be the essential self, is threatening to those of us who crush our free spirit under a mound of heavy thinking.
What is it with this place? I wondered.
On our first ever trip to Ibiza the year before, a long, lean chap from Berlin came over to have a chat. He’d noticed Larry and felt spurred to tell us about his sister. For him, growing up with a sibling with Down syndrome was a rich and rewarding experience, one he was grateful for. He spoke of how much he had learnt from her and how she had influenced his life. She inspired him, brought out the goodness in him. We will always remember this man. Chiefly for his generosity and kindness in sharing his story, but mostly because, after he left us and sauntered across the sand back to his wife and baby daughter, he deftly peeled off his clothes. Nonchalant, buck-naked and bronzed, he dashed towards the shore and plunged into the sea. To this day, Cala d’Hort, legendary sunset-watching spot opposite the mythical Es Vedra rock, is referred to as The Naked German Beach.
Before we’d touched down, I’d heard both John and Alice’s stories. And, earlier, at the airport, a security guard told of his daughter, Mary, a 20-year-old college student who’d had hole-fixing heart surgery as a 3-month-old baby. He’d offered to hold Larry after the gates had beeped when I walked through. I’d randomly been selected for checking. “Thanks”, I said, “but I’m not sure he’d appreciate it; he can be a bit funny with strangers”.
“I’ve got one just like him at home”.
“Have you?” I asked, uncertain whether he meant one with an extra chromosome or a toddling one with blond hair and blue eyes. He meant the former; a daughter he was proud of and wouldn’t change for the world.
I spent the first few days of the holiday mulling over these four encounters, curious as to what life might be telling me. It seemed clear something was amiss in the way life with an extra twenty-first chromosome is represented in society. There’s a marked difference in outlook between insiders with a lived experienced and outsiders with a narrative dragged from the fusty pages of medical texts or expert opinion.
In essence, what we imagine is not the reality, so why all this fear and repulsion?
In these testing times, evermore sophisticated screenings mean we are on a fast-track to a world without Down syndrome. There’s a common misconception that such a life is a burden on society and one full of suffering. Yet, those who live closely with the condition tell a different story. Divorce rates are lower. 88% of siblings feel they are better people for having a brother or sister with Down syndrome. Further research reveals almost 99% of those with Down syndrome are happy with their lives. This alone is staggering.
Why is it so hard for us to see beyond the skin to the soul within? To embrace diversity? Why is our measure of what makes a life meaningful so restricted?
Each and every one of us is made of blood and bones and starstuff. We are of the same creative intelligence that makes the leaves flame orange in autumn. The one that spins this world, beats our hearts, thinks us.
I spent much of that holiday dreaming of a world in which the kindness and generosity of the human spirit trumps our capacity for cruelty. A world in which tolerance and acceptance of people with Down syndrome, and other disabilities, was a given.
We are more than the vessels that carry us.
We are spirits made of human, here by design.
- B. Skotko et al. (2011) ‘Self-perceptions from people with Down syndrome’ Am J Med Genet A. 2011 Oct; 0(10): 2360–2369https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3740159
- Skotko et al. (2011) ‘Having a Brother or Sister with Down syndrome: Perspectives from Siblings’ Am J Med Genet A. 2011 Oct; 155A(10): 2348–2359https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348944/
- Rabbi Dr Jonathan Romain (20116) BBC Sunday Morning Live https://www.youtube.com/watch?v=Bxi0TJ9ItI8&list=PLZJQT8QBOn-IEciegF9jkdSdBeGevkQOr&index=36
- Groskop (2016) ‘Sally Phillips: Do we really want a world without Down’s syndrome? https://www.theguardian.com/lifeandstyle/2016/oct/01/do-we-really-want-a-world-without-downs-syndrome-ds-prenatal-test
Touch Down was first published at The Manifest-Station, a beautiful place full of real and raw stories about being human. I am posting here with their blessing …