S R Taddeo shares his story as a new parent of a child with Down Syndrome.

February 9th, 2013

Making room for love

 

Viera and I had been married just three weeks when her pregnancy was confirmed. Three years earlier, we had met at a prayer meeting in Tralee, Co. Kerry and, at a retreat in Ardfert one day, I plucked up the courage to ask her out. I had been on my own for some years, and Viera had never had a boyfriend, so we took some time to readjust to sharing more of our lives than we had been used to. It was worth the effort and perseverance, even when such recalibration brought some adjustment pains.

Eventually, I produced a ring and, six months later, my beautiful bride was walking up the aisle of St Mary’s Cathedral, Killarney, towards her nervous but happy groom. A honeymoon in Greece followed and now, here we were, in the maternity hospital in Cork, numbly staring into our daughter’s eyes.

I had been ready to text all my family and friends but my phone remained in my pocket. Did I feel guilty about not giving them the good news of a ‘healthy’ baby? Possibly! Mostly though, I felt gutted and afraid. I even felt like a failure as a father and as a man. Our daughter had 47 chromosomes instead of 46 – our daughter had Down syndrome! I hadn’t a clue about Down syndrome – I felt like I had turned up at the wrong exam centre having studied for a different test.

The next day, we learned she had serious heart defects, and this would take over from our concern about her primary diagnosis. Down syndrome of itself is not fatal, but this was a different matter. Our daughter, whom we had named ‘Chiara’ after the saint of Assisi (Clare), would need open heart surgery within the next six months, or she would not be expected to survive beyond two years.

Today, Chiara is 20 months old and charms everyone she meets with her curious stare and her winning smile. We have taken her to Lourdes, to Italy, to England, and this year we hope to bring her to Slovakia to see her mother’s homeland.

While Viera was still expecting, people would ask if I wanted a boy or a girl. When I replied that I didn’t mind, the next comment was usually, “Well, as long as it’s healthy”. I found myself wondering that if it wasn’t healthy, would it not be welcomed by anyone? In the end, I added an extra response: “…and even if it isn’t!” How prophetic those words turned out to be.

Traumatic 

Along the way, I would come across articles that told me Down syndrome was not welcome, stories of prenatal diagnosis and abortion. It is my heartfelt belief that, at traumatic times like this, to have the choice of abortion offered is not to reject the condition of Down syndrome, but to reject a real person that already has it. Couples need to be protected from a decision made at a vulnerable time of devastation and fear, as does their new child. That devastation needs to be allowed to turn into joy, the fear into love—and it does turn out that way, and very quickly too!

Personality 

When we were in hospital, I found myself, in idle moments, morbidly composing Chiara’s obituary should she have died. What I found myself wanting to stress, above all, was that it would not have been a ‘relief’ or ‘for the best’ had she died in infancy. Those who may think so, did not know Chiara, who asserted her little personality from day one. They were not there when she, with great determination on her face, reached out with her hand to play with her teddy bear; They missed her delighted, gurgly smile when she saw my face coming close to her own; They were not captivated by her insatiable curiosity for everything around her, nor disarmed by the gentle grace with which she accepted all the procedures done to her while in hospital – all the needles, tubes, wires, the poking and prodding, the scans and X-rays, not to mention major surgery – twice – and, afterwards, to still present us with that winning smile every time.

All she wanted was to feel the softness of her teddy bear and to know that Mammy and Daddy were never too far away.

Challenge 

Having a child with Down syndrome will be a challenge but, as with all children, it is a challenge to be embraced with both arms. Like all children, they will frustrate you, they will delight you, they will test your limits and they will break your heart. But, as Chiara knows, sometimes in life you have to have your heart broken before it can realise its true potential.

We move forwards now into the future, a future that will never be boring or predictable. Chiara will make sure of that. We do it together, and we do it with family, friends, professionals and well-wishers. Chiara is teaching us more than we could ever have dreamed of knowing, or ever have wanted to know, but are glad we do know.

The birth was not the best moment of my life, but those best moments did follow, and they still follow in abundance. There are more difficult moments too, but what family doesn’t have them, Down syndrome or not? Chiara is, first and foremost, a unique little individual, not a diagnosis. She has certainly shown us that over the last 20 months, and Viera and I look forward to many more months and years with our little treasure.

 

S.R. Taddei is the author of Room 47, a personal account of his first year as a father to Chiara. Copies can be obtained from Amazon or by contacting info@vierapress.ie