Jesús Valentino: 26 October - 10 November, 2014


Emma Gilkison


The following is an edited version of the tribute given by Jesús’ mother Emma at his funeral.

My darling baby boy, the first time I saw your heart you were just eleven weeks and five days old. It twinkled like a star above your chest on the scan screen. I read that day about ectopia cordis, a condition affecting eight in one million babies, whose hearts grow outside of their chests. You were one of them.

We searched for a way that your life might be saved through surgery, prayed that might be possible. Sadly, the list of problems affecting your heart was too long for any surgeon to attempt to fix. By then you were almost five months old and making your presence felt with little drum beats inside me. Would we continue the pregnancy and bring you to full term even though you would die shortly afterwards? We - your Mum and Dad - had to look deep into our hearts. I realised the longer we had with you, the greater the opportunity we’d have to love and cherish your living presence. And so it was decided.

As you continued to grow, some very special people came into our lives to offer us wisdom. Father James told us the story of Saint Cristopher who saved the life of a baby by carrying him on his back across a dangerously flooded river. Only as he crossed the river, Saint Cristopher realised it was the baby who was saving his life by giving him the courage and determination to get to the other side. Once safely on land, the baby, who was really the Christ child, disappeared. I told Camilla, a practitioner of Nichiren Daishonin Buddhism, I wanted to do my best for my baby and give him all the love I could. Camilla replied that was exactly what my baby would want to do for me. In the Buddhist tradition he was my Bodhisattva or agent for enlightenment. This was another wonderful idea to contemplate while you were getting bigger by the day. I loved carrying you inside me and felt like all your kicks and turns and taps and tickles were like a secret conversation between us. I was so proud when every scan showed how active you were, and your measurements placed you at the top of the growth charts. I have a hunch you orchestrated things so that I felt in good health and happy in spirit throughout my pregnancy.

My darling, I thought I was head over heels in love with you even before you were born, but nothing could prepare me for the joy of seeing your face and gazing into your beautiful eyes. They looked like glowing black pearls, tiny planets from a far off universe. You were baptized straight after you were born, not long after dawn, and I remember flames in the room, although that could have been the drugs they gave me for pain relief.

I had not imagined anything beyond your birth, yet here you were, a bonny baby, doing the normal things that babies do. My darling how can I thank you enough for staying on earth long enough for us to become properly acquainted? We were told your heart was unlikely to beat for even one day. We had fifteen and a half days with you. So I got to know your sweet ways and your gentle, considerate nature. You showed your amateur parents what you needed through patient repetition of expressions and sounds. You were also very brave.  

A week after you were born, we took to you to the Soka Gakkai Buddhist centre, then Sunday mass, and the next weekend we sat beside Suzanne Aubert’s grave while you drank from your bottle. There were many things said about your life by many people and perhaps there is truth in all the interpretations of your life, and yet the mystery of your soul remains. My darling baby JV, you have packed so much value into your life in and outside of the womb. Broadcaster John Campbell sent you a text:

‘JV you are remarkable. And the fact you don’t even know how remarkable you are makes you all the more remarkable – because this is a time when the least meritorious trumpet their own virtues as if they were real. To live beautifully, bravely, both inspiring love and surrounded by it too, and not to be made vain or pompous or self-satisfied by it, that makes you very special indeed. That makes you a gift. And every moment you stay is a moment more in which you remind us all that what matters most in life is how you make people feel. And you make people feel love. Which is the coolest thing there is, JV.’

My sweet baby Jesús Valentino, I miss you terribly and wish to have you awake in my arms again. But I promise I’ll do my best to keep my heart open and not get lost in the pain. I will keep loving you forever. I will always be your mother and you will always be my son. I look forward to seeing you again precious son.


Emma Gilkison is a communications advisor who lives in Hataitai, Wellington with her partner, Roy Costilla who is completing a PhD at Victoria University. Jesús Valentino was their first baby.