The most beautiful sea
hasn’t been crossed yet.
The most beautiful child
hasn’t grown up yet.
Our most beautiful days
we haven’t seen yet.
And the most beautiful words I wanted to tell you
I haven’t said yet...
For years what captured me was the last line, an eminently for-all-time quotable quote for those in love, especially those who find themselves in what could be termed ‘impossible love’. Until last Monday.
Last Monday I actually saw the most beautiful child.
I used to think that there can be no children more beautiful than mine. I therefore glossed over Hikmet’s ‘child-line’ in this poem or thought of it as metaphor for innocence and the childlike quality that’s so endearing in the first flush of love. I am aware also of that telling observation about the Loris; that to the mother, her child is a gem. There are so many things about beauty to talk about. It’s in the eyes of the beholder, we are told. Beauty is truth, John Keats opined. Words can craft beauty out of things that are not pretty. There is a lot of illusion and self-delusion in the consideration of beauty.
It’s a lot of vague and transient things and notions that float around for us to pick and choose at our pleasure. Last Monday it all came together and I got a length, breadth and depth version of beauty. Tangible.
Beauty came with a name. Uma Shiny Fernando. She is six years old. She came in the arms of her father, Pradeep Fernando. Pradeep Fernando is a single father, I later learnt. No, he is not a widower. Pradeep Fernando is a sculptor, he told me: mama moorthi shilpiyek. I haven’t seen his work but I can’t think of any sculptor having crafted anything more beautiful than the precious little thing he was carrying. Uma Shiny Fernando is a special child. She suffers from a rare disease I had never heard about until her father told me. Goldenhar Syndrome. The little child had breathing difficulties and had to depend on a tube-like contraption. She didn’t say a word and didn’t have to.
Her father spoke softly. She takes only liquids. She’s already been through 13 operations and I have to find Rs. 30,000 a month for her medicines.
My children are so blessed (I had to say this).
Shiny is a beautiful child. I didn’t know how to help and even though some money passed hands I felt it was not enough and sadly that nothing would be ‘enough’ and that even the ‘something’ that could mean more than ‘something is better than nothing’ was beyond me.
I went to the Internet. Here’s what I found. Goldenhar Syndrome is also known as Oculo-Auriculo Vertebral (OAV) Syndrome and is a rare congenital defect characterized by incomplete development of the ear, nose, soft palate, lip and mandible, usually on one side of the body. Additionally, patients can have growing issues with internal organs, especially heart, kidneys and lungs with the particular organ either not being present on one side of being underdeveloped. There can be severe twisting of the vertebrae, deafness/blindness in or both ears/eyes.
Here are the positives. The intellect is usually normal. Most abnormalities are amenable to surgical correction and do not require specific treatment. Most affected individuals have a good quality of life.
Last Monday, let me repeat, I saw the most beautiful child. I was also privileged to see the most beautiful father. Not just beautiful. He was proud. Unbowed. Determined. And in his eyes I saw a kind of equanimity that is probably rarer than the condition little Uma Shiny Fernando was suffering from.
I don’t like to take anything away from the beautiful little girl, but some perspective can’t do harm, I think.
Last Monday I stepped on to Galle Road and came face to face with the ugliest faces in this country. They were splashed all over the walls. The city walls were carrying a lot of money, as is usually the case during elections. They were carrying trees in fact, considering that a big spender on posters would, according to Environment and Natural Resources Minister Patali Champika Ranawaka, cause around 300 big trees to be felled. What a waste, I thought.
I am not sure how much corrective surgery would cost or the total annual cost of treatment thereafter. My sense is that it would be a fraction of what one single candidate would spend over the next few weeks.
There’s a beautiful little girl living with her sculptor father at the following address: 12/20 Roxywatte, Galle Road, Colombo 6. I know beauty is in the eyes of the beholder, but I don’t think it will harm anyone to get some sense of beauty, perspective and sense of proportion about beauty, life, what’s important and what’s not and a better understanding of the gems lying around us that we don’t get to see.
Last Monday I saw the most beautiful child. She hasn’t grown up yet. Perhaps she never will. Is that good or bad? I don’t know. Perhaps we never will know.