Foolish Heroes.

It was gloriously ugly. When I saw that face, my own shock surprised me. In paediatrics, it is called a gargoyle facies, which refers to the typically gargoyle-like, coarse facial features of a child with a genetic disorder called mucopolysaccaroidosis. The child was sleeping soundly in a cot, her thumb in between horrendously large teeth which were housed in thick lips in an oversized head. A tired, defeated figure sat vigil next to her.

It is a common sight in Paediatrics, to see that tired, defeated figure next to a sick child.

“She was like this since birth. It’s a genetic disorder. Hers is type 3, the most severe kind.”

“May I ask,” I said tentatively, “why she’s in hospital today?”

“Don’t you know? Children like her lack a particular type of enzyme in the body. That’s why she needs to come to the hospital for a special infusion every 2 weeks. It’s supposed to be a weekly infusion, but we can’t afford it. We just can’t afford it.”

“How much do her medical fees cost?”

“A lot.”

“A thousand for each infusion?” I thought it would be safer to make an overestimate.

“Each infusion is five thousand dollars.”

I stood, stunned. Five thousand dollars. It took me a while to take in that figure. That is ten thousand dollars a month.

“We’ve used up almost all our subsidees. And it only helps her health marginally. But I don’t know, things could have been worse. She’s had them since she was 2 years old, it’s a huge drain on our family.”

“How old is she now?”

I looked at the large child sleeping in the cot and thought she could have been four or five.

“Eight.”

Later, I read that children like her live till only about ten years old.

I stood there, marvelling at the tragedy and beauty of it all.

A tragedy, because it was profoundly sad to see not only the child suffer, but the entire family suffer. “It’s a huge drain on my husband and I. We have one other child. It’s just, so much money. We even wrote to the pharmaceutical company to give us a discount.”

A tragedy, because the child would not get better, and would die eventually,soon.

Yet, it was beautiful, because in spite of it all, they put in their best for her. They put in everything they had for someone who could have no practical value in this world of pragmatism and logic. They put in their all because they loved her.

Foolishness, would be what the world would say. What a foolish, impractical love.

“She can’t feed herself, or dress or get up by herself from lying down, but she can certainly still smile, her elder sister plays with her. She can express herself when she wants to watch television or eat.”

A few nights ago, I met up with the mother of a previous 3-year old patient I had met a year ago. Mdm S and I had become friends and I text messaged her one day to ask how her son was, and how she was doing. “Back in the hospital,” was her reply, “you texted me at the right time.”

I went to visit. We met to pray. In spite of steroids, her son was swollen all over again. But he was in good spirits.

“Dear,” she said to her charming son, “Go and sit on Jiejie (big sister) Wai Jia’s lap.”

He crawled into my lap. Just for entertainment’s sake, I told him a story off the top of my head, making it up as I went along.

“ONE DAY,” I said in my Super-Excited, Hyped-up Storytelling Voice, “THERE WAS A BOY NAMED…. NAMED…. E!!”

He giggled. He was the protagonist of my story.

“ONE DAY, E WENT TO THE ZOO!! AND IN THE ZOO, WAS A TIGER!! A BIG RED HUNGREEEEEE TIGER!!!”

He was stunned.

“ONE DAY, THE TIGER SAID TO E, ‘OH E, I AM SOOOO HUNGREEEEE. WHAT SHOULD I EAT?’ “

E froze. From being all excited and wriggly on my lap, he suddenly froze.

“So E, what do you think the tiger wants to eat?”

He was very very serious.

” AND THEN THE TIGER LOOKED AT E WITH VERY HUNGRY EYES AND THEN HE SAID, ‘ E, CAN YOU GO WITH ME TO MAC DONALDS AND BUY ME A HAPPY MEAL?!!”

The three of us doubled up with laughter. And I couldn’t believe I told such a silly story. He burst out laughing, giggling, rolling in peals of joy.

It was only later that his mother told me, he had never had a Happy Meal before, had never had Mac Donalds before. Because of his condition, he has a salt-restricted diet. Silly me, I thought, what a story to tell a kid with nephrotic syndrome. You should’ve known, Wai Jia, I told myself. E had had multiple admissions to the hospital for relapses.

I looked at his mother, saw her incredible strength to continue trusting in God’s goodness even when things seemed hard, or unfathomable and thought to myself- what a remarkable woman. She played with E with a reckless, pure kind of love. And it was clear, that E loved her to bits. At one point as she teared, E stood up from his cot and asked us, “Mummy, what are you doing?” It was like he knew, and understood. He is 3 years old.

I met another lady, whose child was yellow and had a huge scar across his chest.

“You know,” she said in front of her 12-year old child, I always wondered what it would be like if I had let him go. I mean, do you know how much suffering he and I have had to go through?”

She wouldn’t stop talking. In the end, she talked for almost an hour,non-stop.

“My husband is bitter at me, that I chose to let my child have the operation when he was born so he could live. My husband is bitter that I didn’t let my child go instead. My mother-in-law is angry with me because I don’t allow her to give traditional chinese medicine to my son- the doctor told us not to mix eastern and western medicine by ourselves, lest there be any side effects. My medical subsidees are almost completely depleted. I had to quit my job. After ten years of looking after him, I thought I could return to work but now… he’s sick again. He keeps getting sick, what am I to do? I have 2 other kids… my husband still cannot accept the fact that he has a 12-year old son with this condition. I told him, if he can’t take it, then he can walk out, but I’m staying, I’m here to take care of my children. But I often ask myself, whether I made the right choice, whether perhaps, I should have let him go.” Her child was listening.

She was worried, tired and weary. But she is also a mother, a warrior, a fighter.

It made me wonder what marriage is, what children are to us. Everybody has children, with hopes of attaining that beautiful picture of a complete family. But what if something goes wrong? What if my child is born with a genetic disease which will only deteriorate with time? What if my child develops a disease which keeps relapsing? What if my child’s condition affects our lives so much that our marriage becomes tested?

At the side of every bed in the paediatric hospital, is often the figure of a woman of steel.

Her name is Mummy.

To all the mothers who have given their lives up for another, who have demonstrated what it is to die to oneself so another may live, who have exemplified the love of God through His son to us, I salute you. I just want you to know that you have made our world that much more humane and real and beautiful to live in. You have shown appreciation for the fragility and preciousness of life, and have lived with a spirit so large and generous only the hardest of hearts would not be moved.

And although so many of you face the similar problem of feeling discouraged by your husbands, I want you to know that God is watching over you. God sees that heart that wanted to save that precious life He calls His own, which gave utmost respect and dignity to a life He created. And though the world may not see every heartache and every tear, God most certainly counts your life as precious and your calling as a Mother most worthy to be praised. Who else would, with such abandon, love another so selflessly, thoughtlessly and recklessly, like a laid down lover. Like a laid down lover.

Foolish in the eyes of the world, just like how He was made a fool for our sakes. Yet, ultimately precious and prized in God’s eyes.

So I salute you. Thank you for teaching me what it means to love, to lay down one’s life for another. I don’t know if I could do the same. You are amazing.