Tumultuous

(Original, un-edited version of the story that appeared in Good Housekeeping-June 2013 issue)

“Tumultuous.”

“How do you spell that Daddy?” the nurse asked.

At the hospital’s NICU where our daughter Skye was confined, I overheard the nurses looking for the best word to describe what fathers of premature babies feel. So I slipped the word to one of the nurses. The nurse keyed in the letters on a mobile app and exclaimed that she just found the perfect word for her assignment.

Fatherhood has been a tumultuous journey for me. When I was young, my friends said that I would make a great father someday.  During gatherings, I was likely the one taking care of and playing with their kids. I did not imagine that it would be this difficult.

My wife Aires and I waited for six years before our first child Heaven was born. Aires has a condition called anti-phospholipid anti-body syndrome (APAS), common to women who have difficulty getting pregnant or carrying a full-term pregnancy. Her immune system produces anti-bodies that reject the pregnancy. She endured countless reproductive immunologic treatments to see the pregnancy through.

When Heaven was born in 2008, I knew that my someday dream had come. Being an APAS baby, Heaven came ahead of schedule at 31 weeks. I touched Heaven for the first time when he was still inside the incubator. I caressed him, believing that my warm touch could heal. I tried to be the source of strength for Aires and Heaven.

Heaven completed our family. He made a father out of me. But the journey was not over yet.

In 2012, we learned that Aires was pregnant again. We thought this would be easier. But midway to the pregnancy, we learned there was something wrong. Aires had too much amniotic fluid. Skye was very tiny. Ultrasound imaging showed clenched fists. These were symptoms of a chromosomic disorder that could only be confirmed on delivery day.

Skye came at 34 weeks. What we feared came true. Skye has a Trisomy 18 condition. She has three copies of chromosome 18, instead of the normal two. Among the clinical impressions are a small face, low-set ears, clenched fists, rockerbottom feet, weak cry, breathing difficulty and mental delay.

Trisomy 18 is considered a lethal trisomy. About 95 percent of babies die before the first month. Skye also has three holes in her heart. Our hope that she would survive dimmed further.

The decision to let Skye live rested on me. I allowed the medical team to put a tube into Skye to help her breathe. Despite the odds against her, I gave Skye the chance to fight it out.  Skye now belongs to the very few Trisomy 18 babies who lived beyond the first month.

Skye is now almost six months old. We keep watch 24/7, monitor her oxygen supply, suction secretions and feed her through a tube with breastmilk donated by kind strangers.

We also spend quality time with Heaven who has been a doting brother. He performs small skits for Skye and whispers to her to grow up fast so we can all go to Disneyland.

Tumultuous is my fatherhood experience. But it pales if compared with what Aires went through.  My wife is the strongest woman I have ever known.  It takes strength to leave her beloved work as a top bank executive to be with our children. She thinks otherwise, saying she still cries and feels depressed sometimes.

I cry too. I have moments when I wish things are different. But these moments have become scant. I want to rise above life’s tumults. Enjoy life with a strong woman, a smart son and a very special daughter. Soon, “husband” and “father” will be words that are easy to spell.