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.

If Only

The littlest of things hit me first. Her mittens. A cotton ball. A gauze pad.

Then, I see the toys, the books, the music box and the empty crib.

No matter how hard I try to fight it, I start crying. I miss cooing to her, lulling her to sleep, singing "I Will Be Here".

Then, of course, the pictures. I can't help but think of my "what if's" and my "if only's".

I imagine years from now how we will remember Skye. If strangers ask: "How many children do you have?" Will I say: "We have a son but we had a daughter too."

This afternoon, we gathered our relatives at the memorial park to hold the last of the traditional nine-day praying rites for the departed. Aires asked me to read a poem for Skye. It was a poem that I started writing in January but did not get to finish till today. I almost did not finish reading it because I was choking midway but I mustered whatever strength was left in me so I could reach the end.

KUNG PUWEDE LANG

Kung puwede
si Tatay na lang ang kukunan ng dugo
Masakit kasi talaga bawat tusok ng karayom

Kung puwede
ibigay ni Nanay na lang ang kanyang puso
Para di na mapagod munting sa iyo

Kung puwede
si Kuya na lang ang hihinga para sa iyo
Para mapuno ng hangin ang baga mo

Kung puwede
kami na lang ang papasan ng lahat
Para mabawasan ang iyong paghihirap

Kung puwede
lang sana bakit naman hindi
Kaso hindi nga puwede

Kung puwede
lang sana tumagal pa ang pagsasama
Para buo pa ang ating pamilya

Kaso hindi nga puwede
Kaya tinanggap na lang namin
Na nagpaalam ka na at isa na ngang angel

Kung puwede
lang sana aming ngayong hiling
Bantayan mo kami, umaga hanggang gabi.

IF ONLY

If only Tatay could give his blood

so you wouldn’t wince for every prick
Knowing what’s wrong won’t be such a fight

If only Nanay could give her heart
so that your heart could take a rest
Pumping blood won’t be such a quest

If only Kuya could breathe for you
So your lungs would have air
Breathing to live won’t be such a race

If only we could
we would have taken your place
So you needed not endure the pain

If only we could
No reason we should not
But as it was it could not be

If only we could be together
much longer, much farther
and stay complete as a family

But alas it could not be
So we just embraced the truth
That you are gone, an angel you've become

Now if we can just ask
for one final request
Please be with us, night and day.

4 AM wake up call

I woke up at 4 AM today.

The alarm on my mobile phone went ringing that early. I did not remember setting it that early last night. When I came to my senses, I figured out that the alarm is set to repeat at 4 AM every Thursday.

Last week, it was Thursday when we laid Skye to rest. I set my alarm that early last week to attend to last minute tasks for Skye's burial.

It has been a week since we dressed up Skye in her stunning white dress and gave her our final respect. It has been a week of prayers and remembering.

I remember staying up late to watch over Skye. I would take the night shift so that Aires could take her rest. There were nights when all Skye wanted was to be rocked and cradled in my arms for hours. She did not want to be put down in her crib.

I remember Skye's bath time in the middle of the day. She would cry a bit but would relax thereafter and fall asleep on my chest. She liked the warmth and the rhythm of my breathing.

I remember attending to both Skye and Heaven at the same time. Whenever I wrapped Skye in her blanket, Heaven would ask to be wrapped in the same way. He would play pretend that he was also a baby.

I remember being afraid at first when we got Skye finally home. I also remember getting confident as the days went by, putting a feeding tube into Skye, monitoring her oxygen level and checking out her vitals.

I remember what Aires felt when she gave up her job to take care of Skye. It was one of Aires' ultimate sacrifices. It was a selfless act, one that I would never ever forget.

I woke up at 4 AM today, remembering Skye. I woke up and looked at Heaven and Aires, both still asleep, recognizing that this is the family I have, love and protect for the rest of my life.

Reading time with Skye and Heaven

A day before Skye passed away, I bought Heaven a couple of Disney comics magazines, Wall-E and Ratatouille. We did not get to read these two until after we laid Skye to rest.

Since then, Heaven has egged either Nanay or me to read the stories to him before he went to bed.

One time, Nanay read Wall-E to Heaven. Nanay took her celphone and flashed a photo of Skye on the screen. Heaven asked: "Why did you put Skye's picture on your celphone?"

Nanay said: "So she could also listen to the story of Wall-E."

Nanay continued reading but occasionally her phone would go to sleep mode and Skye's photo would disappear. Each time it happened, Heaven would caution Nanay: "Hey, Skye can't hear the story, Nanay."

To this, I say, Skye can hear us, Heaven. Loud and clear.

Goodbye and hello

It has been a week since Skye abruptly said goodbye.

People ask us how we are. It feels a bit weird to say that we are okay. But what does “okay” mean?

We are okay because we know Skye is in a good place now. She no longer has to endure the pain and discomfort Trisomy 18 had given her.

We are okay because we know that Skye experienced the best love and care we could ever give. It was five months of hits and misses, but mostly hits.

We are okay because Skye taught us the lessons of true love, sacrifice and humility. We are deeply humbled by what God gave us, what we went through as individuals, as a couple and as a family.

We are okay because, knowing that Skye is also okay, we can move on. We can continue giving her big brother Heaven the best love and care we could ever give.

We are okay despite crying from time to time. We know that we made the right choices for Skye. We did not become jaded or angry. We have begun the road to healing. We can’t say it is smooth-sailing from this day on but we know wherever this journey takes us, Skye is our guiding star.

Come to think of it. We may have said goodbye but every day since has been: “Oh, hello up there, Skye!”

Four dresses and a funeral

Kikay!

We made Skye very girly for her final hurrah.

At first, my wife Aires planned to dress up Skye in a simple pink shirt. We did not get to shop around for girly dresses when Skye was born. All Aires had was a couple of long-sleeved shirts she bought when still pregnant with Skye. The rest of Skye's wardrobe was a bunch of sleepwear.

Our dream of dressing up our daughter took a backseat when she was born with Trisomy 18. From the moment she was born till her goodbye, our main concern was to extend her life. We did not get to play dress-up princess.

During Skye's wake, we did just that.

We bought Skye four dresses. On Day 1, Skye was garbed in a white dress with a large bow at the waist. On Day 2, she wore a short-sleeved ecru dress with flowers. On Day 3, she wore a pink party shirt and a flamboyant hot pink tutu. Her shirt had a heart with the word "Love." It was Skye's last night and she made a splash at her going-away party. All well-wishers said Skye looked like a lovely doll.

On Day 4, the day Skye was laid to rest, she wore a white gown with sliver of silver highlights. She looked like an angel.

Every night since, Aires would ask me if Skye is happy now. With four dresses during her wake and funeral, I'm sure Skye is more than happy, she must be tickled pink.

Skye is in me

When Heaven first saw Skye in her coffin, he asked: "Why is Skye not waking up?"

"She is gone," I told him.

"Does that mean there is no more life inside her?" Heaven asked. I nodded in agreement with him.

"What will happen if there is no more life inside me?"

"Then, Nanay and Tatay will be sad."

Heaven paused, taking in all that I said. Then he blurted out: "Okay, let's go to the grocery."

"Why?" this time the question came from me.

"Let us buy a new baby. I want a boy and we will call him Claude."

That was how Heaven looked at Skye's passing away. To our four year old son, death is simply the absence of life and the beginning of something else.

On the day Skye was laid to rest, Heaven, Aires and I followed the hearse carrying Skye. Heaven asked his many why's again. "Why is Skye riding all by herself?" "Why are there many cars following Skye?" "Why are we driving so slow?" "Where is Skye going?"

So Aires prepped Heaven anew. She told him that Skye would be staying with Lolo at the memorial park; that her body would be buried under the ground; that her soul, just like Casper the Ghost, would go to heaven.

"So... Skye will be in me?"

"Yes," said Aires. "Skye is in you. She will watch over you, day and night."

"I won't be scared anymore of the dark."

That night, for the first time, in many years, we slept with the lights off because Heaven is no longer scared, because he knows Skye is in him, shining brightly in the dark.