Rainbow in our Skye

I had a weird dream the other night. In my dream, Aires, Heaven and I survived the fury of Yolanda but we lost Skye in the storm surge. The fear was so real it woke me up. It took a few more seconds before I realized we did not lose Skye in a storm.

In that short wakeful moment, I thought about the storm that came to our lives. And the rainbow that came after the storm.

Skye was both storm and rainbow. She got us whimpering in the coldness of uncertainty. So many nights were spent not knowing what tomorrow would be. Yet, at the same time, Skye showed us that something as bright as a rainbow would reveal itself.

I remember the afternoons I had with Skye sleeping on my chest. I remember the time we heard her coo as if saying, “Thank you and I love you.” I remember the last time she looked at me as I lulled her to sleep.

When I face difficult tasks, I just whisper Skye’s name and remember how storms come and go. And how rainbows light up the sky.

May you all have a colorful year ahead!

Fork in the road

We all have ours.

The road forks. One goes left, the other goes right. Either way, I don't know where it leads me. Yet, I know, each road leads to something better.

It's funny how things come serendipitously. It used to be phone calls and e-mails. Now, Facebook posts and private messages bring the news. News that put you at a juncture where the road forks.

At the moment, I am just going with the flow, feeling where the ride will take me. But, there comes a time when you need to take the rein and set the direction.

I must admit that I am not sure yet which direction to go, what road to take. My heart says Left. My mind says Right. 

A month from now, I will look back and find out if the road I choose is the one less traveled by.

A year ago

A year ago

We knew not yet

So early on

We booked a room

Where we would spend

New Year’s Eve

Away from the noise

The residue that came

After thoughtless revelry

A year ago

We knew but one

That you were just doing fine

Kicking and active

In a pool of love

In your warm sac

Away from things unseen

That could hurt

Your fragile life

A year ago

We did not know

So we had a blast

At a photo shoot

A lasting moment

In one brief flash

Away from ridicule

Of tainted eyes

And malicious scowls

A year ago

No inkling we had

That you would carry

A burden much harsher

Than firework burns

We were but hours and days

Away from learning

Nature’s most cruel trick

Of life incompatibility

On October 19, 2012, Aires and I learned from an elaborate ultrasound that Skye would probably be born with a chromosomic discorder. We did not know then yet that it would be Trisomy 18 or Edward Syndrome. Two months later on December 15, Skye was born and struggled to live for another five months. She passed away on May 27, 2013.

Dearest Skye

Dearest Skye,

I love you. I miss you. I know that you were given to us for a reason. I am not sure though if I have already fully uncovered what this reason is.

I never will forget you. How you kept me awake until the wee hours? I’m sorry if there were times that I nearly lost my composure. I was just too tired and frustrated. Please forgive me.

I tell myself every day that I am ready to face any challenge that comes my way. You have made me stronger because you made me see and accept my frailties as a person, a father and a husband.

I see and feel your little hands as I wake up each day. How you help me make decisions. How you help me go to the right direction.

Please continue helping me become a better person. But more importantly, help Nanay and me mold your Kuya Heaven into a kind, responsible and caring big brother -- the kind whom you deserve to have.

Love,

Tatay

What matters most

Skye is nine months old on September 15.

Almost four months after she bid goodbye, Skye continues to bind us together as a family. We talk to her. We sing her songs. We ask her every night to intercede for us.

Skye is in our thoughts every day we wake up and before we go to sleep. She keeps us strong when we feel weak. She gives us hope when the horizon gets dark.

When things don't go well as planned, we whisper her name and we take comfort in the thought that an angel watches over us.

We count the days as her birthday nears.We will continue to celebrate her life no matter how short it had been. Because as the song goes, it's not how long we held her in our arms, what matters most is that we had the chance to love her at all.

Sky Hotel and all things Skye

Three months.

It has been three months since Skye bid goodbye.

How do we keep her memories alive? Aires keeps on reading about Trisomy 18, praying that a miracle cure will soon be discovered. She immerses in a renewed advocacy to help women succeed in breastfeeding. She also volunteers at a center for abandoned children.

I think of Skye all the time and thank her for guiding our healing. I get reminded of her through the most inconspicuous ways. At the airport the other, I saw a tow truck with tireguards. On the tireguards are painted the word, Sky. I passed by a side street and there hidden is an inn called Sky Hotel.

Heaven prays every night, asking God to tell Skye to watch over him all the time. He gets excited when he says a baby girl and plays peek-a-boo with those he meets.He asks the most thought-provoking questions. "Why did Skye die? How does Skye become an angel? Why couldn't I play with Skye before?"

We see Skye in baby girls all dolled up by their loving parents. We hear her in songs about life and love. We feel her when we sleep at night. We dream of her in a pretty pink dress, smiling, playing, and most of all without pain.

That's how our healing goes. There is comfort in knowing that Skye's suffering is finally over.

Have you sold a toilet lately?

They are not sales persons. They are ordinary folks plucked from a town that has not known peace or progress.

In the town of Paglat where nine of 10 families have no toilets, Oxfam Philippines gathered volunteers who are willing to learn and help their neighbors have their own toilets. Paglat is a fifth class municipality in the province of Maguindanao. Almost 70% of people live below the poverty line.

The challenge seems simple. Design a toilet that residents can afford. But the product costs between 3 to 10 thousand pesos.

Can the people of Paglat afford this with an average monthly income of only 1,100 pesos?

Called market facilitators, the volunteers underwent a training on sanitation marketing to help them sell toilets. The Center for Health Solutions and Innovations Philippines Inc, (CHSI) designed a highly participatory and creative workshop for the market facilitators.

At first, they thought it was not possible to sell the toilet at its current price. But when they tried their sales pitch with a sample of residents, they all felt ecstatic. Out of 15 residents, 12 already wanted to buy the product.

After the trial marketing, Oxfam and the market facilitators will finetune the product to meet the standards they set for it: affordable, durable and likeable.

The volunteers now call themselves as MMK (Mga May Kasilyas). They are not sales persons. They are not paid to sell toilets. But they all understand now that they are not just selling toilets. They are peddling dreams, safety, health, cleanliness, and most of all, dignity.

Tears for a TV wedding

On TV the other day, Bride-to-be gets a Barbie treatment for her bridal shower, not knowing Fiance is springing a surprise the morning after. She will be married the next day.When the surprise wedding unfolds, Bride gets teary-eyed with Groom's vows.

It was not my usual TV fare but I watched it anyway. I started tearing up too. At first, I didn't know why. But I came to realize it was about Skye.

I did not imagine a wedding scene would make me cry that hard. I would never get to experience walking Skye down the aisle. 

The longing for Skye comes to us at the most unexpected moments.When these moments come, we just let ourselves cry our hearts out.

I will never be the Father-Who-Walked-His-Daughter-Down-the-Aisle but I am and will forever be the Father-Who-Vowed-To-Take-Care-Of-His-Daughter-With-All-His-Strength-and-Love. 

Happy Eight Months, Skye!

The miracle of breast milk

My son, Heaven, would have been formula-fed. I was. I prepared my younger siblings' milk when they were babies. Most of my nephews and nieces were bottle-fed. And TV ads said infant formula make a baby a "gifted child".

But thanks to UNICEF, I learned a lot of stuff about breastfeeding. When I worked for UNICEF, I found myself talking to pregnant women in grocery cashier stalls, markets and malls, urging them to consider breastfeeding. I tried to convince friends and relatives to breastfeed their babies. My wife, Aires, cautioned me that I was sounding too pushy and know-it-all already.

That was when I really reflected on why most women chose bottle-feeding over breastfeeding. Ask a mom about breast milk and she most likely will tell you that it is best for babies. Yet, this knowledge does not translate to actual practice.

I once prepared communication materials for a breastfeeding campaign. We used the headline "The Magic of Breastfeeding." I thought it was brilliant but when I pre-tested the materials to a group of breastfeeding women, I was wrong.

Magic is about waving a wand and making something happen in a blink of an eye. Magic is about spreading dust powder over one's body and flying to Neverland. Magic is about spells and encantations.

Breastfeeding is not like that at all, said the women. A mother and her baby have to work really hard in unison to make breastfeeding happen. If that happens, it is not magic but a miracle.

I had my Eureka moment. I stopped using the "Every mother can" mantra of breastfeeding. I started listening and looking for cues from mothers themselves. Every woman has a unique story to tell. But they share common experiences.

Every mother wishes the best for their newborn. My job is to find the cue that will convince a mother to choose breastfeeding. It usually begins with finding her primary concern. This concern may be simple and menial to complex and clinical.

For my wife, Aires, it was about exposing herself to others. So, we found a way for her to breastfeed our son Heaven even in public places. Thanks to blankets, blouses and brassieres. Heaven was exclusively breastfed for seven months (he was a premature baby) and continued to be breastfed until age 3.

To most women, it was about not having enough milk. So, I started educating women in barangays about the newborn digestive system and comparing baby stomach sizes with calamansi, tomato and egg. On day 1, a newborn baby's stomach is as small as a calamansi. That is why about 1-3 spoons of breast milk is all the baby needs every feeding. That is why a few drops of breast milk is all that flows on the first day. And that is the miracle of breastfeeding.

This is the miracle that happened when our daughter Skye lived for five months. Born with Trisomy 18 condition, Skye was not expected to live even for a day. But she fought for five months and was nourished with the little milk that Aires could muster and the volumes of breast milk donated by kind strangers.

Aires and I saw how a mother's milk can save the life of another mother's child. Our passion to convince women to breastfeed finds another dimension.

But when a woman chooses still to formula feed her baby, I never use the card that reads: "If you love your child, you will breastfeed." She just needs to know that, in the end, it is still her decision that will prevail.

I am just glad that this woman is not my wife.

Boses: Powerful without words

When no words are spoken, you hear it loud and clear.

This is the magic of the film "Boses."

Directed by Ellen Ongkeko-Marfil and written by Froilan Media and Rody Vera, Boses starts as a story of abuse and ends as a story of hope. Left by his wife, a father (Ricky Davao) manhandles his son, Onyok, (newcomer Julian Duque) when he gets inebriated. Onyok is rescued by social workers and taken to a center for neglected and abused children. Traumatized, Onyok has not spoken any word since the abuse started. A chance meeting at the center brings Onyok and a violinist (Coke Bolipata) together.

Onyok turns out to be a music prodigy, learning to play classical pieces under Coke's care. The film begins to make a statement about the power of music to mend hearts and heal broken souls. In the end, the father tries to redeem himself but the film leaves it to the audience to hope that this man can change for his son.

"Boses" finally gets a chance to be seen in commercial cinemas. Filmed in 2008, "Boses" has gone to countless screenings in schools, churches, auditoriums and even outdoor plazas here and abroad.

UNICEF supported the film with a production grant. As UNICEF communication officer, I had the great privilege to introduce the film at its premiere one rainy night in July 2008 at the Cinemalaya Fest held in the Cultural Center of the Philippines. I remember Direk Ellen coaching me to thank the audience for coming to see the film despite the heavy rains.

I have seen many times how "Boses" has touched the hearts of children and adults alike. The film opens from the child's perspective, from inside a closet, hiding from his abusive father. This is what the film asks its audience to do. See and hear an unkind world from the eyes and ears of a child who cannot speak and is now trying to find his voice.

26 and 27

26 and 27 are milestone numbers to us.

26, of course, is Heaven's hello. 27 is Skye's goodbye. 

We can't help but play our "would-have" and "what-if" imagining of a life with Skye. Kuya Heaven will be a wonderful big brother. If you ask Heaven now, what will he do if his sister is still alive. His response is quick. "I will take care of her." How? "I will feed her. I will play with her. I will not punch her."

Nanay will surely dote on Skye. She will exclusively breastfeed Skye. She will dress her up. Skye will definitely be Aires' Mini-Me.

Tatay will be the protective dude. Not even a fly can hurt my Skye. I will have Heaven assist me when I sing songs and tell stories to Skye. We will sing the ABCs and count 123. 

Simple math tells us that 1 is the difference between 26 and 27. But we know otherwise. Between 26 and 27 spans a lifetime. 

This boy is five

This boy is five. He can eat on his own. It may take him about an hour to finish a meal but that also means one hour of vibrant chatter.

This boy is five. He can change on his own. He may not be able to fold his shirts and shorts but he can surely dunk these straight into the hamper.

This boy is five. He can hop on one leg. He may get unsteady and trip occasionally but his sense of balance is remarkable.

This boy is five. He can write his complete name. He may write in uneven strokes but the letters are outrightly legible.

This boy is five. He can draw and paint. His doodles are about monsters, aliens and spaceships but the stories that come with them are just as warped.

This boy is five. He can sing really well. He may have forgotten his Bahay Kubo but he has mastered the first two lines of Lupang Hinirang and the chorus of Won’t Give Up.

This boy is five. He can solve 42-piece puzzles. He may need a little help but he solves them faster than other adults can.

This boy is five. He can remember a lot of things. He may sometimes forget to say Thank You but he never forgets who, what, where, and when.

This boy is five. He always asks why. He can be overly curious but there’s no escaping his inquisitive mind.

This boy is five. He loves to play with other kids. He can sometimes go “This toy is mine” but he knows how to be polite, respectful and kind.

This boy is five. And we can’t wait to find out what he will be like when he turns six but, now that he is five, we are simply ecstatic.

Heaven's angels

Skye would have been seven months today.

Heaven and I passed by the memorial park to leave a pot of fresh flowers. I challenged Heaven to look for Skye's tombstone.

Heaven said: "That's easy. I will just look for the one with two angels."

I am amazed at Heaven's retentive memory. He boasted one time that he is good at remembering things.

After we laid Skye to rest, we had a tombstone prepared to include both Skye and her grandfather, Lolo Cesar. For Skye, her epitaph reads: "A blessing you were. An angel you are. Beloved forever you will be." An image of two angels was also carved on the stone.

On a tombstone with letters and numbers, Heaven remembers the angels. That's exactly how we should remember our dearly departed. We remember the best and most fascinating things about them.

So, on Skye's seventh month celebration, I remember the many times she slept soundly on my chest. I remember hearing her coo. I remember the first night she spent at home with us, how she looked like in her crib, and how a reading of 99 on her pulse-oximeter meant that she was doing well.

And then you realize and accept that even if today would have been her seventh month, she is now doing well in a place where she can sleep soundly, coo all she wants, and spend her nights watching over us.

My therapy

Words are my therapy.

When flood waters turned our lives upside down, I swam in a sea of words to make sense of the havoc. When I had to prove myself as a competent professional, I wove taglines and messages that tickled the imagination. When our daughter Skye came to our lives, I talked to her in prose. When she bid us goodbye, I shared my grief with the rest of the world in my blog posts.

Now that I am trying to heal these wounds and fill this void, I will keep on writing. I will be a wordsmith of life's triumphs and tribulations. I will talk about the mundane and the extraordinary.  I will share my thoughts with those who care to read.

They say words cut like a knife. But to me, words heal.

A door opened

At first, I stood frozen by the door. 

On the floor, across the blue rubber squares, were the toddlers with their weekly visitors. The guests were all busy feeding the kids, reading them stories or playing peek-a-boo. 

Aires, Heaven and I were first-time visitors to CRIBS Foundation, a center for abandoned children. We came to donate a bag of Skye's unused clothes and diapers. Aires and Heaven were drawn immediately to a one-year old girl named Anna who was then under the care of a young female volunteer. Heaven performed roll-overs to get Anna's attention.

Aires then checked out the other rooms and was ushered into a smaller room for infants. I looked after Heaven but two-year old Gabriel found me. Gabriel was playing with a toy phone when he gestured to be carried and put into one of the cribs. Gabriel had been at CRIBS ever since he was born and was left at public hospital by his mother. Nobody knows her whereabouts now. We did not get to find out also if Gabriel was already up for adoption.

Heaven went into the room for older children and found himself playing tag with other kids of his age. For one hour, I played nanny to Gabriel. Gabriel responded well to short words, music, beats and rhythm. He could utter a few distinct words already like mamam (water), bye, and boy.

For one hour too, Aires carried in her arms eight babies one at a time; the last was eight-month old Mary Jane who had an uncanny resemblance with our dear Skye.

We spent one short hour with these kids who clamored for our attention and affection. We could not express what we felt. We only know that we will come back more frequently to see Anna, Gabriel, Mary Jane and all the other kids.

We are not sure if this first visit will lead to a major decision of foster care or adoption. 

But a door has been opened. We cannot just stand frozen at the doorstep.

163 days and 2 minutes

On December 15, 2012, Skye was born at 6:55 AM. She was a Trisomy 18 baby.

On May 27, 2013, Skye bid goodbye. She was declared gone at 6:57 AM. She was 163 days and 2 minutes old.

A week earlier, Skye started getting feverish. She had seizure-like episodes that scared the wits out of my wife Aires. Her pediatrician saw her on May 21. She prescribed antibiotics to manage the fever. Two days later, when Skye's fever persisted, her doctor recommended hospital admission. On May 23, we learned that Skye was battling broncho-pneumonia. Pneumonia is the nemesis of Trisomy 18 babies.

During all this time, Aires took care of Skye without me by her side. I was away working in Davao Oriental. Mommy, Kuya Archie and Kuya Lon were there to help Aires. When I learned that Skye had pneumonia, all I prayed for was for her to wait for me. I came back from my trip on May 25. When I saw Skye, I cradled her in my arms and whispered to her that it was okay now to let go if she wanted to. I managed to be with Skye for two more nights.

I asked Aires to go home and rest. On my first night with Skye, I slept beside her and she had a fitful sleep. On May 26, Skye's doctors were happy to see her progress. They even told us that Skye could be discharged on May 30. Aires and I were ecstatic to hear this. We were so relieved that I even took Heaven to see the movie Epic while Skye and Aires had their bonding time that Sunday afternoon.

That night, however, Skye had fever bouts again and became fretful. From 11 pm till 4 am the next day, I could not pacify Skye. She must have gotten tired that she fell finally asleep a little after 4 am. I waited till the vitals on her pulse-oximeter machine became stable before I decided to rest too. Our next feeding time was at 6 am so I slumped on the couch beside Skye and fell asleep.

At 5 am, I checked on Skye and she was sleeping fitfully. I went back to the couch and fell asleep.

At exactly 6 am, I woke up just as the nurse came in to check on Skye. Things then all happened in a blur. The nurse freaked out and ran out of the room. I freaked out too and went to see Skye. She looked asleep but her whole body was cold. When the nurse came back, a whole team of doctors, nurses and orderlies came with an ECG machine or the machine that revives patient's heartbeats.

I stepped out of the room to call up Aires. She sounded so calm while I desperately tried to hold it up together. At around 6:15 AM, I talked to Skye's pediatrician over the phone. She gave me the news that Skye was gone and that the doctors were performing the perfunctory cardiopulmonary resuscitation.

I watched as the doctors checked for any pulse rate. There was none. They marked Skye's official time of demise at 6:57 AM.

Several nurses at the NICU where Skye stayed for two months came to say their goodbyes. When they left, it was just Skye and me in the room as I waited for Aires.

When Aires came, she kissed Skye. Aires was a portrait of strength as she listened to what happened that morning.

Papa came too to comfort us. While we arranged for the funeral service, Papa and I escorted Skye to the morgue, as Aires settled the hospital bill.

The service came just before 12 noon. Aires rode with Skye at the service's van and went on their way to the memorial chapel. I was supposed to drive Papa home when Aires called me up to inform me that the van overheated.

I did not get to take Papa home and went to fetch Aires and Skye. Aires and I managed to laugh, saying that Skye still found a way for us to spend a few more hours together as we braved the traffic going to the memorial chapel. We knew that moment that Skye's life must be celebrated and that's exactly what we wrote in our invitation to loved-ones and friends --- a celebration of 163 days of a short but inspiring story of a child who defied the odds.

It has been only three weeks since we laid Skye to rest. Writing about Skye's final goodbye is part of our family's journey to healing. Skye lived for 163 days but we will keep her memory alive for the rest of our own days.

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.

Happy for Skye

It was raining when we laid our daughter Skye Czarina to rest yesterday. We wore white and had white and pink balloons. My wife Aires and I spoke of our difficult journey but nothing could compare with what Skye herself felt all 163 days of her life.

But many people also asked how Skye's big brother, Kuya Heaven, our four-year old son, was coping.

Heaven nearly threw a big tantrum at Skye's funeral. He was fidgety and asked to be taken back to the car. At first, I thought he was feeling uneasy, seeing Skye for the last time. I thought it was a ruse to escape it all.

To avert a complete meltdown, I took him back to the car and made a deal --- a new toy for his good behavior. He relented a few minutes later. In those few minutes, I managed to ask our son if the reason he wants to stay in the car is because he does not want to say goodbye to Skye.

He said: "No. I want to stay in the car because it is dry here. Out there, it is wet and messy."

"But what about Skye? Aren't you feeling sad?"

And Heaven said: "Tatay, I'm happy for Skye."

True enough, for the rest of that gloomy morning, Heaven did not cry. He looked at Skye one last time and asked: "Why is Skye frozen?" People crowded around the hole and Heaven hollered: "Excuse me, I want to see Skye." When the hole was finally covered, Heaven gamely sang Skye a "Rock-a-by" lullaby.

It rained. It was wet. It was sad. But if Heaven could, in all innocence, say that he is happy for Skye, I should also feel the same.

Goodbye, Skye!

Today to rest we lay you

Where the sky roofs the ground

Where hundreds more find their peace

With grasses and acacia trees

You will find it dark beneath

But above is yours to keep

Your flesh on earth remains

Your soul in finite time will live

You will hear us cry

You will hear our prayers

You will know why

You we love and care

Today an end begins

But hope anew springs

Goodbye’s but another way to say

My child, see you soon someday

Won't give up on us

It was unanimous.

When Aires and I were planning to do a slideshow in honor of our dear Skye Czarina, we chose Jason Mraz' song, "Won't Give Up".

"I won't give up on us
Even if the skies get rough
I'm giving you all my love
Still looking up, still looking up."

Many of our friends and loved-ones say they are touched and inspired by Skye and by how our family coped with Skye's condition. It gives us immense satisfaction that we are able to reach out to others. If after reading about Skye, you look at your child with much profound love then Skye has truly served her purpose in life.

Aires and I had so many talks about what God has planned for us when He gave Skye to us. We knew there were many lessons to learn. I guess just like in Jason Mraz' song: "We had to learn how to bend without the world caving in."

Aires and I had to learn what we've got, what we're not and who we are.

Goodbye, Skye, Goodbye

Dearest Skye,

In a blink, you were gone. I was just an arm’s length away and you went without making any fuss. You did not make my heart go wild. You did not make my knees go weak. When I woke up, your goodbye had gone by.

I am awed how you planned your exit. You waited till I came back from a land far away. And for this I am forever grateful. You gave me the chance to spend another night with you. You gave me the chance to cradle you in my arms one last time.

What an obedient child you were. I whispered to you that it was all right to let go. And you did. You had to let go.

But I can’t. I will never ever let go of your spirit. You will be here forever with Nanay, Kuya Heaven and me.

You may have gone. But what you left behind will stay with us until our own goodbyes.

Love, Tatay

Happy number

133.

Today, Skye is 133 days old or 19 weeks.

133 is a happy number. If I add the squares of each digit and do the same for the corresponding sum and do the same for the next, the sequence ends in 1. That's the formula for happy numbers.

Math amazes me. And that's weird, coming from somebody who took Communication Arts because he did not like math. Math amazes me because it is exact.

But Skye amazes me more. Her extra chromosome made her condition exactly to be a Trisomy 18. Yet, Skye has defied the odds and survived beyond what was expected of her. Having her around for 133 days has brought us immense joy.

Indefinite. We don't know exactly how much longer Skye can stay with us. But we are sure it is somewhere between indefinite and infinite. If Skye lives for 10 to the nth power, that surely is a happy number forever.

Pretty in pink

Skye was pretty in pink when she met her neonatologist for the first time since she was discharged from the hospital, and for the last time since she would be referred to another pediatrician who practices near us.

Driving Skye all the way from Marikina to Manila is no mean feat. We bring with us her oxygen tanks and take extra precaution lest Skye contracts any virus that flies unseen around us. We are no germophobes but we simply don't want Skye to get sick.

The two-hour trip to Manila was problem-free. Skye was asleep the whole time. Kuya Heaven was his usual playful self.

Heaven and I did not get to go with Skye to see her doctor. We dropped off Nanay and Skye while we searched for a parking space. But we found ourselves just moving in circles looking for a place to park. Skye finished her appointment with her doctor in a jiffy and I had to be content with hearing the news from Nanay.

What good news it was! Skye's doctor was very jubilant to see Skye's progress.  Skye gained 400 grams, weighing now at 2.1 kilos. Her complexion is rosy enough, indicating no iron deficiency. Her lungs appear to be clear, without any infection. Skye is active, her limbs moving in bursts of energy.

The doctor recommended more frequent feeding sessions, making us worry about our milk supply. Aires is not lactating that much milk anymore and we rely on breast milk donations for Skye's sustenance.

But as we went home we set aside our worries. We held on the good news that Skye, so far, is in the pink of health.

Love letters

Dearest Skye,

You are now 110 days old.

Most parents count months. Your Nanay and I count days. This is how we accepted what God has given us.

We stopped asking why you were born with an extra chromosome. You are called a Trisomy 18 baby. One in 6,000 babies gets this condition for causes unknown to doctors. All they know is you are “incompatible with life.”  

You were still inside Nanay when doctors told us something was wrong. Nanay had too much water. You were too small. Your fists were clenched.

We cried after reading about Trisomy. We kept our hopes up but feared for the worst.

The fear became real. When you were born, your doctor asked my consent to put a tube into your mouth to help you breathe. I said “Yes.” I wanted to give you a chance even if the odds were against you. Trisomy 18 babies especially with heart problems do not make it. You have three holes in your heart. We did not know if you could make it.

You survived the first hour, day, week and month. You spent two months at the hospital. Your doctors were amazed how you fought for your life. One doctor thought you would live for only 45 days. I did not ask her how she calculated it. We were just too excited and anxious to take you home.

At home, we monitor your oxygen level, suction secretions and insert a feeding tube. We keep watch 24/7, taking note of your vital signs. We are humbled by the kindness of strangers who donate breastmilk. Their gift of nourishment has helped you reach your first 100 days.

Today, we continue counting. We treasure every second, minute, hour, day and night we have with you. We love you very much.

Dearest Kuya Heaven,

You are almost five years old now. We waited for you for six years.

You, however, can’t wait to have your next birthday party. You want a Ninja Turtles party. You will dress up as Leo. I will come as Master Splinter.

Though we argue every day, we end up every night praying for good dreams for you, good strength for me, good protection for Nanay and good health for Skye.

You are a wonderful Kuya to Skye. I feared before that you would become jealous of Skye but you held your own. You can’t wait for Skye to play with you. You always whisper to Skye to grow up fast so we all can go to Disneyland.

You will be in Senior Nursery soon. Thank you for making us proud. Thank you too for telling people that you take after your Tatay.

Dearest Nanay Aires,

You are the strongest woman I’ve ever known. You say you’re not but look at our children.

Heaven is as goal-oriented and Skye as resilient as you are. Knowing what you want and enduring life’s challenges are your strengths. Heaven claims he takes after me. But the truth is --- Heaven and Skye are a lot like you.

After Skye was born, my first thought was you. How would you take the news? But when you held my hand and said that you fully accepted what God gave to us, I just lost it. You let me cry. You said Skye was given to us to keep us together. She came when we were at our weakest, when we almost gave up on each other.

You are so strong that you made a leap of faith. You resigned from work to be with our children. Please don’t ever regret doing this.

You break down sometimes. You owe that to yourself. You asked me one night if I still get depressed. I also have these moments when I wished things were different.

But these moments have become brief and scant. I don’t want to dwell in the what-if’s of life. I just want to live a life with a special daughter, a smart son and a super woman --- one day at a time.

Love,

Tatay Nilo

Skye's first 100 days

When our son Heaven was born on July 26, 2008, we called him our miracle. My wife Aires and I waited for six years for Heaven.

When our daughter Skye was born on December 15, 2012, we called it a miracle that she survived her first hour. Aires and I waited if Skye would make it through.

Both Heaven and Skye are APAS babies. APAS stands for anti-phospolipid anti-body syndrome, common among women who have difficulty getting pregnant or carrying a full-term pregnancy. Aires endured countless reproductive immunologic treatments to see the pregnancies through. Heaven was born at 31 weeks; Skye at 34 weeks.

There was much excitement with Heaven. With Skye, trepidation. At 24 weeks, our doctors suspected a chromosomic disorder. Aires had too much amniotic fluid. Skye was too small for her gestational age. One particular ultrasound image revealed a clenched fist.

We Googled "clenched fist ultrasound pregnancy." The results were heart-breaking. For the first time, I came across the term, Trisomy. Trisomy refers to babies with an extra chromosome. There are many types of Trisomy. Skye's turned out to be Trisomy 18, a lethal trisomy.

The more we researched about Trisomy 18, the more uncertain we were about the pregnancy. Skye's condition was confirmed when she was born. Her neonatologist cited clinical impressions: small face, low-set ears, clenched fists, rockerbottom feet, weak cry. Only a chromosome analysis could confirm the condition. The test came two days later. The geneticist confirmed that Skye has Trisomy 18 or Edwards Syndrome. With it came another confirmation that Skye has three holes in her heart.

"Incompatible with life." This is the most common description for a Trisomy 18 baby. About 95% of them do not live beyond the first month. They die due to respiratory or heart problems.

Skye survived the first hour, first day, first week and first month. And now her first 100 days. We too have survived sleepless nights. All we wanted then was to take Skye home.

We no longer wait if Skye would make it through. We just treasure every second, minute, hour, day and night we have with her. To us, Skye is the miracle of all miracles.