Wednesday, September 28, 2011


I meant to write this as soon as I started this blog except that with all the other things that I had to attend to, updating this post had taken a back seat.  But because Nina will soon be celebrating her 2nd birthday, it’s only but fitting that I put up this post before she celebrates another year.

I belong to this wonderful e-group of “newlywed” couples called n@wies.  The group started as a resource group for couples who are in the process of planning out their weddings, hence the name Weddings At Work or W@W.  Once the wedding preparations end, you then transition to the Newlyweds At Work (N@W)  of which I am now a member.  This wonderful group allows members to share experiences and pointers about almost anything from parenthood, sale alerts, to travel tips.

It is to this group that I share details of Kuya’s first birthday and his many milestones as well as my many concerns and prayer requests all with regard to Janina’s condition.  At one point, I posted a rant about how I felt about not being able to provide Janina with a big party for her upcoming 1st birthday.  You see, I had shared reviews about Kuya’s 1st birthday party – he had a big one complete with balloons, a magician, games, lootbags and lots of guests.  In as much as we wanted to give Janina a big party of her own, she had just come from surgery and we needed to be practical with our spending habits.

Little did I know that the post had become a catalyst for the group to put together a special gift for our little girl.  One evening, my friend Benz, whom I had known in college (and coincidentally was the founder of the group) dropped by the house to deliver a breastfeeding pin/badge that she made for all breastfeeding moms including myself.  To my surprise, she was not alone – several n@wies were with her and they had camera’s and video cams with them.  They came not only to give the badge but also to present us with a letter:

They practically took care of everything and all we needed to do was pick out a date, the theme and finalize details with all the suppliers they had contacted.  Needless to say, I was overwhelmed-speechless with all the emotion that was going through me.

The day before the party, Benz contacted me to check on how things were.  Her call came as I was about to leave to pick up Janina’s dress from the dressmaker and she volunteered to make arrangements for the dress to be delivered to the house instead.  When the dress (or should I say gown) arrived, along with it were dozens and dozens of gifts and cards and letters from n@wies who wanted to make sure that Janina had a grand celebration.   It was like Christmas all over again – multiplied several times more for us!

Nina surrounded by all her gifts from the n@wies

My little girl’s party was nothing but big – it was GRAND. 

It was more than I could have ever hoped for her to have.  Truly she is blessed to have so many loving people around her and we are blessed as well to have been given such a beautiful child to take care of and to inspire us to share a part of ourselves to others.

Nina surrounded by her gifts AFTER the party

Since that time I have received several messages saying that because of my post they learned a lot about Apert Syndrome or that they were blessed with our story. 

Because of that, I now have this dream of putting up a local support group for families dealing with Apert Syndrome as well as other Craniofacial syndromes.  My wish is to be able to establish a support group for Filipino families and to later on create awareness about Craniofacial syndromes so that people would learn to understand them more and not to discriminate them.  I know that in time, this will all become a reality.

Party Credits:
Party Coordinator, Balloons & Tarp – Jacque Tan of Partyboosters
Gown – Veluz
Catering – Josiah’s Catering
Photo-Video – Imagination & Abbie Co
Cake – Judy Uson of Cake Artist
Invitation – Printsonalities
Photobooth – Baicapture
Guestbook – Erwin Leyros
Desserts – C is for Cupcakes, Cheri Sambo-Pena, Fernando’s Bakery, Agnes BaƱez, Liza Esteban & Marj Duran
Food carts – Yan-ple, 5th Avenue Pizza, Scrambles by Chrissie Salvador, Kopiroti
Entertainment – Ruther Uruqia and Rommel Mejia
Sound System – Janice of Mommy Mundo
Lootbags, Souvenirs and Prizes – Sheila Contento of Let’s personalize it, Leslie Garcia, Veronica Pantig, Pia Pabelico-Rebenque, Joefe Cayabyab, Inday & Norman Legato, Jennifer Lo-Gana - kiddie stools, Just for Fun, Robby Rabbit
Other food carts and sponsors – Camille Mortiz
And most of all, the generous n@wies spearheaded by Benz
(did I forget anyone else?  I sincerely hope not.)

a bound compilation of all the emails that went around just to make the party happen
We love you guys!  You have blessed our lives and the life of our precious daughter immensely.  We are humbled by your generosity and we hope that we can be as big a blessing to others as you have been to us.

Monday, September 26, 2011

Precious Moments

I'm usually in a rush to put the kids to sleep at night so that I can squeeze in some work or some "me" time.  Tonight however, Janina was in no mood to sleep even if the lights and TV had been turned out and her kuya was already in dreamland.  I realized that I had not been able to bond with my little girl as much as I wanted and should so instead of bugging her to sleep, I did what used to be the unthinkable for me -- I played with her.  I try to avoid playing with the kids at bedtime because sometimes, they tend to forget they're sleepy and then become overly cranky (because of sleepiness).

We played peek-a-boo, she asked to be tickled (and she tried to tickle me back). Just simple forms of play and cuddling up that I had missed the past few days.  I love hearing Nina laugh and my heart just melts everytime I see her smiling face.

The next thing I knew, we were both asleep and when I woke up, she was latched on to me, sleeping contently.  I checked the watch and was surprised that on 15minutes had passed!  I was glad I decided to play with her instead.  I guess it was one of those nights when the Lord gave me a reminder about the more important things in life and that I needed to stop and smell the roses.  :-)

Monday, September 19, 2011

Hurtful Words of a Five-Year Old

We spent our day yesterday at the breathtaking Pico De Loro Cove which was South of Manila with hub’s family.  Hamilo Coast in Nasugbu Batangas was a perfect getaway for the family and the kids. The weather was simply perfect and it was the first time that Janina did not have to worry about staying cold-free for any pending surgery so she finally got to swim as much as she wanted to.  This was her first time to actually swim (outside the kiddie pool we have at home) so it was a big day for her.

She was hesitant at first to get into the pool (yes, it’s a beach cove but they have swimming pools at the side as well) because the water was a bit chilly.  Eventually, she got used to the temperature and began splashing and shouting all around.  She didn’t mind getting water all over her face; in fact, I was the one who kept wiping my face because water kept getting into my eyes.

As Nina and I were playing in the water, it happened.  Something that I had dreaded about ever since Janina came into our lives.  A little boy, about 5 years old came up to us and said to me: “Bakit ang pangit nung baby?” (Why is that baby ugly?).  I was stunned and had to ask him to say it again to make sure I heard it correctly. 

After he repeated his question (apparently, he found nothing wrong with it), I had to fight the urge to put the kid’s head underwater or to even show him what ugly really was.  But since he was just a child, I had to be nice.  I told him in my kindest voice (and trying not to be condescending) that Janina merely looked different in the same way that he looked different as well.  The parents were no were near us so I was sure they didn’t hear him say that.  My response seemed satisfy him because he didn’t ask any more questions.  Besides, I simply turned Janina away and began playing with her just as we did before the nasty comment was given.  At the back of my head, I wanted to tell him he looked like a pig ready to be grilled at the Club’s restaurant and that I kinda spotted the head chef coming out of the kitchen looking for him and that he better run and hide.  Thank God I was deep in cold water because my face was growing hot.  Even minutes after, my mind was spinning with all the other possible answers I wanted to give just to get back at those hurtful words– the best of which was:  “Honey, she isn’t ugly, you are the ugly one!”  Ooh, the joy of seeing this mean boy’s face change with that winning remark!

I looked at my daughter and was extremely grateful that because of her developmental delays, she had most likely not understood what the little boy said.  I stared at her face, which to others may seem odd, and realized that this would not be the first time that we would encounter this.  I’m sure there would be other children or even adults who would be unable to see beyond the physical appearance and simply blurt out unfeeling comments.  I felt sad for the little boy and worried for my little girl.  To us, she is the prettiest girl ever and I don’t want other people to shatter her world with cruel statements like that.  I have to admit that Janina does look very different from children her age, her head appears bigger and her eyes are not deep-set like most kids.  But she has a smile can take your breath away, her laughter will make you smile and those eyes, though bulging, shine with so much happiness and zest for life.  Unfortunately for the little boy, he didn’t see any of these.

I know I could have handled the situation much better.  Every time the little boy would come near us, I’d try to shield Janina away from him, hoping he wouldn’t see her hands as well because if he made another comment, I might not be able to contain myself from giving out a nasty remark.  Maybe next time, I’ll have the presence of mind to respond in a way that would teach them about children with special needs and how they are not so different from everyone else.  Hopefully so.  But then again, I also wish there would not have to be a next time.