She Isn't Scary, She's Just a Little Girl

This entry is a take - off from this article from Huffington Post that I could absolutely relate to.  I'd recommend that you take the time to read it as well.  

Sometimes I can really be mean, especially when it has to do with defending the people that I care about.  During this particular incident, I was feeling evil.  Actually, I can blame the heat and fatigue on this one - after all, walking around campus under the mid-day sun, chasing after 2 children who want to go in different directions isn't exactly a calming experience - particularly if you've had little sleep the night before.  But if I had to be honest to myself, I know that these are but lame excuses for a situation that could have been handled better.  Lest I digress even further, let's go back to my original story....

Last week was the school fair of Kuya and as a tradition in their school, each class organizes a get-together for all the family members of each section.  That Saturday was our scheduled get-together (or salu-salo) so we brought Nina along so that she could also enjoy the different rides and game booths and meet her big brother's classmates as well.

Sometime that morning, Kuya and Dad were in line for the Octopus but Nina and I had to sit that one out (she wasn't allowed, and I am petrified of heights).  I decided to bring her around to check the tiangge stalls in the cafeteria but as we were going around, I noticed 3 boys (probably in Grade 3 or 4) in front of us who were looking and whispering to each other while pointedly looking at Nina.  

I was half afraid that they would say something mean but perhaps seeing that she was with an adult, they kept whatever it was they were saying to themselves.  Still, I couldn't help myself.  My evil twin reared its head and took over from where sensibility and tact decided to take a hike.  I could actually feel the hair at the back of my neck raising out of annoyance at these kids so in a voice loud enough for them to hear, I said:  "Look Nina, those boys are looking at you.  Say "hi" to them!"  

I meant to catch them off guard, and I probably did.  They moved away but continued whispering and looking back.  So I decided to trail them and then called the attention of the boy closest to me by lightly touching his shoulder (kalabit is a more accurate term except that there seems to be no appropriate english translation for it) and then called out: "You keep looking at her, do you want to say hi?"  Nina, say hi to them!"  

As expected, they ran off without a word.  1 point for mom!  I had a smug look on my face and my daughter... well let's just say that she was probably wondering what that was all about.  Thank God she was oblivious to what was going on.

In hindsight, I know I could probably have taken a more mature stance of dealing with it.  (Although I hope to God that He wouldn't think that I need more practice and send another similar incident my way anytime soon.)  Maybe when I get better hold of my temper or perhaps when I can see that my daughter would be capable enough of defending herself, I will be able to come up with a witty remark that would give us the reaction that we hope for. But for now, I am grateful that at this point, my daughter remains unaffected by the stares and whispers of other children.  Although I know deep in my heart that it won't be like this forever, I pray that in time, we will be able to mold her to be strong and confident enough in herself to rise above those challenges. .

Sometimes, we are caught off guard by the comments our children make, especially towards individuals with special needs.  As a parent, I know that I should always be on my toes, always be prepared to guide my kids in being polite and in not being judgmental.  

I echo what Alice Ann Meyer said in her article:

"If you are the parent whose child says another child looks funny or scary, don't simply say, "That isn't a nice thing to say." While you are right, it's not nice, simply saying that and walking away still isolates my child. The next time follow that statement up and tell your child, "I'm sure he's a very nice boy, let's go meet him." Please, come introduce yourself and ask my child's name. I assure you, we don't bite! My child is just like yours; he can be sweet, loving, throw temper tantrums, and be a handful. And I assure you, I am just like you; I am a parent learning my way through this.

If your child is curious and doesn't say anything mean but still notices he looks different, please, introduce yourself to us, ask us our names! Include my child in your world. I promise you, he's not scary, he's just a little boy."

In our case, she's just a little girl - pretty much like any 5 year old little girl that you may know of.  When you see us, say "hello" and do get to know Nina better.  You'd be surprised at how she can quickly capture your heart.

Sticky Situations

I knew I should have pushed for her surgery.  :-(  But I didn't want to risk scheduling a procedure with a runny nose.  It's during times like these when I feel like I failed at doing what's best for the kids and in this particular case, pushing for Nina's syndactyly release last summer.

right hand

At the dinner table tonight, Nina asked me why her fingers were "sticky."  What she meant was why her fingers were stuck together and not separated like ours.  Because I had mentally prepared myself for discussions like these, I thought I would be ready when the time came.  I was wrong.  

left hand

Following my "script", I gently explained that it was the way God had created her and that each of us were different in our own ways.   Although I was pleased with my answer, I completely forgot to consider the fact that my daughter is, was and perhaps, will never be satisfied with a single question.

She then asked if her fingers would become like ours once she grows up.  (At times like these, you know at the back of your mind that you are treading dangerous waters -- but I had to answer her so I carefully chose my words.)  I told her that when she no longer had colds, her doctor would work on releasing fingers.  Her big brother, being the curious child that he is, then asked how they would do it.  I didn't want to say that the doctor would use a knife (because they might decide to do the deed themselves) so I told them he would use a scalpel emphasizing that it was a tool that only doctors could use.

Nathan suddenly had that worried look in his face and asked if his sister would die to which I assured him that she wouldn't and that she had already undergone surgery before on her head.  I told him that a doctor also used a scalpel when they opened her head to fix her bones and that even after they did that, there was his baby sister beside us happy and healthy.

Nina remained quiet for a time and the next thing I knew she began tearing up.  I asked her what was bothering her and in between sobs, she said that she was scared of the doctor's scalpel.  Needless to say, I was devastated.  As I hugged her and reassured her that everything would be okay and that we would all be there for her, I knew then that we should have gone through with her surgery sooner and that we should expect a very distraught child when we do schedule it.

I know that it's too late to do anything now except to prep her so that when the time comes, she will be ready.  But geez, I have no idea how to do it :-(  Wish us luck please?  And while you're at it, do say a prayer that we get this thing (the syndactyly release -- and the tube for the ears)  finally over and done with.


P.S. - I knew something happened in school which prompted her to ask about her hands and so I asked her about it.  And true enough, one of her classmates asked why her hands were "sticky".  Note to self - talk to Teacher Joanna about this so that she can perhaps incorporate something into their lessons about the differences in each person

Of 6 year olds, Crushes and Marrying

I usually blog about Nina so this time, I'm giving a little cybertime to Kuya for a change.

Hubs and kuya returned from the annual field trip today and hubs had a lot to tell.  Normally, i am the one who usually goes with the kids since my schedules are more flexible.  But since my sister and I were scheduled to watch Wicked on stage and i wasnt sure if i could make it back in time, hubs ended up going with them instead (aside from the fact that Kuya said he wanted Dad to be the one to go with him).

Before i start with my story, let me give a little backgrounder first... Kuya's preschool actually belongs to an exclusive girl's school campus.  But because the neighboring all-boys school beside them did not offer pre-school courses, the administrators took the opportunity and made their pre-school co-ed.  So it goes without saying that most sections in the pre-school have more girls than boys.  And that is where i will begin my story.

Hubs told me that while the kids were wandering around the flower farm, a mother of one if Kuya's classmates approached him.  She casually mentioned that our son was known to kiss a lot of his female classmates.  Somewhat embarrassed with that revelation, hubs explained that we have been conditioning Kuya that the only females that he should be kissing are mommy and Nina.  Hubs further explained that Kuya has always been very affectionate to his little sister and his female cousins.  Apparently, the mom wasn't at all bothered by it and even said that her daughter "liked" it and that she had a crush on our son.  It appears that our little boy has his own following among the girls in the class, her daughter being one of them. The daughter apparently went on and declared to her mom that she liked Kuya because he was "so smart and that she wanted to marry him."  Thank God I wasn't there because i would not know how to react to something like that.  In  act even up to now, i still don't know how to respond to that.  It appeared to hubs that what the mom had to say was true because aside from the fact that the little girl kept following (and sometimes waiting) for them, while at the bus, kuya had a captive audience of 3 girls intently listening to his stories and laughing at his antics.  Uh oh....

My baby is a 5 year-old hearththrob.  A girl has declared her intentions of marrying him.  I am going over my head on this.  I am perfectly aware that this is nothing serious and that there is no reason for me to over-react.  Hey, they're just 5 aren't they?  Sure, but that that isn't my point.  When i was 5 the only things on my mind were playing and trying to get out of having to do schoolwork or chores.  The gender of the other kids that i played with were inconsequential/ignored and crushes, more so marriage, were all alien concepts to me.  What is happening to our children?  Why are their thoughts polluted with ideas of crushes and marriages?  Aren't they supposed to be innocent still at this age?  I know for a fact that during my time, crushes only became 'normal' when we were in the late elementary levels and in high school.  What happened between then and now?  

Media.  Yes, i blame the for robbing the innocence out of children - television commercials that focus on boys giving them more attention if the wear this, use that or even eat this particular brand, print ads that objectify women rather than focus on the product at hand... All these make it appear to our kids that its okay for them to act like adults, to behave the way adults do.  And in the course of that, they grow up much too fast and leave behind the childlike innocence that can only be found among them.  When you move the clock forward, you can never bring back the minutes and even the seconds that you lost in between.  There is no turning back.  

I know my son will eventually be the object of crushes by other girls, eventually he will probably find a girl whom he will shower with the same affection that he does for me and Nina.  But not now.  And perhaps maybe not in the next 5 years.  I want him to enjoy being a kid, being a child.  I want him to remain pure, unabashed, and untainted by commercialism and materialism for as long as it is possible.  Perhaps by that time, i will be prepared the next time a parent comes up to me and lets me know that her daughter is crushing over my son and has declared that she wants to marry him.

Looking forward to brighter tomorrows

Needless to say, my blog has been neglected in favor of some other pressing interests (facebook and candy crush to be exact). My apologies. I'm sticking my head in for a bit just to let you know that we are all doing fine and that Nina has been exceptionally talkative over the summer break - which is a wonderful improvement as far as we are concerned.

Hopefully, we will be able to push thru with the second syndactyly release before school starts in June. From the looks of it, that surgery will be done together with the ear surgery to put in t-tubes i her ear to help drain the liquids. If everything works well, that will also mean a great improvement to her hearing and consequently to her speech.

We're now doing home programs for OT and PT and I will soon train for the implementation of her home Speech Therapy program. Her therapist and developmental pediatrician have broached the idea of my entering this field on a professional basis and to perhaps help them implement the programs for other children with special needs. I've been piqued with the idea but i know i will need to think and pray about this before making any drastic changes. I love that it has given me a new sense of purpose, something to look forward to but let's not think about that yet. Perhaps after I've started with Nina's program, then it will be be easier for me to make a sound decision on what goes next.

For most Filipinos, summer is on its last leg so I hope you can all make the most of it before the rains start coming in regularly.

Hugs and kisses,
~ Nina & Mom

Dealing with the Comments

It happened again!  Same place, same pool – in fact, I was actually wondering if it were the same kid.

If you’ve been following this blog, you would remember that I wrote about an incident that happened to us last year while we were at this same beach resort.  This weekend, while spending some time with family, it was as if we had a replay of events.  

Hamilo Coast in Nasugbu Batangas

There was this very lively chatterbox of a boy who decided that I was to be his playmate at the pool.  Actually, I was more of a passive sounding board to him, which was not new to me since Kuya does this to me almost all the time.  Apart from showing me his treasure (15 pieces of shells taken from the beach area), the little boy asked me what my order was for his make believe fast food resto. As with my kids, I decided to play along and ordered French fries.  Would you believe he charged me $450 for it – yes, in dollars!  (Perhaps he forgot he was in the Philippines).  Of course I told him it was too expensive and that was when he noticed my little girl. 

He asked me “why like that” pointing to Nina.  I asked him what he meant about the “why like that” comment and he repeated it and then as if to explain further, put his hands on the sides of his face and pulled them down, adding that her eyes were like that of a puppy's. 

at the indoor playground

Look, I know my daughter is cute, I will not object to that, but she is definitely not canine looking! 

Again, being at a loss for words, I simply told him that of course she did not look like a dog and that we all look different from one another.  Perhaps he felt that a long lecture was next or maybe his attention span could not take anything more than that and the little chatterbox moved away in search of some of the pebbles and shells that he threw into the pool, much to my relief.

Some time after that, while I was out of the pool and Nina was with her Yaya, I heard some kids ask her as well why Nina looked different and because I told Yaya to be tactful in dealing with those comments, she turned Nina away and commented that in fact she was a beautiful baby while giving her a kiss (great job, Yaya!)

I know we could have done way much better but incidents like this always catch me when I’m off guard.  In as much as I know I need to explain to them (the young ones most especially) that all children are made differently and that Nina was born with Aperts and went through an operation, but sometimes too much information might distract them from the lesson that I want them to learn.  Perhaps I arm myself with witty counter-statements that would at least create a impact on these kids so that the next time they meet someone who looks different, they would know what to say.  So how would you do it?  Do you have any witty lines in mind?

With Kuya and her cousin Migs

Oh yeah, a few minutes after I ranted about the incident on Facebook, I saw this post on a friend's wall.  Everything happens for a reason so I know that I was meant to read this post:  

Wherever we go, there will always be people who will judge us (physically, mentally.. everything). It will HURT... but this shouldn't bring us down because God made us this way. All we have to do is to pray for those kind of people, surrender them to God (no evil thoughts.. for it will not bring glory to God..It will not please Him) and be thankful to God for designing us the way we are now. 

~"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know them well." - Psalm 139:14

It's a difficult learning process - for me especially.  But I know I'll get there.  But it is without any doubt in my mind that my daughter is a wonderful work of God and that in His eyes (and in mine) she is perfect.  No matter what other people may say.

Hey, I still need those witty comeback lines so that I don't punch someone's face the next time this happens, so help me God!  Leave a message if you have any :)

How Do They Do It?

I just realized that it's been a while since I last made a post here.  The truth is that I've made several drafts on my laptop and several more in my head.  But then things just start coming in and everything seems to need more attention and then before I know it, either the topic is outdated or I've complete forgotten about it.  Which makes me wonder... how do mommy bloggers do it?  How do they manage to write up a lengthy and interesting article while managing their household?  I often convince myself that I can write something while the kids are asleep.  But even during those times, the more "important" stuff still gets in the way.

Take for example the fact that last month (August) was Breastfeeding Month.  While it was during the time when I was weaning Nina from breastfeeding, we still managed to join a group that had Breastfeeding pictorials taken - just to have a momento of such a special time in our lives.  I had started making my post on that, but as you may have guessed, something else came up and the post got shelved.

So, to all the mommy bloggers reading this post, I tip my hat off to you for doing something that for me seems impossible!  But I hope that time will come when I can figure out your secret so that this blog will be alive more often.

Until that time comes, here are some photos taken from that event, just to let you know that we're doing wonderful (although quite busy).  Hopefully, I'll be able to come up with an interesting update soon.

For now, enjoy the photos and remember, September is Craniofacial Awareness Month!  

Weaned!!!

I've been exclusively breastfeeding Nina since she was born and it has been a source of pride and joy for me to be able to do that.  When she turned 2, her pediatrician felt that she was underweight and needed to gain more pounds especially with her forthcoming surgeries so we were forced to supplement with formula milk.  But, it was always a given that come night time - it would be her time to directly feed from mommy.

Lately, I've been having some health issues that required my intake of a certain medicine which was not advisable for breastfeeding moms.  Of course, I initially chose not to take the meds so I could continue to provide milk for Nina.  But, their dentist had recently advised us that we needed to make sure that her night time feedings are lessened and that the last thing she does before going to sleep was to brush her teeth.  If I continued to breastfeed this would not be possible because aside from the fact that she's latched on to me until she falls asleep, most of the time she's latched throughout the evening!  It's come to a point where in these past few evenings it has become harder for me to pry her away.  I often have sneak out of bed to sleep on the floor so that she wouldn't latch on and also so that I can get some sleep.  But then after just a few minutes, she wakes up and cries for me and I have to go back to our bed.

So, I finally decided it was about time to wean her.  We tried to condition her about it the first few evenings but it didn't work.  I tried placing Calamansi but the taste didn't seem to bother her at all.  Eventually, we were able to find a solution that worked.  I started last night but wasn't quite as successful.  But tonight, it worked perfectly.  To top it off, Nina now sleeps while hugging me!  And that's one position that I can't and will not even complain about.

Yes, I think she has been weaned.  Aside from finally being able to take my prescribed medication, perhaps now, I can sleep better :)  Come to think of it, with a baby as sweet as her hugging me, how could I not?

Precious

Okay, so she kept me up most of the time last night because she was practically latched the whole evening.  During the times when I would be able to pry her away, she’d wake up and would start crying for me.  So much for a good night’s sleep.

This morning, while hubs and I were praying before our breakfast, Nina saw us and immediately went to the corner and knelt down to do this...

Now how can you not fall in love with this little angel and how can you stay mad at her?!

Hmmm... I so love being a mom! (even if it means sleepless nights)

Dear Kuya

So you thought that Mommy’s blog would be all about Nina… well  think again!  I can’t let your let your 4th birthday go by without documenting it my usual mushy way so indulge me a little okay?

It’s  hard to believe how fast time flies and how quickly you are growing.  You used to be my baby but now you start to complain whenever I call you my baby.   Come to think of it, when it comes to Nina, you show us that you really are a big boy now.  We are so proud of how well you look out for your sister.  You’re doing a mighty fine job in being a Kuya.  Whenever I see how you attentive you are and how concerned you are for Nina’s welfare, I always have this great sense of pride blowing up in me.  Many times I’m tempted to point out what you do to other people and tell everyone else that you’re my son.  Thank you, for making us proud, for assuring us that you will always be there for your sister.  Just the other night, I saw you wake up in the middle of the night and place a blanket on your sleeping sister – now  else in the world can I find a 4 year old doing that?! 

We are also happy that you’re slowly learning to be independent by taking a bath without the help of yaya, or by brushing your teeth, drinking milk from a glass, and lately eating by yourself.   I also love the fact that you no longer have “accidents” in the evenings  (Tipid na kami ni Daddy sa pag-bili ng diaper).

This year, you showed Dad and Mom how active you can be but at the same time, you also showed us how obedient you can be at the same time.  I know I scold you a lot of times but it’s only because I want you to be safe especially since at this age, you still tend to cry whenever you get hurt or get into an accident.  You also did very well in school this year!  You made it to the top of your Nursery class and you didn’t give mom a hard time whenever study time came.  Congratulations, babe!  I’m amazed at how quickly you learn things (especially when you put your heart to it) although at times, I have to admit that I do get frustrated especially when you forget your lessons and would rather play than study. 

receiving his award for being top in his Nursery class

This year, you had a lot of favorites:  the Disney Cars characters (particularly Lightning McQueen – that’s you and Mater is Daddy’s character).  You’ve also been addicted to Angry birds (oh how you can play that game so well that you sometimes get more 3-stars than mom!).  You also like Thomas the Train, Kung Fu Panda (and you do a mean kungfu panda dance) but over everything else, you still love your Elephants!  And your favorite color this year is Red (actually it has been since you were small) but you love it now, more than ever to the point that your favorite bird in the Angry Birds game (on the ipod) is the red one.

When school opens this year, you’ll be going to a big school – Miriam.  It’s the same school of Ate Chawie and now, Kuya Migs will be going there as well together with Ate Abby.  It’ll be a big change for you but Dad and I decided to enroll you there so you would learn to be more independent and less clingy to mom.  I just know you’ll like it there.

So on this, your 4^th year… dad and I just wish that you would continue being as loving and as sweet as you are right now.  Stay as obedient as you are but please try to cry less often, okay?  Remember that Daddy, Nina and I love you a lot and that we will always be here for you.  Happy birthday, honey!  We love you very very much.

Challenges and Blessings

2012 appears to be a very challenging year for us but so far, all signs show that no matter what happens, everything will work out somehow.

Janina has been attending speech therapy classes especially since she’s very much delayed on this aspect. The pediatrician also told us that she appears to have verbal apraxia.  According to www.apraxia-kids.org, Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. The root word "praxis" means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.

One of the challenging aspects of her attending speech therapy is actually the cost as a one hour session costs PhP 700.00 or approximately $16.00.  We meet the therapist twice a week so that’s roughly around P5,600.00 or $127.00 a month. On top of that, her big brother will be going to the big school by next school year and because we value quality education, we opted for a school whose tuition fee does not exactly cost peanuts.  So far, we’ve been able to make ends meet and I know that with His grace, we will survive the year. 

Inspite of these challenges, we have so much to be thankful for.  When Janina was born, she was diagnosed with PDA and ASD.  Simply put, the doctors found that her heart had a hole which they hoped would eventually close by itself.  Recently, the pediatrician noticed that Kuya’s chest seemed to be getting bigger, somewhat like that of a pigeon’s and she also noticed he had a heart murmur.  So we brought the two to the cardiologist (especially since it was time for Janina to have a follow up check-up).  The doctor recommended that they both get an ECG as well as a 2D Echo.  Upon hearing those words, my mind starts computing costs once again particularly because we  were advised that these would not be covered by the health insurance because they fall under congenital conditions.  But again, we tell ourselves that the most important thing is still the health of our kids and we go on with the procedures for both. 

When the ECG was done, the pedia said that everything seemed to be okay (breath of relief) but that she wanted to have the 2D Echo done just to be sure.  Today, we had the 2D echo done for both and amazingly, both of them have been issued with a clean bill of heart-health!  Praise God!!!  I’ve been praying and praying over this and I’m so glad that our prayers were answered.  My heart and my mind tell me that our answered prayers are all with the help of Mama Mary.  Maybe it’s because I am now reading the third installment of Mama Mary and Her Children by Fr. James B. Reuter, or maybe because while we were waiting for our turn to have the 2D echo, who talked to me about Mama Mary, the Bible and all the conversions he heard about. 

Yes indeed, it’s another Mama Mary miracle for me and I’m sure that there will be more to come :)

Answered Prayers!

Six months ago, Janina's pediatrician, who also happens to be a Developmental Pediatrician suggested that she undergo a Developmental Assessment to find out which areas we would need to focus on in terms of therapy.  At that time, her scores showed that she was functioning like a 10month old child over-all and not like an 18month old.  Her weak areas were Hearing and Speech - particularly the Expressive side (where she was merely like a 6month old baby); the Eye-Hand Coordination (she hadn't had the syndactyly release yet); and on the Performance  Scales.  Because she scored low on 3 scales, the was considered to have Global Developmental Delay.  The pedia suggested that we go back to the Occupational Therapist so that the home activities created for us would focus more on developing her weaknesses.

The truth was, we were never able to go back to the OT.  First Janina had her hand surgery and the wounds needed to heal first.  Then we got busy, then the therapist got married and went on her honeymoon... and then it was time to go back for another assessment.

Imagine our surprise this morning when she got good scores on all scales except on the Hearing and Speech Scales!  Even her doctor was happy about it.

So although Janina understands our conversations with her, she really has difficulty in forming the sounds that would make her words audible.  She tries, and she tries very hard.  But to us, all her sounds come out the same.

The doctor says that it's possible that she may have Speech Apraxia - which according to Google is a motor speech disorder where children have problems saying sounds, syllables and words.  The muscles themselves are not the problem, its the area of the brain that tells the muscles how to move and what to do to make a particular sound or series of sounds that is either damaged or not fully developed.

When Janina was born and her sutures had not been opened up yet, we distinctly remember being told that from the MRI and CT Scans, it appeared that the portion of her brain that was compressed by the lack of space was the portion of the brain that affected speech.  That explains everything.

Of course, therapy will be next on our agenda and our Pedia referred us to someone whom she feels will be able to help Janina "learn" how to make the correct sounds.

For the meantime, we are still jubilant at her miraculous developmental growth.  I'm sure that will all the prayers coming her way, the Lord and Mama Mary listened and made sure that she would be a living testament to the healing powers of prayer.

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.  :-)

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.

Paranoia or Just Thinking Ahead?

We were at church this morning and I noticed two kids in front of us who were looking at Janina and whispering to one another.  Immediately, my mind raced ahead to what I would tell them if they said anything mean or to how I would try to teach them about being kind instead of being cruel.  I guess that's the paranoia and the stage mother in me reacting.

I realized later on that they were not saying anything cruel about her (well, at least nothing that I could hear) so I had no reason to worry.  Thank God.

I know I still am a bit far off from that time when Janina will have to mingle with classmates and schoolmates.  I dread that time when my daughter will have to experience funny stares and harsh remarks and teasing from other children.  As a mother, I can only do so much to protect her from bullies.  No matter how hard I try, there will be some things that she will have to deal with by herself.  I guess the best that I can do is to give her enough self confidence and love so that even in the face of these, she can simply shrug her shoulders and let the comments pass from one ear to another.

How do I do that?  I have no idea yet.  Any suggestions?

Excuse Me, She Isn't a Rabbit's Foot

For some strange reason, Filipinos, particularly the traditional ones, have this belief about children with special needs supposedly bringing luck to the families that care for them.  I was never bothered about this idea until Janina came into our lives.

A few months after she was born, hubs and I attended our usual family gathering.  A particular relative (I'm not saying who...) repeatedly kept telling me that Janina would surely bring us luck.  It actually came to a point where she casually "asked" for my baby.  Knowing that she only meant well, (plus the fact that I had been taught to be respectful to the elders) I took no offense at any of her comments.  But on hindsight, thinking about it made me feel bad that society would consider a person as a "lucky charm" above everything else rather than as a human being.

It is without a doubt that my daughter has become a blessing to us, not because we became instant lottery winners (although that would not be so bad, come to think of it), but because she has taught us to become appreciative of things that we would have normally taken for granted.  We are blessed because out of the billions of people, we have been chosen to care for this precious little angel.  It isn't going to be an easy task - we are well aware of that.  But when you think about it, there is a sense of pride in the idea that you were deemed worthy to take on such a big responsibility of being her parents, of making sure that she gets the best care, of being given the chance to become normal - like everyone else.  Having Janina has taught me to be more understanding and sympathetic to the plight of other people, most particularly mothers of children with special needs. She has brought our families closer than ever. And most of all, she gave me, a renewed sense of purpose.  Because of her, there is a drive like no other, to find a way to make other people aware of what Apert Syndrome is so that they will come to understand those who are diagnosed to have it, and hopefully treat them no differently from you and me.

So please, my daughter isn't some lucky charm like a rabbit's foot or a shark's tooth.  She is a blessing -- not because of what she has given to us but for what we hope to be able to give her.