Not to be Underestimated

Those who are familiar with Apert Syndrome know that the fingers are the single most defining characteristic of the syndrome.  During normal development, the fingers start out as fused together although eventually, a signal is sent to the hands and feet so that the fingers and toes separate.  Unfortunately, this process does occur for a person with the syndrome and hence the fusion.  

Surgery is most often recommended as early as possible so that as the child grows, his or her ability to hit the developmental milestones are not hindered.  Unfortunately, even with the syndactyly release, their fingers remain stiff because of a missing middle joint (called the PIP or proximal interphalengeal joint).  In the case of Nina, while she now has 5 fingers on one hand (the other hand surgery will be scheduled soon so on the left hand she only has 3 digits), she is still unable to make a fist or bend her fingers like other children.

The lack of hand dexterity makes it difficult for her to perform simple tasks.  Holding a pen, writing, cutting with scissors, buttoning a shirt and even picking up small objects from the floor are always a challenge.  This is one of the things that Nina's teachers in school take into consideration whenever they present materials to her.  But sometimes, our little girl seems to have more faith in her abilities than the people around her.  

One example in particular is the sewing activity.  Although sewing is a standard material for her age group, Nina's teacher opted not to present it to her because of her condition.  Her teachers were worried that the might end up frustrated with the activity, but she kept bugging them about it.  Eventually, the teacher relented.  To her surprise, not only did Nina complete the activity at the first try, she did it excellently!  And because she wanted to bring it home to show to us, she did it twice so that she could leave one for her portfolio.  

Above is the progression of her sewing work in school over the past 3 months.  

When she brought home the project, I had to ask her several times if she was the one who did it or if had gotten help.  And even though she said she did it all by herself, I wasn't convinced and even had to confirm it with her teacher. (I know, bad mom!)

Not only was it a big achievement for Nina, it was also an eye-opener for her teacher not to undermine the capabilities of her students and for me not to limit the capabilities of my daughter.  I read this quote from Facebook page for mom's with special kids needs, it said: "Let us not let textbooks limit what our child can or cannot do."  And in the same way, we should not let one person's disabilities define what he or she can or cannot do.  

Strength does not come from what you can do.  

It comes from overcoming the things you (or other people) 

once thought you could not.

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.

Because I'm Special

Following my post on Nina's comment about her "sticky hands", we spoke with her teacher and they agreed to talk about each child's uniqueness in class.  For me, the advantage of a non-traditional school set-up is that matters like these can easily be addressed and incorporated into their lessons.

After that incident, she only asked me once: "Mommy, why are my hands sticky?" But she also followed it up with "Because I was born special?"

Sticky hands or not, we all agree that our children are special - with or without the presence of any disability.  But for parents who have to deal with more challenges than usual, it is but natural that they believe, with all their heart that their kiddos are doubly special than the rest.

Psalm 139:13-16For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.

Aint No Button Getting Me Down

In an older post, I talked about Nina's fascination with buttons and how she would work on our shirts until she was satisfied that they were all properly fastened.

Just the other night, as we were preparing for bed, she chanced upon one of my button down shirts which was hanging by the cabinet door.  Instead of getting ready to sleep, she began threading the tiny buttons of my shirt into each hole.  I knew for a fact that once she started with something, she wouldn't stop until it was completed so I quickly got my phone and started recording her progress.

It probably took her a little under a minute to complete the top button and her kuya and I were becoming a wee bit impatient (Don't you think that we adults have that need to have everything done as quickly as possible?  I know I do).  But in the spirit of trying to be a good parent, I decided to wait it out (and leave kuya with no choice but to do so as well).

While I watched her, I realized that had it been me, I would probably have stopped even before finishing the first one.   She struggled with each one but she kept going and going without showing any sign of giving up.  It was then that I began to reflect in awe at the fact that my little girl, who has been diagnosed with a "disability" was able to patiently though a difficult task without a single complaint, without taking a break, and more importantly, without even asking for help whereas I would normally grovel or perhaps even give up the moment things get a little too challenging or inconvenient.  Now isn't that mortifying?

It really is humbling to come to the realization that my daughter, through her actions, is teaching me perseverance in the face of adversity.  Normally, it should be the other way around and yet, here she is, doing soo much better than me.  I know I have so much to learn at this point, luckily I have a wonderful teacher ;-)

Maybe I should start keeping a spare button with me just to remind me to never let little things get in the way when it comes to hitting my goals.


"Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength."  Arnold Schwarzenegger

Counting My Blessings

Today is my 43rd birthday.  And despite some mishaps that would normally ruin my day, i woke up this morning with an extremely grateful attitude towards everything.  So what if the desktop computer AND my laptop decided to malfunction on the same day.  So what if my son's pet fish chose this day to pass on - these were minor bumps compared to everything that i realized i had.

Every year, when we hear mass on my birthday, we are always lucky to attend the mass being officiated by Bishop Raul Martirez.  Hubs and I both love this priest because of his charisma and his love for Mama Mary.  He would often say mass at CTK and we always found his homilies interesting and practical.  Then he was invited to our Community mass at Serviam  and he won my heart and my respect all over again.  And because my birthday also happens to be the feast of his ordination as a priest (this year is his 53rd? year) he usually celebrates one of the morning masses to give thanks as well.  

I had actually wanted an all-in-one printer for a birthday gift but i also knew that it was out of the question since it was way beyond our budget.  I was happy hubs gave me a colorful bouquet of flowers, but when the kids gave me their card and the shirt that hubs picked out for me, i was genuinely appreciative of it.  It was at that moment when I realized that I actually had everything I could ever have hoped for in these three people - Jojo and the 2 kids.  No material possession could ever top that.

This morning after the mass, my kids went up to Bishop Raul for the customary "mano". But aside from that, hubs coached Nathan into asking the bishop to give me a special blessing since it was my birthday too.  That in itself made my day already.

Aside from that, there was a friendly lolo at church who came up to us during the part where you say peace to everyone and he shook hubs' hand.  Then out of his shirt pocket, he pulled out 2 lollipops and gave them to the kids.  I found that really endearing and silently told myself that i wanted to be like that when i become a senior citizen (that sweet to the kids, but as well dressed and elegant looking as the other lady sitting in a separate pew - i bet you, you would want to look like that as well when you get to that age range.)

When i got to the office, my office cubicle was decorated with colorful balls and swirls hanging from the ceiling and a colorful banner up on the side, all courtesy of my Mother in Law and our officemates.  Now who wouldn't be touched by that?

Then came the avalanche of gifts, greetings (an overwhelming number, thanks to Facebook) from friends many of whom I have not been able to speak to or seen in so many years.  I have yet to get to all of them as of this writing as i know, there are still some greetings that I have not yet been able to acknowledge.  And before my day ended, I was greeted with the news that one of my former staff had given birth and the other had passed the bar exams - my "kids" as I fondly call them, continue to make me proud even though we no longer work together.  

43 years is a long time and while I am guilty of knowing that i have much more to give, i have received so much over the past years - much more than i ever deserve.  And this year, i believe i have received the most important gift of all - the grace to realize and accept that yes, I have been blessed, that I have no reason to complain and that I have every reason to give back.

Thank you once again to all my family and friends for remembering me on this day.  Thank you to my family for making me feel very special and well loved.  And thank you Lord, for loving me, for creating me, for blessing me, and for making me realize all these.

I know that this will be a good year and that great things are in store for me this year.  I just know it. Happy birthday, me!  Make the most of everything okay and no slacking up this time, okay? ;-)