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.

Another Year

Dear Nina,


I can't believe how quickly time has passed.  I feel that the past five years just sped by without giving me a chance to cherish every moment.  You've been telling us that you aren't a baby anymore and though I agree, a big part of me cannot seem to let go of that thought.  Yesterday, you declared to Tita Pu that you were 5 turning 10years old.  You know what?  Sometimes, we think so too!

We're happy that you love your new school and even your teachers proudly inform us that you seem to have coped up very well with the Montessori Method of learning.  You know, there have been several instances where you've managed to stump Kuya with the facts that you learn from school (although I'm sure he wont admit that so let's keep that as a secret, okay?).  Dad and I pray that as you grow older, your enthusiasm for learning and for experiencing new things will remain.  We love seeing your face light up with joy whenever you experience something new or when you proudly show us something that you've accomplished.  Know that Dad and I will continue to do our best to provide you and your Kuya with more opportunities for learning (coupled with a lot fun, of course) for as long as our bodies can hold up.

I must say that this year was a good year for you health-wise.  Although we continue to deal with issues on colds, cough, asthma and allergies, I'm happy that you've managed to stay away from any hospital confinements and frequent trips to the Emergency Room - we had 1 or 2, right?  Let's hope that this year we can trim down those visits to a zero, shall we?

This will be a very very good year for you, I am almost sure of it.  Of course, we should expect that there will be challenges but we are pretty sure that you will be able to handle these well.  You have Dad, Kuya and Mom (plus all our other relatives) to back you up so what else have you got to fear, right?

Keep viewing life the way you do, sweetheart.  Because as you do, you continue to teach us and to inspire us that nothing can and should ever keep us from reaching our dreams.

We love you!

Mom

My Favorite Toys

In this day and age where practically everything runs on some sort of electricity, I've taken a special liking to toys that run, not on batteries, but on the children's imagination.

They say that the best toys are those that do not do anything on their own, and I agree.  And I kinda think that my kids approve as well.  Their building blocks, wooden blocks, puzzles and smart cubes are their constant favorites and they never seem to run out of ideas playing with them.  Never mind if they've had these since they were a year old - they never seem to go out of style.  Battery operated toys often loose their calling after a while and more often than not, we end up with corroded batteries.

Stuffed toys?  Please, give us a break!!!  I have half the mind to donate their stuffed animals because of all the dust that they accumulate (hello allergies!) except that I'm forced to keep them for now for sentimental reasons.  We have tons of elephants right now that even I can't seem to part with.  So for now, I will have to make do with keeping them in a large plastic bin until I finally figure out what to do with them.

Meanwhile, I'm dreaming of adding more to their collections.  I wouldn't mind adding their sets of building blocks, Legos and puzzle sets (the more the merrier!) because every time they start playing with it, they keep coming up with more and more imaginative ways to build and create.

smart cubes, construction toys, legos, puzzles and any kind of wooden blocks
never go out of style as far as these 2 are concerned

magnetic alphabets come in handy not only to teach spelling and reading but also for sorting excercises

shape sorters can teach you shapes, colors, patters while developing motor skills.
OC Alert! Notice how someone has to make sure that the shapes are all aligned

wooden/plastic puzzles - it doesn't matter if they are the cheap ones from Divi, my kids can play with these for hours

from developing creativity to problem solving to motor skills - all in just one toy

Christmas is fast approaching... what about you?  What's your favorite toys?

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.

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

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? ;-)

Bound Together by Misspelled Genes

How can your heartbreak for a child you've never known?  How can you feel the sadness of someone whom you've not ever met?

We are all bridged together by a threads of commonality - a single gene that has allowed us to connect in one way or another.  That misspelled gene that brought about our children's condition, is the same thread that binds us all together.

I received a Facebook friend request today from someone I did not know.  As soon as i checked her profile, a familiar face greeted me - the face of a child with Apert Syndrome.  Perhaps because of my familiarity with Nina's case and the friends i have made both here and in other places has taught me to zero out on the Apert kid merely by their facial features.  Sometimes I check the hands just to make sure, but more often than not, there is no need to do so.

I saw that that she and I had common friends from the Cranio communities and i was pleased to see that she was based in the Philippines.  I approved the friend request and added her up to the Apert Manila page that I had created as well.  A few minutes after, she sent me a private message.  And so i came to know of this pretty little girl nicknamed Ramram and her strong-willed Mama Raquel even though it was too late.

They chanced upon Nina's video on you tube.  Seeing how well she had thrived after her own surgery, they decided to bring Ram to PGH for her craniotomy.  The procedure had gone well, or so it had appeared.  But in less than 24hours, her vital signs went down and then she was gone, all too soon.  Despite the fact that she was under the care of one of the best cranio teams here in Manila, the path which they had begun to create for her came to an abrupt end.  

My heart bleeds for the parents of Ramram.   My heart bleeds for Mommy Raquel who treated Ram like her own.  I couldn't help but cry at the idea of bringing in a well child to the hospital with hopes of even making her life even better only to end up not being able to bring her home anymore, or hug her, or kiss her evenf or one last time.  I scan through the pictures of her mom's facebook account and all I see is a beautiful and angelic face.  A face no different from Nina's.  I am told that the reason they had the courage to go through with the surgery was because of Nina.  I can't help but think if things would have been much better for her if they hadn't seen the video at all.  While it seems that the Lord had other plans for Ram, the loss of such a young life is disconcerting.  The thought pains me but I know that what I feel now cannot even match half of what her parents felt when they were told of the news.

I have always favored the saying that "everything happens for a reason" but when that 'everything' happens to you, no amount of reasoning will ever be enough.  When grief and sadness envelope your whole being, everything else will come up empty.  

I know very little about this family and yet my heart believes that no matter how short she had spent her life with them, the memories they have of her will always be special.  Her presence albeit short, will change them drastically but hopefully positively, in the same way that knowing of her story has changed me over the last 24 hours.

Everything happens for a reason.  Whatever the reason may be, I pray that Ram's sacrifice of having to give up her wonderful earthly family was not in vain.  I pray that all families who are experiencing or who have experienced their own losses will find the light at the end of the tunnel.  I pray that we all learn to appreciate everything that we have, regardless if these aren't what we had hoped for.  I pray that each parent will, at the end of the day, never forget to hug their children and tell them how much they are loved.  

And to you Ram, i wish I had met you.  i wish Nina had met you because you would have become such good buddies, I'm sure.  Thank you for blessing our lives even though you are no longer around.  Thank you little angel, thank you for giving us so much in the so little time that you had on earth.  Go ahead now, flap your wings - it's time for you to fly high.  Rest in peace sweetie, your task is completed and you have done it well.

Ramram and Mommy Raquel (photo used with permission from the owner)

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.

Conquering Mountains Through Buttonholes

This happened probably around late last year but as usual, things started piling over and writing about it was set aside. Still I knew I had to write about it so I decided to temporarily jot it down on my Ipad waiting for my son at the doctor's clinic until I could fine tune things up a bit for the blog.

Nina has always had a fascination for buttons and buckles often times, she would insist on buttoning and rebuttoning her jacket, her dad's shirt, her own blouse, or her sandals.  While hearing mass one Sunday, Nina took favor on the buttons of my blouse.  Unfortunately, the button was so small and the holes were a tight fit.  After managing to unbotton my shirt, she then began working on putting it back.  I have to say that even for someone with fully functioning digits, the task would be challenging particularly because the holes were relatively small.  But still she persisted.  She repeatedly refused any help from me, her dad or her aunt who were all beginning to notice that it was taking her a looooong time to complete her self appointed task.  Because I had to stay still until she finished her task, I was become somewhat impatient (not to mention uncomfortable) but i couldn't convince her to get any help.

After about 25 minutes of struggling, she finally got the button in.  Was i proud of her?  I was bursting!  While this may not appear to be such a big deal for most parents, being able to button up a shirt when you have 3 stiff digits in each hand is a big big milestone.  It wasn't easy, but her determination made it possible.  

Patience is really something that i know i need to work on developing but seeing my daughter work tirelessly inspires me to do the same.  How many of us give up so quickly when things don't quite go the way we planned.  How many times have I lost heart or complained because I could not lose the excess weight I had been trying to get rid of ever since I gave birth 4 years ago?  Comparing my own concerns with the challenges that prevent my daughter from functioning "normally" I am put to shame.  How can I push my kids to persevere  with conquering their mountains only to give up my goal to become healthy and fit because of mere laziness?  Ouch!

Convicted, I convince myself to try harder and follow the example of my daughter.  Yes, the tables have been turned.  My only hope is that she will stay as determined when it comes to the bigger life challenges which would involve not just buttons or buckles.

Lord, I pray that we be given as much determination as Nina has, that inspite of whatever difficulties we may be faced with, we would go on, doing that which we know we need to do.  Amen.

Starting the Year Right

I remember from the last Developmental Assessment that Nina had, we were asked if she could already pedal a bicycle without assistance.  During that time, she had yet to master the skill.  Undoubtedly, it was easier for her not to, since there would always be someone pushing the bike for her and all she had to do was just sit.  Every now and then, we would teach her to put more pressure on her feet and guide her thru the process.  Her kuya was the most patient one but more often that not, he would just give in and push the bike for her so that "she would not have a hard time."

Yesterday, we were pleasantly surprised to discover that after months and months of coaxing and prodding, our patience had finally paid off.  With just a few encouragement, Nina was able to pedal around the terrace with very little assistance from her Kuya.  

Instances like these make me realize that we really need to be grateful even for the small stuff.  While some parents would not make such a big deal out of their kid learning how to pedal a 3-wheeled bike, to a parent of a child with special needs, this IS a big, big, big deal!  

So the next time you see someone celebrating his or her child's milestones, celebrate with them!  Nothing can ever be so insignificant that it cannot be worth rejoicing over.  And for those who shared with our joy, Thank You!  

Giant Steps

School appears to have had a positive effect on Nina.  Although she sat through the nursery class in the school where I work last year, she was not officially enrolled.  When classes started this June, she became a bonafide student.

Perhaps it was because of the exposure, or maybe it was simply the timing, but all of a sudden, we noticed that she started talking more and that her words were easier to understand.  She developed an appetite that could rival any adult and all of a sudden, we began to notice that her clothes all started getting smaller and shorter.  Growth spurt?  I can't think of a better term for it except that.

I didn't put too much thought into it but when more and more people started to notice, it re-affirmed our observations.  A perfect example was her dentist whom we last saw in July.  When she saw Nina yesterday, she immediately exclaimed that Nina appeared to have suddenly grown from a baby to a child (and not even a toddler, mind you).  True enough, Nina showed how much she had grown up by singing to her dentist about brushing her teeth and by willingly sitting on the dental chair by herself (a first) without any tears or complaints.  

Time indeed flies fast.  I know I still have to catch up on her home programs for OT, PT and speech but at least even with the fact that I lack focus on our homeworks on these, her improvement has become more than significant if I may say so myself.  I just can't wait to see what her Dev Ped will say when she sees her.  :-)

Busy Bees

I just realized that it has been ages since I last updated our blog  😔.  With my work,  the kids being in school, having to make sure that all their assignments are done and keeping them away from the TV and all other electronic gadgets, there is barely enough time for me to put my thoughts down in writing - suitable enough for the blog.  My bad.

Needless to say, everything in the home front is busy and by busy, I mean on a positive side.  Our little miracle girl is growing up mighty fast and she isn't afraid of putting her mark on this world with a bang. I am so glad she is at that stage where she does not let funny looks or snide remarks bother her.  (Come to think lf it, she and her classmates are all at that stage where they never let physical appearances cloud their judgement of a person - now why can't grown ups be like that?)

Hopefully, I will soon be able to manage my time better so that. I can squeeze in some interesting entries here.

Cheers!

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

Hearing our Way through the Lenten Season

                Okay, so I admit I wanted to challenge God a little.  I was hoping that considering we’re smack in the middle of the Lenten season, maybe He might want to rise up to the challenge of making a miracle out of our situation.  But then that’s completely ignoring the fact that my little girl is a miracle herself.

                What am I talking about?  Ears.  Yup, those fleshy things that stick out from the sides of our head.  For normal children, these barely (if at all) pose any concern for us parents.  But for children with midface hypoplasia the ear infections are common.  If left untreated, it could lead to severe hearing loss or at worse – to meningitis.

               Because the doctors had noticed Nina’s ear infection did not seem to subside even with antibiotics, we were advised to get a hearing test just to see how much the infection had affected her hearing.  The original test recommended to us was a Play Audiometry and a Tympanometry.  The tympanometry was a breeze since it didn’t require much from Nina other than to wear the headphones.  The play audiometry on the other hand involved her having to place pegs on the board the moment she hears a sound from the headset.   It started out good since the headset was not an issue to her, but compliance was another thing since she preferred to pay attention to the toy in front of her rather than follow the instructions and listen to the sounds coming from the headset.  Fail!

Taken during the Play Audiometry 

Crying because of the probes

               So we had to make arrangements for another test to be conducted in place of the play audiometry.  This time, we had to make sure that she was asleep during the whole procedure.  That meant keeping her up late and then waking her up early so that she would agree to take a nap in the ENT clinic.  The first time, we let her fall asleep during her usual bedtime schedule of 7pm but then we woke her up 4 hours earlier than usual.  Although she feel asleep in the clinic, she awoke easily especially when she felt the probes attached to her.  Another fail.

All cried out

            During the second try, we kept her up until 10:30pm and woke her up 4 hours ahead of the usual time once again, giving her only 5 hours of sleep compared to her usual 10-11hours in the evening.  That did the job!  Unfortunately, it took longer for the nurse to complete the test so by the time she woke up, only the BAER (Brain Auditory Evoked Response) had been administered.  We decided to take advantage of her lack of sleep and schedule the ASSR (Auditory State Steady Response) as soon as possible.  The earliest available schedule was the next day so we went with that.  Once again, we followed the same pattern of letting Nina sleep late and waking her up early.  So after 3 days of very little sleep, we were finally able to complete the tests.  We also realized during the course of these late nights, that Nina would fare very well working either the night shift or perhaps doing a straight shift at work when she is old enough.

2nd try - fast asleep before they started the test

3rd and final try

Even before the actual report came out, we were already aware that one of the test results would indicate Nina having moderate to severe hearing loss but we were also advised that this should not be taken as it is but that it should be co-related to the other test.   I need to point out that upon interacting with Nina, one would never think that she had any form of hearing loss.  It was only when the Developmental Pediatrician pointed out to us that it may be possible that she was having difficulty in enunciating words clearly because the infections were preventing her from hearing the correct pronunciation of the words.  

By the time we met with the ENT this morning, I knew deep inside my heart that tubes were a big possibility.  I stubbornly resisted the thought however because as I said, I was hoping we would be given a Lenten miracle inspite of the fact that I had been remiss of my usual Lenten sacrifices.  Hearing the explanations from the doctor made me want to cry again because I didn’t want to add another surgery this summer except for the 2^nd syndactyly release which was originally supposed to have been scheduled last year.  Yes, I really am pig headed and I associate that to the fact that I was born during the year of the Pig. 

          To top it off, I was hoping to hear that the tubes would guarantee that her hearing would then be normalized.  But the doctor was quick to point out that while it is possible that the tubes would improve her hearing, it is also possible that it will barely make a difference.  Plus, because they would be using longer (and wider) tubes also referred to as T-Tubes, it is possible that even when these tubes are removed, the hole may not close anymore.  Swimming (which Nina absolutely enjoys) will   have to be done with extreme care.  With all the cons going on in my mind, I really had to ask why the tubes were necessary in the first place.  We were told that without it, the hearing loss could progress to the point where she could become completely deaf or, as mentioned previously, she could get Meningitis.  So there, that really doesn't give us much of a choice doesn't it?  Oh boy…

          So now our next step is either to seek a second opinion or get a second doctor who can perform the procedure in the hospital where her hand surgery will be done.  I guess that means more consultations, more tests and more doctors appointments.  Such is the life of my 3 year old daughter.

          But that’s the way it is… she isn't complaining so what right have I got to complain myself?  Besides, like I said earlier, I know that my daughter’s life has been filled with miracles since the day she was born and for that I should be grateful - not that I am ungrateful, in fact every night just right before I sleep, I can’t help but stare at her and thank the Lord for bringing her into our lives.  Still I wish that her life were spent more in the playground than in the doctor’s clinics. 

          Lord, I’m sorry for testing you – I should have known better.  I know that at this point in time, I just need to let go and let You work your plans for Nina.  Trust has always been an issue for me, You know that I’m always on the lookout for a neon sign flashing in front of my face whenever You orchestrate miracles in my life.   I am trying though, I’m trying really hard.  And this Lenten season, I know that with Your grace, Nina and the rest of us will be able to go through whatever challenges lay ahead of us.  We know that You will remain faithful to us every minute of the day, 24/7.  Let Nina's ears open up our eyes and our hearts that You continue to be on our side even when we have lost our way.  AMEN!

Wedding Advice from Fr. James B. Reuter, SJ

Last December 31, the year ended together with the passing of a very dear family friend - Fr. James Reuter. To many, he was known as Fr. Jim. To us, he was Tatang, Papa Bear, Pops, and Kamote. He never minded being called those pet names. To his erring kids/students, he called them "my duck!" Hearing those words from him and you knew you were in trouble. But he was a very loving man and would never fail to give us hugs whenever we visited him. All holy masses said by Fr. Reuter came with a general absolution which was great for us. One time, he was asked to say 3pm mass on a Saturday. We asked if this would be an anticipated mass and someone commented that it was much to early to be one. His reply? "The Lord does not keep a stopwatch, this WILL be an anticipated mass."

Our family was among those privileged to have been close to him when he was alive. I say privileged because he is really a holy and inspiring priest. And so, after reading the blog of chuvaness.com where she wrote down the wedding advice given to them by Fr. Reuter, I decided to do the same.

Hubs and I got married in 2006. during that time, he was already sickly and so weren't even sure he could officiate the wedding. Luckily, nothing could stop him from saying no to us. Before he agreed to wed us, he requested to meet with us first. Then like chuvaness, he gave us several pieces of advice which I would like to share with all of you as well.

I hope that these words would help us nurture our marriages. I'm sure he would be happy to know that his messages have been passed on to others. For those who know of him, his remains lie in state at the Church of the Gesu in Ateneo. His remains will be buried tomorrow after the 8am mass.

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1. Never let the sun set down on your anger. To the man, always kiss her goodnight. To the woman, never turn away when he kisses you. If he sulks then the girl should be the one to kiss him but then it means that she is stronger/more than a man than him. It takes a man to be humble;

2. Say sorry. The man should say sorry first. Same principle as #1. The girl cannot court a man so he should be the one;

3. Pray together. Hear mass and take communion together;

4. Whatever unites you is good. Whatever separates you is bad; (this is where the advice to chuvaness comes in that they should always sleep in the same bed/room)

5. Have a single bank account. (Meaning do not have separate accounts. Related to #4 advice). Never fight about money;

6. Never go out alone with someone of the opposite sex other than your spouse. Always bring someone with you. He goes on further to say that even if there is no malice in your part, people who would see you and not know whom you are with could think thoughts about you and that would reflect negatively on you and on your husband.

~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~

Some of you may not agree with some of the things he said but just think about it na rin. These I feel are words of wisdom from a man who was blessed so many lives, including ours and who has experienced marriage albeit second handedly from the people who often run to him for advice (my parents included). As an anecdote, my mom was very close to him even when she was single. After graduating from college, Fr. Reuter helped her discern if she was to enter the convent or not. He officiated my parent's wedding as well and so whenever she and my dad had an argument, she would always run to him to tell him about it.

Tatang, we will miss you for sure but you have done much more than what was expected of you. I am pretty sure Mama Mary has escorted you to heaven by this time and that you are now embarking o a heavenly stage play with your crew up there. Say "hi" to daddy for us and rest assured that we will keep to heart everything that you have taught us.

Thank you, San Pedro Calungsod!

The Philippines recently celebrated the canonization of it's second Filipino saint - San Pedro Calungsod!  The canonization was done last October 26th in Rome by no other than Pope Benedict XVI.

With all the excitement going around, I was sure that novenas would definitely be abound and since my sister was on a business trip to San Pedro's hometown of Cebu, I requested her to get me a novena prayer to San Pedro.

I had several prayer requests in mind like guidance for the business venture that my friends and I were looking into and of course, Nina's Otits Media (ear infection) which I discussed about in this post.

As soon as I received it, I began to pray the novena although admittedly, there were some days when I missed out on praying.  Still I knew that our new saint would be kind enough to intercede for us especially since an innocent child was involved.

Today, I was finally able to squeeze in a schedule with the ENT from our HMO network.  Although we waited far longer than the actual consultation, it was well worth it.  The result of his check up?  NO EAR INFECTION, THE EARDRUMS ARE CLEAR!!!  I wanted to hug the good doctor but I dont think he would have appreciated that so I immediately shared the good news with hubs.  Of course, we're still having the hearing tests done and I'm still praying that they come out well.  Not that we've noticed any problems with Nina's hearing but I understand fully well that the doctors want to be sure taking into considering Nina's medical history.

So from the bottom of my heart, thank you San Pedro!  Thank you also because it appears that my wish to have a Pedrito doll is now possible.  Ins't he a darling?

For those of you who are interested in the Novena Prayer,  allow me to share it with you:

Prayer to Blessed Pedro Calungsod

Blessed Pedro Calungsod,

student, catechist, young migrant, missionary, faithful friend, martyr,

you inspire us

by your fidelity in times of adversity;

by your courage in teaching the faith in the midst of hostility;

and by your love in shedding your blood

for the sake of the Gospel .

Make our troubles your own

(here mention your request)

and intercede for us before the throne of Mercy and Grace

so that as we experience the help of heaven,

we may be encouraged to live

and proclaim the Gospel here on earth.

Amen.

When Babies are Called Home

I read some sad sad news today from Facebook.  One of the Apert families whose journey with their almost three year old son I was able to follow, lost their little boy suddenly while he was asleep.  I can only assume that the cause must have something to do with breathing issues that many Apert kids experience especially during their sleep but I have yet to know what the real story behind is.

Despite the fact that I have never met this family in person, the very thought of losing a child saddens me.  It saddens me more because as a mother of a child with Apert Syndrome, I find myself being able to relate with these "strangers" with whom we only share a virtual connection with.

This afternoon I've constantly been trying to dry my tears just thinking about Zane and what his family must be going through.  I know that no words will ever be enough to comfort his parents and so I say a silent prayer for them, thinking at the back of my mind that it could have been Nina.

No one wants to let go of their children, but when God calls them back into His fold, we are reminded that these children have only been lent to us by Him and that we are their earthly guardians/parents and that He is their Heavenly Father.

I don't want to live in fear over things that could happen and so I force myself to be cheerful, not to be affected by this loss and trust in Him that for everything He has His purpose.

Meanwhile, I ask that you say a prayer for little Zane whom I know is now back with his Father, back to being an angel that he really is.  Please pray for his parents too, that they may find strength during these times and that they be comforted with happy memories of the life that that was shared with them.

Asking for EARnest Prayers

We had originally planned on scheduling Nina’s 2^nd syndactyly release right after hub’s birthday especially since we were having a long weekend that time, not to mention the school semestral break.  Unfortunately, she developed a bad cold which progressed into a cough the week before the scheduled date so we had to postpone again.  Her doctors are adamant that whenever a surgery date has been set, Nina must be clear of any coughs or colds two weeks before the surgery date.  This is mainly to ensure that no complications would arise during the surgery since they need her nasal passages to be clear as for the general anesthesia.

Recently, the kids had been diagnosed with Allergic Rhinitis and Asthma (sadly both of which were inherited from me) and both of them have been placed on maintenance medicines just to avoid any episodes particularly during the pollen season and the wonky weather.   It was during one of those check-ups with the ENT that the doctor pointed out that Nina had an ear infection perhaps connected with her never-ending sniffles and the cough that went with it that time as well. 

For a person with Apert Syndrome, it is typical for the midface portion to be hypoplastic  or underdeveloped.  That being the case, when ear infections happen, sometimes the liquid/pus in the ear is not fully drained (because of the structure of the ear canal) and that could affect the person’s hearing.  To resolve the problem, tubes will have to be surgically placed in the ear to allow drainage. 

The doctor then requested for Nina to undergo several hearing tests so she could determine if tubes would be necessary in her case.  Fast forward months later, we realized that the tests were never done!  One was because hubs and I discussed that we should arrange for the test to be covered by our HMO but because the requesting doctor was not part of the network, we had to look for one that was.  But things started coming up and before we knew it, 5 months had already passed.  We returned to the first doctor and sadly that the infection was still there.  So now, the tests are imperative and urgent but I am still hoping for a miracle. 

Honestly, I don’t want Nina to have to go through any more operations.  I also know that the tubes in the ear can sometimes get clogged so it’s possible that the surgery isn’t just a one-time thing.  So while I’m scheduling appointments with an accredited doctor, I am also praying that the infection dies down and that the doctors will see that there really is no need for tubes to be placed in her ears.  Will you join me in praying for that please?