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.

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

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)

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.

Hopes and Dreams

Aside from this blog, I created the Apert Manila blog  hopefully to give Filipino parents of Aperts children with a touch-base / resource page.  Janina's doctors then suggested that I diversify the page to address not only the concerns of Apert families but all those with Craniofacial Syndromes.  Unfortunately, I realized that blogging is way much harder than I thought it would be.  Although I've managed to come up with posts on this page, to my great regret, it has become almost impossible for me to come up with the informative / educational posts on the other blog.

Hopefully I will be able to find a way to create more posts for both this blog and the Apert Manila blog.  Our dream is to eventually start a support group for families dealing with any kind of Craniofacial Syndromes.  Perhaps in the long run, we would even be able to help support / fund the surgeries of needy families to give their children a better chance.

Our household help told me one time that Janina was very lucky to have been born to our family.  They explained that had she been born to a family from their province, she would not have the opportunity to get the surgeries and medication that she needed.  They said that many times, children with disabilities from their provinces would either be left untreated or at worse, left for dead because the parents could not afford to bring them to the right doctors.  The thought saddens me because after seeing the joy that our daughter has brought to our lives, it would be a pity of other families would not get to experience the blessing that their child, regardless of his or her condition, would bring them.

So wish us luck in our endeavor and pray that we will have the strength, the means and the resources to put all these into reality.

For the meantime, please go on reading Apert Manila and do let me know what else we can do to improve it.  If you know of any families dealing with Craniofacial Syndromes, please encourage them to get in touch with us through this blog our through my Facebook page.

Marked Improvements

It's been a while since Nina started with her speech therapy classes.  Although I was initially not that pleased with her therapist because I felt that she was unable to maximize their (expensive) 1-hour sessions, I have to admit that she has contributed a great, great deal in Nina's progress.

These days, our little girl is like a parrot constantly mimicking what we say and what we do.  She has always been quite observant but these days, she constantly tries to make use of her growing vocabulary to point out objects and places around her.  We were surprised at how clearly she was able to say "umbrella" one time as well as other words like "fishy", "ayaw ko" (I don't like) and "hati tayo" (let's share).  Her teachers are surprised as well.  Of course, there are some words that are still difficult to understand but I know that with constant practice and with God's grace, she will continue to improve.

We are particularly proud that she has maintained her independent nature and would most of the time, refuse our offers for assistance, insisting that she be allowed to do things by herself, in her own way.  Yes, she is stubborn, but I believe that it's her stubborn determination and independence that helps advance inspite of the challenges she has ahead of her.  Now that's what you call a WINNER in the making!

Nina, you make everyone around you so blessed and so proud to be a part of your life.  You really are an inspiration!

our Little Miss Sunshine

Not Her But We

Whenever people see how far Nina has gone with her development, there will always be someone who would eagerly tell us that hubs and I make great parents and that she has improved greatly because of us.  Comments like these make me cringe - mainly because I know that we aren't perfect parents.  Now don't get me wrong, and this is not false humility but really - as parents, we can only do so much.  Yes, it is a fact that we try our best to do what we can for Nina, but I feel all these would be nothing if it weren't part of His bigger plan.

I personally believe that everything that happens has been planned even before we were born.  Our daughter has a mission on earth, and we, her parents have one as well.  In as much as we try our best to fulfill what we think is our purpose - if He does not anoint our actions and our decisions, these would be nothing.

They say our daughter is lucky to have us as her parents.  While that may be true, I say that we are even luckier to have her come into our lives because she has taught us so many lessons in life that we never expected, and has given us so many things to be grateful for.  So who is it that is blessed?  I'd say it was we rather than her... and all this is because of Him who never, never fails us - no matter how doubtful and unworthy we are.