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.

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

Hands

Syndactyly is one of the characteristics of a patient with Apert Syndrome.  Simply put, it is when the fingers and toes are fused together.  While the bone structure underneath the skin may (or may not) be in tact - meaning there are bones for the fingers or toes, they are fused together by the skin.  There are actually several types of syndactyly with some hands being referred to as rosebuds.

Nina's hands were one of the first things that caught the eye of the doctors when she was born.  I vaguely remember my OB telling me that her hands looked like they had mittens on.  It is ideal for Aperts patients to have the digits or fingers separated before they reach 2years old because it is at that time when the child really starts holding/grabbing things.

We meet with Nina's hand surgeon today so that we can finally schedule the separation of her fingers which at this point she is eager to start using.

Our doctor, a plastic surgeon and hand specialist is suggesting that he only separate the thumb for practical reasons. But to this day, we are adamant that we want Janina to have the semblance of a normal life as much as possible.  She's a girl and I'd like her to have the chance of wearing rings later on, of playing the piano and of typing albeit in whatever manner/speed that may be.  I refuse to consider my daughter as a disabled child because she is not.  She is special - that is for sure, but she is definitely not disabled.  The doctor says that he prefers to consider function rather than aesthetics.  According to him, having the additional fingers would not improve the function of her hands that the most important thing is just for her thumb to be separated.  While I respect his opinion, I do not want to put a limit to my daughter's capabilities, more so to what God is capable of doing in my child.  I believe that if the Lord wants Janina to have full use of her fingers after surgery, He will allow it.  If my daughter wants to be a concert pianist - she can be one, regardless of how her fingers would look like.  The most important thing is for her to have all five fingers (of course if that is possible).

So armed with prayers to Mama Mary, Blessed John Paul, and of course to the Lord Almighty, we will face the doctor today to inform him of our decision -- that we want our daughter to have all five fingers if her bone and nerve structures will allow it.

Wish us luck!  We will definitely keep you posted.


~@~

PS... It's amazing what prayers to Mama Mary can do!  We met with the doctor this afternoon and he greeted us by simply asking us what we had decided upon.  He further added that he will do whatever we want and that he just wanted us to be fully aware of everything so that we would not expect the impossible.  For some reason, both hubs and I left his clinic feeling pleased with the doctor.  Yup, another answered prayer courtesy of Mama Mary!


We've scheduled Janina's surgery for June 7th at 7am (Manila time).  Please do not forget to keep Janina and her doctors in your prayers.