Thursday, June 23, 2011


As mentioned in my previous posts, syndactyly in the hands and feet are one of the characteristic traits of Apert Syndrome.  At two years old, a child begins to “learn” how to make use of her hands via grasping, grabbing, holding, etc.  This is a crucial time for the development of her motor skills – both gross and fine.  Such is the reason why the release of the fingers, most especially the thumbs, need to be done before the child turns two.

I hate to admit it but I have a weak stomach when it comes to blood, and surgical procedures.  When faced with bloody situations, I often feel my vision turning black and my knees feel weak.  Hence, I am almost always -- a useless body when it comes to this.  I once almost fainted once when my dog’s toe nail bled after having it cut at the groomers.  I excused myself and sat down pretending I was tired but the truth was that if I had not done so, I would have probably collapsed right there and then.

You can probably imagine how anxious I become whenever Janina has her surgeries.  When she had her craniotomy, I was a wreck before the procedure but by God’s grace, I was surprisingly calm and composed throughout the procedure as well as the recovery period.  Although I had a little difficulty with dressing the wounds and staring at the staples, her wounds did cause me as much anxiety as I had expected.

I was somehow hoping it would be the same for me when she had her syndactyly release but it was not so.   The procedure lasted for about 5 hours.  According to her doctor, it only took them 30 minutes to release the fingers.  The sewing process however took a while.  Because of the fusing, it was necessary for the doctors to get skin grafts from her groin.  So when Janina came out of the OR, her hands were bandaged up to her arms (to minimize movement) and she had stitches in the groin area as well.  Initially, I was okay with what I saw.  The wounds were covered (except for the tips of her fingers) so it wasn’t really that gory.  But when all our family had left and it was just the three of us left in the hospital room, I suddenly felt so sorry for everything our little girl had to go through.  There I was crying beside her, asking myself if we had done the right thing.  Deep in my heart I knew we did, but I couldn’t bear to see her go through it.

Two weeks after the surgery, the doctors removed the bandages and exposed her hand – fingers and stitches galore.  My eldest sister helped the yaya (nanny) remove the bandages so I was spared from the initial sight.  Janina herself seemed to be surprised at how her hands looked because they say she cried immediately after seeing her hands.  But after the initial shock, you could see that she would carefully look at them, inspecting them and trying to see how they work.

Kids are far more resilient than we think because while the stitches have yet to fall off, she is already starting to use them without any fear or trepidation.  Sometimes I get scared that she might feel pain but that doesn’t seem to bother her at all.  We really are blessed to have such a determined and brave young girl – I have a lot to learn from her still.

Her big brother did not like seeing Janina’s hands right after the bandages were removed.  He didn’t want to go near her at first but now, he states matter-of-factly that that Janina has wounds on her hands and that she’s “kawawa” (pitiful).  As for me, I try to be brave but sometimes I take a hard look at her hands and start feeling weak in the knees once again.  I can’t imagine how other mothers go through this but I realize that we really don’t have much of a choice.  I only rest in the fact that it doesn’t seem to bother my daughter so it shouldn’t bother me as well.  If she can handle it, why can’t i?  Like I said, I have a lot to learn from my daughter.  No wonder she has come to bless our lives.

So while we are still in the healing process, my daughter is teaching me each day to be brave.  I can’t wait for the time when her hands are completely healed and I can start teaching her to play the piano.  I am excited at the thought of working on craft projects together – I already have so much lined up for us to do!

According to the doctor, complete healing would take about 2 months (if I remember him correctly).  On the 4th month, we can schedule the second stage of the syndactyly release so that she can have all 5 digits.  For now, we need to take things one step at a time.  I know that with God’s grace, we’ll be able to handle it. 
A sample "Finished Product" of a completed syndactyly release

Thursday, June 16, 2011

Forever Daddy's Girl

Because Father's Day is coming up, I thought of importing an old post that I had on my Friendster page.  Looking through that blog made me reminisce a lot about the time when hubby and I started going out up to the time we started a family... Looking back, I would never trade places with anyone.  I am perfectly happy where I am today.

Being the youngest in a family of five and a carbon copy of my father, it comes as no surprise to many that I am my dad’s pet …the favorite …the apple of his eye … daddy’s little girl.  My brothers and sisters, all being mature adults that they are now have already conceded defeat in that aspect.  Sorry guys…  tough luck!  Hehehe

I’ve not been the best daughter though - having had quite a share of fits, bratty/bitchy tantrums (depending on my age then), and whatever crazy stuff you could expect from a child trying to gain her independence and leave a so-called mark in the world. 
Through it all he’d just be there, quietly watching - never failing to show his support whenever he can.  It was therefore difficult later to on watch what I used to recall as a gentle but strappy and energetic hero slowly deteriorate into a frail and helpless man.  Gone were the times he and I would engage in a tickling frenzy or when we would share secret signals and end up trying hard not to laugh so that the others won’t notice.  Rather than him giving me advice on what to do at work we would often find him staring blankly into thin space - somewhat like being in a world all of his own. We would make efforts to include him in our dinner table conversations, trying hard to be patient in deciphering what he was struggling to say.  But it was no longer like before.  Age does that to everyone.  As children, it never crosses our minds that someday rather than having our parents taking care of us, the tables would turn and they will be the ones dependent on us for their simple needs. It was difficult and it was heartbreaking - to have to see a stalwart idol slowly breaking before your very own eyes.  Through it all, my father succeeded in doing something that he had wanted to do all these years - and that is to bring the family closer to one another.

My dad is no longer with us but we take consolation in the fact that where he is now, there is no more pain or suffering - only peace and comfort.  Sadly however, I will never get my wish that he be the one to walk me down the aisle.  But I know that wherever I may be, whatever I do, my dad will always be with me.  He (and my mom of course) made me the person I am today and person I will become until I pass on from this life.  The love my dad has given us has made a great difference in our lives and even though I’m all grown up now, in my heart he will always be my "daddy" and  I will never be ashamed of the fact that 
I am a Daddy’s Girl. 

Love you Dad and I miss you so, so much.

Tuesday, June 14, 2011

All I Need to Know About Life I Learned by Breastfeeding

I found this posted in one of the forums one time and thought it was something worth sharing to everyone.  Apparently, this was copied from a T-Shirt somewhere.  Whoever came up with that shirt, thanks!

1. Mammals are great mothers.
2. Parenting is a 24 hour job.
3. Good things come in all sizes.
4. Our choices have consequences.
5. Some people do have to work harder than others to succeed.
6. Time and Patience improve most situations.
7. Feeling “let down” can be the best feeling in the world.
8. To do something well, you must do it often.
9. Man-made schedules do not fit many circumstances.
10. Some “experts” are not.
11. The best things in life are really free.
12. If you follow your heart, you will be a better parent.
13. Children always, eventually, move on to a new phase.
14. The longer I breastfeed, the more lessons I learn.
15. When you know you are really doing the right thing, it does not matter what other people “think”.

Saturday, June 4, 2011

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

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

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

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

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