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)

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?

Dealing with the Comments

It happened again!  Same place, same pool – in fact, I was actually wondering if it were the same kid.

If you’ve been following this blog, you would remember that I wrote about an incident that happened to us last year while we were at this same beach resort.  This weekend, while spending some time with family, it was as if we had a replay of events.  

Hamilo Coast in Nasugbu Batangas

There was this very lively chatterbox of a boy who decided that I was to be his playmate at the pool.  Actually, I was more of a passive sounding board to him, which was not new to me since Kuya does this to me almost all the time.  Apart from showing me his treasure (15 pieces of shells taken from the beach area), the little boy asked me what my order was for his make believe fast food resto. As with my kids, I decided to play along and ordered French fries.  Would you believe he charged me $450 for it – yes, in dollars!  (Perhaps he forgot he was in the Philippines).  Of course I told him it was too expensive and that was when he noticed my little girl. 

He asked me “why like that” pointing to Nina.  I asked him what he meant about the “why like that” comment and he repeated it and then as if to explain further, put his hands on the sides of his face and pulled them down, adding that her eyes were like that of a puppy's. 

at the indoor playground

Look, I know my daughter is cute, I will not object to that, but she is definitely not canine looking! 

Again, being at a loss for words, I simply told him that of course she did not look like a dog and that we all look different from one another.  Perhaps he felt that a long lecture was next or maybe his attention span could not take anything more than that and the little chatterbox moved away in search of some of the pebbles and shells that he threw into the pool, much to my relief.

Some time after that, while I was out of the pool and Nina was with her Yaya, I heard some kids ask her as well why Nina looked different and because I told Yaya to be tactful in dealing with those comments, she turned Nina away and commented that in fact she was a beautiful baby while giving her a kiss (great job, Yaya!)

I know we could have done way much better but incidents like this always catch me when I’m off guard.  In as much as I know I need to explain to them (the young ones most especially) that all children are made differently and that Nina was born with Aperts and went through an operation, but sometimes too much information might distract them from the lesson that I want them to learn.  Perhaps I arm myself with witty counter-statements that would at least create a impact on these kids so that the next time they meet someone who looks different, they would know what to say.  So how would you do it?  Do you have any witty lines in mind?

With Kuya and her cousin Migs

Oh yeah, a few minutes after I ranted about the incident on Facebook, I saw this post on a friend's wall.  Everything happens for a reason so I know that I was meant to read this post:  

Wherever we go, there will always be people who will judge us (physically, mentally.. everything). It will HURT... but this shouldn't bring us down because God made us this way. All we have to do is to pray for those kind of people, surrender them to God (no evil thoughts.. for it will not bring glory to God..It will not please Him) and be thankful to God for designing us the way we are now. 

~"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know them well." - Psalm 139:14

It's a difficult learning process - for me especially.  But I know I'll get there.  But it is without any doubt in my mind that my daughter is a wonderful work of God and that in His eyes (and in mine) she is perfect.  No matter what other people may say.

Hey, I still need those witty comeback lines so that I don't punch someone's face the next time this happens, so help me God!  Leave a message if you have any :)

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.