Born This Way

I know that no matter how hard I try to protect her, there will time a come when Nina will experience teasing from other kids, stares from parents and strangers, simply because she looks “different” from the rest.

I am inspired by those people who, inspite of having Apert Syndrome, are able to confidently deal with life and with other people.  I’ve asked them about it and they said that they were brought up no differently from their siblings - no special treatment, no concessions, just like everyone else.

Come to think of it, we all have our differences.  Some may be more apparent than the others (like those with unusually shaped heads, hands and eyes), but they are human just like us.  We are all different but each in a different special way.  However to most of us, if something does not conform to the image that we have in our minds or to what we normally see, we immediately consider them to be abnormal.

We know that all of God’s creations are made perfect since we are all made in his image and likeness.  Genesis 1:27 "So God created man in his own image, in the image of God created he him; male and female created he them”  Therefore it is safe for us to conclude that all of us are created perfectly in His eyes.   Different, perhaps, but perfect nonetheless.

Psalm 139:13-16 For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

Jeremiah 1:5 "Before I formed you in the womb, I knew you. Before you were born, I set you apart for my holy purpose. I appointed you to be a prophet to the nations."

Which leads me to why I’m so hung over the new Lady Gaga song, “Born this Way”.  Call me conservative and old but I was never really that big a fan of Lady Gaga.  I guess she was much too outrageous for me.  But when I heared this Fil Canadian kid sing her song on You Tube, I decided to check out the lyrics and that’s when I fell in love.

Here’s the latest you tube video of Maria Aragon singing for Ellen Degeneres

And here are the Lyrics to the song:

It doesn't matter if you love him, or capital H-I-M 
Just put your paws up 
'Cause you were born this way, baby 

My mama told me when I was young 
We are all born superstars 
She rolled my hair and put my lipstick on 
In the glass of her boudoir 

"There's nothin' wrong with lovin' who you are" 
She said, "'Cause He made you perfect, babe" 
"So hold your head up, girl and you you'll go far, 
Listen to me when I say" 

I'm beautiful in my way, 
'Cause God makes no mistakes 
I'm on the right track, baby 
I was born this way 

Don't hide yourself in regret, 
Just love yourself and you're set 
I'm on the right track, baby 
I was born this way 
(Born this way) 

Ooo, there ain't no other way 
Baby, I was born this way 
Baby, I was born this way 
(Born this way) 
Ooo, there ain't other way 
Baby, I was born this way 
I'm on the right track, baby 
I was born this way 

Don't be a drag, just be a queen 
Don't be a drag, just be a queen 
Don't be a drag, just be a queen 
Don't be! 

Give yourself prudence and love your friends 
Subway kid, rejoice the truth 
In the religion of the insecure 
I must be myself, respect my youth 

A different lover is not a sin 
Believe capital H-I-M (hey, hey, hey) 
I love my life, I love this record and 
Mi amore vole fe yah 

I'm beautiful in my way, 
'Cause God makes no mistakes 
I'm on the right track, baby 
I was born this way 

Don't hide yourself in regret, 
Just love yourself and you're set 
I'm on the right track, baby 
I was born this way 

Ooo, there ain't no other way 

Baby, I was born this way 
Baby, I was born this way 
(Born this way ) 
Ooo, there ain't other way 
Baby, I was born way 
I'm on the right track, baby 
I was born this way 

Don't be drag, just be a queen 
Whether you're broke or evergreen 
You're black, white, beige, chola descent 
You're lebanese, you're orient 
Whether life's disabilities 
Left you outcast, bullied or teased 
Rejoice and love yourself today 
'Cause baby, you were born this way 

No matter gay, straight or bi 
lesbian, transgendered life 
I'm on the right track, baby 
I was born to survive 
No matter black, white or beige 
chola or orient made 
I'm on the right track, baby 
I was born to be brave 

I'm beautiful in my way 
'Cause God makes no mistakes 
I'm on the right track, baby 
I was born this way 

Don't hide yourself in regret, 
Just love yourself and you're set 
I'm on the right track, baby 
I was born this way, yeah! 

Ooo, there ain't no other way 
Baby, I was born this way 
Baby, I was born this way 
(Born this way ) 
Ooo, there ain't other way 
Baby, I was born this way 
I'm on the right track, baby 
I was born this way 

I was born this way, hey! 
I was born this way, hey! 
I'm on the right track, baby 
I was born this way, hey! 

I was born this way, hey! 
I was born this way, hey! 
I'm on the right track, baby 
I was born this way, hey!

With all that being said, I hope that my little girl grows up with the knowledge that no matter what other people say, she is still perfect and that nothing and no one can take that away from her.  And during those times when she feels discouraged and sad for not being a part of what society considers normal, I pray that she find strength in Christ.

II Corinthians 12:9-10 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.

Philippians 4:11 Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content.

Breastfeeding is The Only Way

The moment I found out I was pregnant, breastfeeding was never a question. When my eldest child was born, it was then that I realized that breastfeeding was not as easy as it seemed.  In spite of the challenges, we persisted and succeeded.

When my second child, Janina was born,  she was diagnosed with Apert Syndrome, our immediate concern lay on her chances of survival since very few doctors knew about the Syndrome.  Janina had breathing and cardio issues and had to be kept in the high-risk NICU.  Later on, when the doctors assured us that children with Apert Syndrome could live normal and healthy lives, we were able to get our bearings and focus on the long road ahead of us. 

Janina was born with a high-arch palate the doctors expected her to have difficulty breastfeeding.  The first time the nurses tried to feed her from a bottle, milk would spill everywhere.  Whatever little milk I could express, my husband would immediately bring over to the NICU.  As Janina gained strength and the tubes about her were slowly removed, I was allowed to breastfeed directly.  It’s hard to describe the overwhelming feeling of having a frail baby nursing in my arms.  My best comfort was that every drop of breastmilk would definitely help her become strong enough for us to bring her home ASAP.

Several cases of Aperts children having difficulty in breastfeeding.  However, Janina proved to be resilient and determined to take nothing but breastmilk. 

When she had her first cranial vault at 10 months, one of the first questions I asked her doctors was if the head surgery would allow me to continue breastfeeding her and I was told that I could. 

Janina had to be kept in the neurosurgery ICU immediately after her surgery and was not allowed to take in anything.  So in between bits of sleep and watching over her, I would pump milk and store it.  Soon, she was allowed to take in liquids, except that we could still not carry her – so we had no choice but to give her expressed milk.  Perhaps it was because of her high arch pallet or maybe because the bandages and tubes made her uncomfortable, drinking milk from the bottle was somewhat difficult for her and a lot of the milk would spill from her mouth.  I couldn’t wait till it was okay for us to carry her so she could feed directly.  True to her form, as soon as she was able to feed directly, there were no more spills and she fed heartily. 

We were able to bring our little girl home in five days.  Two days later the doctors removed the staples from her head.  While she has yet to undergo several more surgeries, we are confident that she will be able to weather these with ease. 

Many would think that special care is required for children with special needs.  I wouldn’t say that my daughter is a special needs child because she’s just about as normal as any other child save for some physical differences.  I believe every child has special needs – the most important of which is all the love, care and attention that their families can give them.  I breastfeed my children because it’s the best way I know of caring for them and ensuring their health.

At 16months, Janina remains purely breastfed and I intend to keep it that way for as long as possible. 

The Beginning of Our Journey

In spite of my age, I would say that my pregnancies have been relatively light and easy for me.  Bouts of nausea were more frequent when I was carrying Janina, but I liked that too because it allowed me to get rid of all the extra weight I had gained during my first pregnancy. 

We were diligent in meeting our doctor’s appointments and in getting all the tests that were needed so we were surprised when Janina came out and the doctors told us that something seemed to be wrong because her head was larger than the usual size and her fingers and toes were fused.  Back in the OR (I delivered via C-Section); those words had not sunk in yet. 

When I returned to my room and reality set in, I was a complete mess.  My OB explained that it that Janina appeared to have Apert's Syndrome, a genetic disease wherein the skull bones were prematurely closed, the midface is retruded, and the fingers and toes are fused.  She was quick to emphasize that it was nothing that we did or did not do and that these occurrences are usually sporadic.  (Unless one of us carried the gene).  Both J and I were at a loss.  Looking back, I can only imagine how distraught he must have been worrying about both the baby and me (not to mention our hospital bill).  Each time a doctor would come to the room, I would immediately break down.  Many times after that, he would just find me crying inconsolably.  

One of my first questions was what Janina’s chances of survival were.  Initially, the doctors could not tell us.  Our little one had been placed in the high-risk level of the NICU, under close monitoring.  It appeared that she had difficulty breathing and that while she did not have a cleft palette, she had a high arch palate.  The fingers on her hands and the toes on her feet were fused although it appeared that the digits were complete.  Those were just the physical indications.  It was too early on to tell what else was wrong.  They could not say if she would have hydrocephalus, a heart problem, eyesight problems, or something else, all we could do was wait and pray. 

I was lucky my Aunt who was a Pedia Cardiologist in NY was visiting at that time.  While she too could not give a definite answer, she was more re-assuring that our baby would weather the next 24hours.  Eventually we (and the doctors) got more facts about the disease and how much it was affecting our baby.  The websites on Apert's Syndrome probably had a sudden increase in hits over the next few days as the doctors, family and friends all wanted to know more information about it.  Janina was kept in the High Risk (level 3) Neonatal ICU for one week with the doctors monitoring her breathing, her vital signs and her feeding. She was the biggest baby in Level 3 and each time J and I would go in to visit her, we could not help but also say a prayer for the smaller and frailer babies with her.  Eventually, she stepped down to level 2 as she increased her feeding.  We had to supplement my breastmilk with formula as her appetite was increasing and probably because of all the stress I was in, could not produce enough milk to feed her exclusively.  Several tests also had to be done among which was a 2D echo which showed that there was an open blood vessel in the heart (Patent Ductus Asteriosus) and small hole in her heart (Atrial Septal Defect).  The doctors and my aunt assured us that these were nothing to be worried about and that we could expect it to heal itself as she grew older.  We were also told then that the life expectancy of children with Apert's Syndrome were normal although numerous surgery would be necessary. 

A week after she had been born, Janina was finally discharged from the hospital.  It was a big celebration for us because it was also J’s 40^th birthday.  On the way home, we passed by the chapel of Padre Pio to pray for little Janina as well as to give thanks for allowing us to bring her home in time for her daddy’s birthday. 

Both J and I consider ourselves lucky to have the continuous and overwhelming support of our family.  In the hospital, they assured us that they were there for us in doing everything that could be done for our baby to live a normal life.  They said that we were most likely the recipients of this special angel because God knew that both J and I had more faith than any of them to overcome this.  (Talk about pressure.)

Except for occasional bouts of jealousy, N has been a wonderful kuya (big brother) to Janina, often smothering her with kisses any chance that he gets.   Janina always gets an automatic good morning kiss from her kuya when we wake up but I will always have to ask for mine.  I asked him one time whom he loved more, Janina or myself – and of course he answered Janina!  I should have known better than to ask. 

We have nothing but pride for our little baby.  As early as now, Janina shows a lot of determination and perseverance in doing what she wants.  And so we know that she has been blessed and that inspite of what others may consider to be a disability, to our little princess, it’s just simply how she is.

"I will give thanks to You, for I am fearfully and wonderfully made; Wonderful are Your works, And my soul knows it very well." Psalm 139:14