How Can I Help It?

How can I not help looking at other girls and thinking, “I wanted a daughter to grow up into something like that”?

How can I not help looking at babies that are the same age as Isabella and think, “she should be doing those things by now.”

How can I not help but look at younger babies and see how developmentally far ahead they are?

How can I not help but look at other pregnant women, and think, “Maybe she will have a special baby too?”

How can I not help but to feel shame upon admission of some of things that pop in my head, such as knowing that I LOVE ISABELLA, but, I am not completely over the disappointment (not her fault, I’m not blaming her, there is no one to blame really), and therefore I find myself that I am not head over heels in love with my very own daughter just yet.

How can I not help but to compare sometimes, to feel envy sometimes, to still feel pity for myself sometimes?

How can I not help but to feel a pinch in my heart for the inquiries of the many doctors we’ve met, or with things that should fell neutral like filling out forms and checking boxes at a doctor’s clinic?

How can I not but sometimes help to have to put on another persona when I do IEP meetings and remember to conduct it as a teacher and to keep it professional and feel that detachment to how close I really am to that whole IEP process?

How can I not but help to feel a sting when I work on my daughter’s scrapbook and scrounge for something to write about the things she can do month per month when she has not gone pass the 0 to 3 mo developmental range and her skill gains she has made are only for the “well-trained eye”?

How can I not but help to be cynical about the neutral well meaning comments and inquiries of people that know about my daughter? Or when you see someone approaching and they have that look and you just have to be ready to dodge the questions because you’re just sure that they are coming.

How can I not find it sarcastically funny that I have become a familiar face at the pharmacy, or having my voice being heard on the other end of the line at a doctor’s clinic?

How can I not but help to keep trying to use humor as a coping mechanism trying to find the funny in every situation, and yet catching myself sometimes go "hahahhahaha, well, wait a minute, that's not really supposed to be funny?" and then I laugh again.

How can I not but help to sometimes feel sadness come over me whenever we pass through the girl’s clothes section at the mall? That there is this aching in my chest just looking at baby girl clothes.

How can I not but help to feel guilt every time I need to lie to a stranger about my daughter’s real age when they ask? And to try to make sure that I have not told that person that my daughter is 3 months old for the past 3 months, such as the lady at the grocery store, who started wondering because she gave me that quizzical look?

How can I not but help to feel alone sometimes…. To feel that nobody understands, to feel that I do not get the emotional support that I need, even when I am already “screaming” for it? Or to feel alone and yet not wanting to be helped or supported?

How can I not but help to try and work through all this uncertainty and the not knowing what to do?

How can I not help but to go through waves of grief, even if they further spaced apart, less intense and more brief?

How can I not but help to shed some tears as I type this down?

How can I not but have to force to help myself every time I hit walls of moments like this?

How can I not but help to just keep on holding on to hope, love and faith and praying to god to help me through this, because god is really all I have… my refuge, my strength, my deliverer.

And although, I have come this far, when 11 months ago I thought id never ever bring myself to get to smile genuinely ever again, I know there is still a long way to go, how can I not help but to sometimes doubt if I am in a way making progress in this whole things taking time, things being a process, things coming in stages, taking things one day at a time deal?

How can I not help but to sometimes just put a mask on, feign being fine, and drown myself with busy work, so I don’t wallow in that dark pool that I have most challengingly brought myself to emerge from several months back? Because it seems that it works and I actually catch myself, hey I’ve been feeling alright this past couple of months.


How can I not help but to give in sometimes to the many complex emotions, such as  right now, just to feel that cathartic release.

A Temporary Loss of Perspective

I just realized that my Isabella stopped playing with sounds… she does not coo, or babble as much as she did. I realized that she hardly really babbled or cooed. She would however make sounds that seem like she is calling for us. But that was mostly it.

A lot of children with WHS are nonverbal…. So if my Isabella will grow up non verbal, it should not really surprise me. However, when I spoke to a friend of mine who is a speech pathologist regarding this babbling issues I have been having, she adamantly had to confirm my strong suspicions that my daughter would most likely fall into the non verbal category of WHS children. And as much as I knew about this possibility, I felt a pinch in my heart.

So, this weekend I found myself in a place where I was praying fervently…. In that moment of sincere and deep prayer, I was bargaining with God. I was trying to cut him a deal to perform a miracle and make the “speech happen”.  Then I started crying.

I cried not because of pain…. I cried because for the first time, I understand the meaning and depth of the word “desperation”. I was in a very desperate place. I came to understand that “desperation” can so easily be mistaken for hope, however the underlying emotion between hope and desperation are entirely different emotions.

Forlorn hope aka desperation is losing focus of the good promises that lie in the future…. Positive hope is keeping things in perspective and having a happy and contented disposition… it is more than just optimism, it is believing, it is having faith, it is taking in that unknown future with a trust that is enveloped with spiritual grace.  

I then stopped my bargaining process with the Lord. I came to realize that there is no need to bargain for anything. I get what I get and I should be content.

Why pray for a miracle?

My daughter is not sick.

A trade or bargain will not change things.

I don’t think that it could ever be possible to wake up one day and find my Isabella “normal”.

Nothing is wrong with having a daughter like mine.

Nothing is wrong with Isabella.

She is fine and she is happy and she will be who she is going to be and she will be okay.

Everything will be okay.

Why pray for a miracle?  

Have I not completely accepted her?

I should by now.

I should have, by now, accepted my lot wholeheartedly.

Next time I find myself in a place of desperation… the miracle I would be praying for is for my complete conversion to acceptance.

I so desperately need that kind of miracle in times that I lose sight of positive hope.

The Crosses We Bear

A couple of years ago, I have this “convenient” relationship with god. I go to church when I feel like it and I pray when I find the time.

I do thank him for the luck and the blessings and the good tidings, but I really did not see him as the one who orchestrates the events in life. He is not the author of my life. I was the author of my own fate.… I used to believe that everything that I have reaped is because of what I have sown myself. God was merely a go to entity for times of crisis… major crises, when all hope is lost. He was an icon of hope… a symbol no different from Santa Claus, the Statue of Liberty, or a four leaf clover.


For many years, things came easy and we’ve been blessed by many things, but my spouse and I both felt that something was seemingly lacking… we both know that we need to nurture the spiritual aspect of our life, but we still kept choosing to be busy with other things. We kept putting off the nurturing of our spirit under a pile of things to do… and despite the knowledge of this need, we didn’t really think it was pressing enough to pay attention to right away. Our “spirit” was no different than another thing on our to do list that we needed to get done. “God”, was on our to do list, more specifically at the end of our to do list. We are guilty of putting god as our last priority that we will get to when we find the time…. Until a year ago, we eventually did.


A year ago my husband and I decided to participate in the Christian Life Program (CLP). We figured, ok its time. We told ourselves that since we do not have a major crisis in our life, “God”, however we may interpret him to be, will not be “judging” us because we only remembered him because we are in dire need. We figured that since we’ve been blessed we owed him at least that.


So we went to attend the CLP… “Friday” church as we called it. I was skeptic. I had all this mind noise and all these questions that challenge what was being said… I was preoccupied with what the speakers said that I found to be debatable. I would listen to the talks and take it in objectively, much like doing research or working on a course of study. Then, during one of the CLP sessions, while I was busy trying to block away all the mind noise, and asking myself “what am I doing here?” I found myself transfixed, on the picture of Jesus knocking on the door…. It was then that I realized that I was taking all the teaching the wrong way. I was looking at faith from the wrong perspective. Faith is not a matter of the “head”, it was a matter of the “heart”.


It was then that I felt a turning point whilst undergoing the CLP program. I have opened myself to the teachings. My son further motivated us to commit to finishing the program as he gets really excited about going to “Friday church”. We were able to attend the 3 modules, the 12 talks on Friday evenings after a hectic work week and me ALSO being PREGNANT at that time. But I didn’t mind… even though I was feeling extra tired from being pregnant, it became important to me…. For the first time, God was at the forefront of our daily life. Honestly, we found ourselves wondering why we didn’t let him in sooner. It was wonderful and we felt the immensity his love. There was nothing else that we needed. Everything was just going to be perfect from then onwards…. And so I thought….


Not long after we have completed the CLP… on November 13, a Friday, at my 36th week of pregnancy I received a phone call from my doctor. He said that the ultrasound we had a couple of days back revealed some concerns about our baby. He said that she has a hole in her heart. Eventhough we were worried, we know god is there…. and we prayed.


When we went for a more specialized ultrasound to have our baby’s heart checked, we were told by the perinatologist that there were concerns about my baby’s size, but most shockingly concerns also on the baby’s brain. They detected cysts. Again, eventhough we were more worried, we know god is there and we prayed.


We were then referred to Lucille Packard hospital in Stanford and met with a lot of specialists. And at an ultrasound we had there, they detected that my baby has multiple brain anomalies…. She has underdeveloped brain structures, brain cysts and some fluid. This was confirmed by fetal MRI scan, that then also added detection of a liver cyst, and concerns about the baby’s size. And eventhough a bigger worry was added on our list of worries, we still believe that god is there, and we prayed.


The doctors then told that a c section should be performed because of all these concerns. So on December 9, feeling not quite sure about how to feel about the anticipation of the birth of our baby, she was born. She weighed 4 lbs 3 oz. She had trouble breathing and was intubated, but not long after she managed to breathe on her own. She was also found to have a cleft palate. Again, we countered our worries in the belief that god is there and we continued to pray.


She stayed 17 days in the NICU and during her stay she was jaundiced and her weight went down to 3lbs 5 oz. Doctors kept poking her for many lab orders that were requested. She had an IV on her head. She had wires attached to her tiny body that were attached to these machines making all these beeping noises. It was a lot to take in… too much for a small baby…. Too much for a mother like me. They inspected every single thing that they could inspect. And eventually they detected that she has underdeveloped kidneys as well. Yet another thing that we needed to add to our already long list of complications… but we still prayed... in fact, we prayed harder.


We then were told that we can bring her home the day after Christmas. On the day that we were picking her up from the hospital a yellow card on her bedside read that she failed her hearing test. We brought home a deaf baby. By this time, worry was more than just a constant companion, by this time it developed into anxiety that seem to live and breathe a life of its own … but we held on to hope and trusted in the lord and we prayed like we never prayed before.


December 28, my birthday. I received a call from genetics doctors. They finally have a diagnosis that ties all these complications together. My daughter has wolf hirschorn syndrome. I cried… I was disheartened. When I googled the syndrome I was devastated. The prognosis is very grim…. Profound mental retardation… global developmental delay, seizures, Might not talk or walk….. I stopped praying.


I had many plans for her. I weaved many dreams of what she would grow up to be. In the many different beautiful scenarios that I have pictured in my head, none of that included feeding a child with a g tube, managing medication, pushing a child on a wheelchair, going to doctor’s clinics instead of hula classes, and working on speech skills and making sounds instead of having to sing songs with her. How will I be able to do things that I had planned for us when we do not even know when or if she is going to walk or talk. I was not equipped to do this. Despite my being a special education teacher, I was not ready to do this. I am not even willing to do it. I just can’t.


I did not understand why of all times in my life it had to be now. Why did it have to be me? Why my family? Why my daughter? Why when we finally brought ourselves to the Lord. I didn’t quite understand…. Why am I the lucky victim of this sick stroke of genius bad luck? Why didn’t he listen? I never ask for a lot of things, why was I not spared? God was unfair and I was angry and I was cursing at him. I hated him…. I really hated him. He was not there… was never there… God abandoned us.


In my grief… in those dark days and dark dark hours when I was asking god why? Why me? Why now? Why when I choose to come to you lord? A voice came to me and said, “I made you come to me cause I know you would need me”…. Upon hearing this voice, I experienced this lightness…. It was the answer that I was looking for. That was the day that I found myself praying again.


I said, Lord you gave me this, you have got to help me through this. You do not have a choice but to help me like I did not have a choice when you chose me for this task. You have got to help me. You just have to.


It took many tears, many sleep less nights, many crazy fits, extreme bitterness, intense self pity, many mind looping worries, fears, anger and anxieties before I eventually found myself in a place wherein I have surrendered all of this to the lord. It was not easy getting over the fear and the envy and the disappointment and the anger. It was not easy. It was very humbling but it was not easy, but I did it. I’m actually still doing it. I gave it all to HIM…. I offered Isabella’s fate/future into his hands. I realized that my children are not my children, they are the children of god. I am merely a steward. I was… we were… entrusted to care for Isabella. He trusted us, because he has that much confidence in us to give us this immense task, he believes that we can do this… and though I was very doubtful about the strength I had in me, I eventually found myself in a place of acceptance. Though there are days that I still shed a tear, when I still feel fear, frustration and doubt… I can easily muster the strength and courage to tell myself, that I can do this, with god’s help and god’s grace I can do this.

" My grace is sufficient for you, for my strength is made perfect in weakness"

Of all the crosses that I have had to bear in my life, this by far is the biggest… and yet, this is the lightest. I let god take over and I trust that he will fulfill his promise of carrying me through. Through him all things really are possible, all we’ve got to do is believe.