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.