Friday, March 15, 2013

Compatible With Life - I Guess Not...

When our baby, Lilly, was conceived, we were the happiest people alive. We thought that our lives were finally complete. At six months, we found out that our baby had complications. I cried immediately while at the hospital while the husband was silent but he felt weak. We didn't know what to say to each other but my OB gave me hope and said that we might need a second opinion. We dreaded that second opinion but prayed for better results. Unfortunately, they never came. The results only confirmed our fears. We worried for our little one, just like many parents would for their children. Although my OB was deeply saddened with the news, she was able to give us hope by telling us that our little one was compatible with life and that she had a high chance of living. We felt relieved to hear that but she said that our baby might not be 100 percent normal in the end. At first, we were sad to hear that but in the end, it all came to the point where we would accept her regardless of her condition. It took us four ultrasounds to actually accept the fact that our baby had Spina Bifida and Hydrocaephalus. It was called an Arnold Chiari Malformation II in medical terms. Our baby would live after the fluids from her brain would be drained using a shant while her back would be needing surgery to remove the growth and somehow to repair the nerves which could affect her lower body's movements. We knew of the risks involved. We were just hopeful as we held on to our blind faith. We knew that the operation would be a major one especially for someone so young. Yet, we remained positive as we knew that our baby was a fighter and that God will not let anything bad happen to her. Sadly after 9 days of being alive, she passed away. Now, I question myself in more ways than one. Could she have lived through the surgery? Was she really compatible with life? Was she really meant to be with us? I know now that God had other plans for her. I just feel sad that she was taken away so early from us. I still cry when I remember her. I still speak to her. 

But it isn't just me who has been greatly affected by this sudden loss. My husband has been greatly affected by her passing too. I remember the night when we were praying so hard as we found out that our baby was in distress. He was not able to visit her that day while I was. I remembered how beautiful and how well she was then. Her condition actually gave me hope that she would be staying with us longer. Too bad that I mistook that message differently. She opened her eyes for me which was not normal for babies her age. I spoke to her and begged her to continue fighting. I prayed for her twice then. I was crying as she looked at me. Her eyes pierced through my soul. I felt happy then. Too bad she was saying goodbye and probably was telling me that everything will be alright. She was telling me to let her go. Too bad it is hard to do so. I told her how much we miss her and we love her. I even told her we would visit her more often and that we couldn't wait to bring her home. That night when the bad news broke out, my husband howled in pain. He cried loudly and punched the wooden cabinet in front of him. He was not just distraught. He was broken. Although I have seen him sad before, I have never seen him like that. He was clearly devastated. We both were. But we both did not regret bringing her into this world. It was an honor to be her parents even just for more than a week. Both of us need to be strong now. We are hopeful that one day, God would bless us with another child who won't be taken from us just like that. Nobody expected her to die. Even our doctors were shocked but her time has come and what else could we do but accept it.

When I was 7 months pregnant, I read about Lilly's condition. Then, I stumbled upon a website which made me cry. It had stories about couples who had children with different conditions. Most of these couples either had children who died or those who they terminated before they were born. My husband and I did not have the heart to do that to Lilly. To some people, we might be selfish because we only thought about our joy without thinking about her pain and suffering. I cannot defend that. All I know is that she is our flesh and blood and that it is a sin to kill someone so innocent. She had the right to live even if it was just for a couple of days. I don't want to judge the people who did what they had to do. That is what they believed was right. Who am I to question that? It is their lives after all and not mine. However, at the end of their stories, they often feel guilty and wonder what would have happened if they let their children live. Even if I let Lilly live, I still feel guilty deep inside. I feel guilty because I know I could have done something for her but I wasn't able to. I feel responsible for her condition especially since I was her vessel for 8 months. Now, I am somehow scared for our next baby but hopeful that things will turn out better next time. 

I guess not all pregnancies have fairy tale endings. Same goes with relationships. I am just glad that even if my pregnancy took a turn for the worse, my husband is still by my side taking care of me especially in these hard times. Like me, he is grieving. The sad part about starting over is the fact that we have lost something and have left something behind. This thing has left a hole inside us that no one and nothing can ever fill. We will continue to carry this pain, learn to hide it and live with it because we don't want it to go away. We don't want to forget our little angel. Lilly will forever be a part of us now no matter what. Many people have said many comforting words to us but words cannot describe how we feel. We know how much we miss her and love her but we also know that we can never be together for now. Many people have said we must be strong and we should try to be happy. We are doing just that but we cannot promise not to cry for despite everything, we know that our tears are not because we are sad for her not feeling pain anymore, we are sad because we can never hold her and be with her but we know that someday we will be able to do just that. 

Before Lilly passed away, I spoke to many people who knew about her case and many of them gave me hope that she would be fine. They said that many people who had them lived and although they could not confirm their life expectancy, they were sure of their survival. Even my OB and Lilly's pediatrician and surgeon were expecting a successful surgery which is why all of them were shocked when she died. I don't think they gave us false hope. Perhaps Lilly's existence was merely temporary and was not meant to be a long term one. Just the other day, I read a short story about the oldest man alive with Spina Bifida. Although he does not have Hydrocaephalus which helped him survive then, he is still a survivor. He is said to be 90 years old now. I could have wished Lilly was able to live even just for a couple of years but then again when I think about her pain and suffering, I realize perhaps God's way of healing her was to take her away. After all, we have been praying for her healing ever since she was inside me. Maybe God has a plan but only he knows that. Although, my husband and I are walking blindly now, we still have hope and faith that one day, we will be able to find the way. We know that God will lead us to the right path and that our little Lilly will always be by our side - although not physically, she will be with us in spirit. 

This story just proves that nobody can know if someone will live to see tomorrow or not. Regardless of the medical diagnosis, only God knows when we will be taken away to Heaven. This is why we should always tell the people that we love how much they matter to us for we might not be able to do so if we keep on putting it off for next time. I am only thankful that I was able to tell Lilly how much she meant to us. She will forever be our little angel, our first little princess and most of all, our treasure that we do not intend to neglect. She may be gone but she will never be forgotten. Our hearts will forever beat for her. Our minds will always think of her. I just hope that she knows all this and that she will always be watching over us. We are thankful that we had her. We love you, Lilly - now and forever. 

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