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Although I tried to be cheerful and lighten up in front of Patrick. Internally I was in fear and worries. Both myself and my husband was constantly in that state.
Before Patrick's birth, we had discussed of our dreams how Patrick would be as he grows up. And now, having discovered he has this health condition, he may not even survive this challenge. I cannot help think of that.
We would meditate and pray. Calmness would come to us. Yet because we did not make peace with this emotionally, our emotional upheaval arose again.
It was very difficult to think of the possibility of our baby's death. Some may call this as being pessimistic. Yet upon reading on this disease, biliary atresia is a fatal infant disease. The maximum life span of a biliary atresia baby whose liver deteriorated to a severe stage would be two years of age. Some babies could not able to wait for transplant; some died within a month of the doctor's diagnosis to proceed with the transplant. Usually it was due to insufficient funds for the surgery.
The transplant done in India would be an estimated RM180,000. In China, an estimated up to RM250,000. In Taiwan, can be done for almost half a million Malaysian Ringgit. In Singapore, can be almost a million Malaysian Ringgit. These were the figures quoted to us. We don't have that kind of money. We do not have a wealthy background. If Patrick need to do transplant, we have to rely on donations. Some babies were not able to persevere until full amount was achieved.
The challenges that come with this. Psychologically. Financially. Physical deterioration of the baby. We were not going to deny this. However, the truth can be too painful to acknowledge. Though I may not outwardly cry, my heart constantly rained with tears.
That month of December was not a happy time for us.
Despite how I felt, I feel I should not project my fears onto our son. I continued on humouring him daily. Seeing him smiling more and more was my reward to continue.
Eventually the pain that came from his surgery disappeared. He was back to his active self, smiling and on occasion giggling.
Finally in the month of January 2018, both myself and my husband reached to a mutual understanding and agreement. Where Patrick is concerned, we don't regret having him in our lives. That we recognise that this will be a very challenging journey for us as parents. That we recognise possibility of death. And this...the most difficult decision we both made and agreed upon - to accept that if things goes wrong suddenly, his death can happen. To accept his death if it happens.
With that, dark clouds cleared from our minds, hearts and bodies. Because we accepted all possibilities, fear no longer held us imprisoned.
To help Patrick is to have a clear and calm mind. Fears only lead to speculation, over - imagination and anticipation of an outcome that may not happen at all. Chances of mistakes would happen that may cause the worsening of Patrick's condition. One of the worse case scenario would be his suffering intensified because of our poor judgment in decision making on his medical need. Worst of them all would be death. I would never forgive myself if I have made such mistakes upon such a basis.
With a renewed focus, I started focusing deeply onto my meditative practice to have a clearer and calmer mind. It especially helps a lot when I lack sleep. On average, I would have 2 to 3 hours of sleep due to breastfeeding.
We do not know what the future may bring. One focus for certain, I want to lessen my son's suffering. Suffering would be inevitable and part of his journey. How he disliked being poked by the doctors, of blood extraction process. He still has the memory of the painful KASAI on his body. If Patrick needs to go for a liver transplant, we would do all it takes to save his life.
Patrick, you can count on us. We would not fail you. We will not. We will become your shining sun.
This is sun halo captured by my mobile. To me this represented we are the sun for Patrick
Note: Today is 20 December 2018. At almost 2.30am, I just received news from the support group that a seven months old baby died. The baby was admitted to the hospital recently because of a sudden fever and rapid breathing. Blood pressure became lower. Blood transfusion was given. The kidneys were affected as well. The baby slowly became non responsive due to lacking oxygen to the brain. Biliary atresia babies tend to have a weaken immune system. Condolences to the mother and family. Patrick is sitting in front of me , fidgeting. At first I kept telling him not to fidget because interfering with my writing. I will be holding him closely to my body, hugging and kissing him. Thankful he is still here with me now.
On a journey of uncertainty, confusion, chaos and emotional turbulence, that is when we turn to Faith. Some lost Faith when they did not get the answers they wanted or what they prayed for did not manifest. Some Faiths however strengthen despite the journey appearing more unknown and uncertain. To me, Faith is a personal journey. No one can tell you what you should do with your Faith. It's yours alone and not for others to dictate what it should be to their understanding. To their belief system. To their comfort zone. For God would show the ever faithful His Answer, His Direction. His Guidance. I remembered my Faith was weakened in the month of April 2018. Patrick's jaundice did not appear to be growing any better. In fact, it was steadily increasing in bilirubin. My mother questioned on why is he not getting any better. Sometimes I do not know how to answer her. How could I give her a definite answer when the doctors could not? On average, I had been sleeping 3 hours nightly bec…
The birth of Patrick changed my marriage life from the two of us to the three of us, a family. We were excited, happy, worried followed by all kind of emotions for our baby son. So many things to learn, to experience. Breastfeeding, constant thoughts on our baby's well being especially when his jaundice appeared to rise during his first month. The lacking of sleep. There were moments I observed his breathing while he slept. We were amazed by every new mannerisms that Patrick displayed. We were so charmed when he first smiled to us. I would observed how gently my husband would treat Patrick and how Patrick would looked up to him, listening to his every word.
We were enjoying ourselves as new parents until something happened in the middle of November 2017 that changed our lives forever. "There is something not right with his stools."
My sister in law remarked to me while I tiredly changed Patrick's diapers. Mentally I can be exhausted as new mothers would be. We visited my s…
When I saw Patrick's stained fingers, I observed closely it was blood. I assumed the stain came from his ears again. I observed - no wound. I checked on his arms and legs. No wounds as well. I was puzzled where the stain came from. Then I had a sudden thought - check his diapers. When I saw the bloodstain on the diapers, I panicked and called my husband to come upstairs quickly. When he reached the room, I told him Patrick is bleeding. "where?", he asked "Anus." I pointed to his diapers and then his anus stained blood. It had never happened like this before. Usually there were droplets of blood together with his stools. Even that rarely happened. "Is it starting?", my worried thoughts came. When I glanced towards my husband's face, he too have similar thoughts. "It" refer to liver damage. My husband advised me to clean up his anus. After the blood stain was cleaned, my husband took a closer look. "There is a cut near the anus hole." …