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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.
Last week, I
visited a friend who is suffering from Neurofibromatosis type 2 (NF2), a hereditary condition that causes her body to produce multiple tumours
throughout her life. Link to Yvonne's blog .
Photo was taken from her Facebook She
was supposed to go to the United States of America in May 2018 for a
cervical spine surgery. Unfortunately, before the trip, she fell on
her back and hit her head. She had to undergo a critical brain surgery instead
in Kuala Lumpur. The money she collected for the surgery in USA was all spent
on the brain surgery.
When I saw her,
the first thing I noticed was the protruding feeding tube at her stomach. Food
had to be
inserted through the feeding tube. Yvonne is deaf and blind. She is still bedridden and immobile as
a result of the fall she had in May 2018.
with Yvonne, I had to write an alphabet at a time, slowly on her palm. If she
doesn’t get the word, it must be
written all over again. It is best to use few simple w…
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…
We could not believe how fast the funds came in after we uploaded our video appealing for funds to Patrick's liver transplant surgery fees.
I admitted that money was one big worry for without it, the surgery would not proceed. Once HOC set up the appeal on our behalf, I prayed. I prayed hard to God.
Suddenly a thought came. A video of us as a family, making a plea to friends, family and public. To save Patrick by donating to his surgery fees.
So, we quickly set it into motion on 22 May 2019.
I could not imagine the responses came beyond Malaysia - Australia, Singapore and more. From people whom I had not talked to for a few years, willingly came forward to donate, send a kind word, prayers and spread the video to their friends.
Before we go forward to the public, another worry I had was my mother. She has anxiety over Patrick. There were times I had to calm her down, assure her everything shall be fine when I admit I do not actually know whether it is so. I don't wish for my mu…