One Year Passed

One year almost ending, another year coming. We have gone through a lot together as a family. Our perception of life, humanity and love has changed so much. I credit this to Patrick's presence in our lives.

As I am writing now, Patrick tried to attract my attention by sudden chuckles. I will stop writing, hold him and kiss him. Exactly a year ago, I tried hard to make him smile and laugh.

Today, he takes initiatives to make us smile and laugh. 

On this journey I met courageous and amazing people whom inspired me, supported me, strengthen me. I have strong support from my parents and brother when comes to Patrick's well being. My in-laws have given their support in their own way as well. 

The closest and greatest support would be my husband. He has tirelessly taken care of us even when he is exhausted from work. He would encourage me when my emotions became affected. I am blessed I have a good husband and a good dad to Patrick. For with his presence made our lives complete and loving.

I find the most courageous love is not just willing to love. It's willing to love, willing to give their hearts fully despite the possibilities of getting hurt, of knowing the possibility of losing their loved ones. 

One good example is my mother. I always underestimated her. There were moments I did not expect she would show her strength yet she always step up. My mother has always been afraid to get hurt yet willing to open her heart fully to Patrick. She admitted to me when she thinks of Patrick, there are moments tears come to her eyes. I assured my mother that we will do all we can to help Patrick and not to worry too much of something that we have no control over. 

To focus on Positivity and on Hope. Not on negative thoughts. Not on complaints of how unfair people are to us, of their lacking of empathy or sympathy. Not focus on why Patrick has such bad luck. Not focus on God why He did not heal Patrick completely. Because all these venting, complaining are tiring, finger pointing, destructive and only added onto emotional turbulence that sees no solution and resolution. 

Having a chaotic mind was like howling winds where you cannot hear your inner voice.  Fears and anxiousness shall entrap us within, only suggests to us dead ends, locked doors and no resolutions. When our minds are more free by calmness and clarity,  when our hearts are more stable, only then can we see clearly the best possible routes to help Patrick. 

supporting Patrick

I learnt through Patrick to be ever patient especially when he can be truly hyper in activeness. It can be especially challenging during moments when I am exhausted and my body yearned to sleep. Yet Patrick can still be wide awake, fussing and crying. There were moments I am not proud to admit, my irritation rose, and I would ask him, "why are you crying??"

Yet within seconds a thought dropped into my mind - "He cannot help himself."

Then my irritation disappeared within seconds. I picked him up and rocked him in my arms. Sometimes I would sing the 'calm, calm' song which I created for him. 

The test of Patience have been incredibly high for myself and my husband. For there were moments this year, I truly thought would be the year Patrick may need to go for a liver transplant. Because he would suddenly developed newer symptoms like bleeding in the nose ( which we and the doctor concluded it was due to the nasogastric tube that caused abrasions to the nostrils).  

Then there were occasional bleeding in the stools, however based upon inspection, it appeared to be mostly due to abrasions to the anus opening area. If the blood looked black together with the poo, we should be more worried for that meant internal bleeding in the intestines. So far, the blood appeared to be red. Recently this month, he vomited blood. Oh, how I was on edge. 

Dr Ng advised to observe closely. If Patrick's next vomit have blood once more, he need to be admitted to the hospital for monitoring. Thankfully, no additional episodes. Dr Ng did prepare me that if Patrick have portal hypertension, the amount of blood expelled from his body, whether nose, vomit or stools, would be a huge volume due to swollen blood vessels. Judging the amount that came out, do not appeared to be that severe. So, best not to jump into conclusions and patiently observe in order to know the next best step for Patrick.

Dr Ng has prepared us by next year we shall know by the blood test the state of his liver function. If Patrick is not getting any better, or the results revealed further deterioration, maybe it's time to consider seriously to plan for a liver transplant. It would be best to do it when he is healthy, so to speak. And not when the liver starting to fail severely, which put his life at risk. If the blood test results reveal his liver functioning is on the recovery, then Patrick still continues to be monitored closely. 

And so, we shall wait until 2019 in order to know the eventual fate of Patrick.  We cannot speculate. We cannot worry too much. All we can do is patiently wait. 

Patrick relying on me for emotional support and encouragement

No matter how our journey would be later, no matter how the destination would be, I have no regrets loving you, Patrick. To have you in my life. It had been an amazing journey of Love and you made me realised what is more important in life. To focus on Goodness, Positivity and Humanity. 

After dinner earlier, we brought Patrick to the nearby stalls.  His eyes suddenly fixated on the rows of hanging dolls. We noticed, and we stopped his stroller next to that stall. We kept asking him, which one does he like. How his eyes roamed on such delights. In the end he chose a toy based on this:-

Incredible boy from The Incredibles family.

For me, I do not know what 2019 shall bring for Patrick. Maybe he is trying to tell us something by what he picked as his own gift. I wish for an incredible year of Hope, Faith, Courage, Love, Strength, Resilience and Humanity. 

Within minutes, 2019 would be coming. Wishing you an incredible year of Possibilities in Personal Growths, in harmonious Family relationships, Good Health, in Hope, in Love and Goodness in your life.

Happy New Year!