Hectic Week

After a good long CNY break, it was back to the routine hospital trips. There were 5 appointments in first two weeks of February and an additional two end of the month.

Anyway, I absolutely dreaded these trips. There is always a high risk of Caelen catching something either from the train rides (plenty of peeps who refused to don a mask when sick) or from the hospital where all kinds of bugs and viruses lurk. Home is still the safest.

Well, this was Caelen during a mask-fitting session at KKH earlier, in preparation for his sleep test on the 28th as well as for the BIPAP machine which he'd be using at home very soon. I need not elaborate but it was not a pleasant experience for both of us. Endless crying and screaming was all I remembered.



Trying on a Mini Me

On a happier note, a few things to anticipate this week:

We will be celebrating "Rare Disease Day 2014" with other special families on 1st Mar at Furama City Centre Hotel, an event jointly organised by Club Rainbow (Singapore) and Rare Disorders Society (Singapore). This is open to public so please do support.

We will also be celebrating Caelen's 1st birthday on the 2nd Mar!! It's yet another milestone for my baby boy. How can we not put up the best for him? So here I am, working really hard to put things together and honestly, it's tough juggling work, family, babysitting, chores, hospital trips and organising an event. Hoping it will turn out just fine.

Before I go, here's another pic of my little one with his 3rd pearlie on the way. Better late than never! It's about time he grows some teeth. Cheers!

无私的爱

这是我心里的一些挣扎与无奈，对儿子闻越的那份爱。
我相信这也是一些特别儿童爸爸妈妈对孩子们伟大的爱。
 

“在你害怕失措时，妈妈会轻声说道安抚你的呼叫。
  在你痛楚落泪时，妈妈会忍住悲痛给你最温馨的微笑。
  在你彷徨无助时，妈妈会握紧你的手陪你坚强的走。
  在你意志消沉时，妈妈会在旁激励昼夜守候。

  你的一举手一投足，可能妈妈盼不到
  你的深呼吸你的眨眨眼，对妈妈最重要。
  你的呵呵笑你把妈妈叫，可能我再也听不到
  你别担心，我不会忘掉，宝贵回忆已深深在心里烙。
  我要你知道，前面的路好与不好，妈妈对你的爱有增无少。”

向许多爸爸妈妈致敬。辛苦啦！

A New Year, A Different Light

Year of the Horse has been good so far.

The Good:

• The annoying flu which bugged the family went away after stringent measures taken.
• Caelen has included "papa" and "mama" in his world of babbling.
• He recognises his favourite songs. Will laugh and clap along when these are played.
• He discovered the wonders of bubbles and tries poking them with his fingers during tub time.

The Bad:

• His phlegm is building up and been coughing more after his milk feed.
• He sweats profusely when sitting up during playtime.
• He drools more.

While Caelen gets to spend his first Lunar New Year with family and relatives. I, on the other hand, gained precious bonding time. This is the first time I looked at him and at things in a different light. And I came to learn that:

• He whom I turned away from never left me.
• He who fills my life with sadness and misery for many different reasons also fills my life with so much joy and love.
• He gave little signs and subtle hints along the way to help me comprehend that things happen for a reason. Some are destined to be and we just need to go with the flow.
• He made me see the silver lining when I am at my lowest. He let friends and sometimes strangers into my life at different juncture when I most needed help and support.
• I can't ask for a miracle if I don't believe in Him.

This boy is our little angel. Sent to us with a purpose. Here to accomplish greater things. There are more to life than money and career. Please do not lose sight of what is important in life. You cannot backtrack and make up for lost time. Caelen has changed my life completely and I hope he can change others' too.

 

Tomorrow is an important day. We will be meeting some new friends from RDSS to understand how families cope with SMA. It's our first baby step forward! It will be a fruitful meet. Can't wait.

 

 

P.S. I would like to express my heartfelt thanks to friends and anonymous kind souls who contributed to Caelen's CDA. Thank you and God bless.