13 March 2017

These past few days, the whole world, as I would like to think so, has fallen in love with my Thomas and William.

I shared that photo of them on the couch because that was pure love and I wanted to immortalise that moment for my personal collection and don't you think the world (through social media) needs a little dose of pure love here and there?

Since then, I've received countless messages of love and compassion for my Thomas and admiration for my William.

The primary nature of the messages is sympathy and comes close second is gratitude. People tell me how thankful they are for my boys, for sharing Thomas' story, for teaching them what's important in life and for reminding them to love more and complain less.

I told in an interview today that one of the reasons why I started sharing Thomas' journey was to get prayers from friends and family. To gain my prayer warriors to help me pray for him. And to know now that the whole world is praying for Thomas (or thinking about him) is just beyond amazing.

My boys have changed my life and it seems like they are also changing others in their own little ways. I am so damn proud of them.

To everyone who sent us heartwarming messages, thank you from the bottom of my heart. I draw strength from from all of it, especially when you say my family is not alone. It just blows my mind.

Thank you!

I hope you are all having a lovely day and I'll speak to you soon!


Edit: We are hoping that Thomas' story will raise more awareness on Malignant Rhabdoid Tumours. The disease is so rare there's not enough research about it to help find a cure. 

Also, I'm trying to get Ed Sheeran's attention. We couldn't think of a song for Thomas and all I can think of is Ed Sheeran and if he is willing to write a melody or a song for Baby Thomas. Here's hoping social media works.


04 March 2017

The irony of life has hit my family so hard and everything doesn't make sense anymore. It feels like only yesterday when I posted about giving birth to our Rainbow Baby Thomas and here I am writing about his imminent death.

His death.

Can you even get your head wrapped around that concept?  I can't.

I can't even begin to describe the pain I feel each time I look at his precious face. My heart breaks for every big smile he gives me because I know how much I will miss it when it's all gone, and when you think my heart can't take it anymore, it shatters even more when he gives his begging look when he's in pain.

Our good days usually start in a panic trying to keep his pain under control especially when he sleeps through the night.  Do I wake him knowing it will upset him and trigger his pain? Or do I wait until he wakes up when his pain is triggered? 

On a bad day, he screams awake frequently leaving him with little to no decent sleep.
How am I coping? How is my husband coping? We honestly don't know.

I wake up wishing it's all just a bad dream and then I look at Thomas and I know it's all real. I start to cry.

I go to bed scared and I beg for the night NOT to be our last.

And then a new day comes and I find him snuggled next to me, breathing, warm, sometimes half smiling in his sleep and I thank God for another day with him. Often times, the hysterical crying comes out instead of a sigh of relief. 

Right now as I write this post, our Thomas is still here with us and that's what really matters. Each day is embraced and each week is celebrated.

Watching my two sons together is a dream come true. Being a family of four has always been part of my day dreams. It's now my reality and it's trapped in this nightmare no family should be in. 

I am in desolation with no end on sight. My heart will forever ache for my Thomas and my soul will forever long for him. 

I am sad for my big boy William, he's only getting to know him.

Our Thomas has been diagnosed with Malignant Rhabdoid Tumour at 11 weeks old. He's now 13 weeks old (almost 14 weeks) and still fighting. 
We've been inundated with a lot of love and support all over the world and we thank you all for your prayers, positive vibes, thoughts and generosity. We are forever grateful.