Starlight Star Bright

Being that today is Starlight Day I thought I'd share our experience and encourage people to give a little.

Starlight help to brighten the lives of seriously sick kids and their families, at a time when illness, hospitals and intensely difficult situations have become the norm.

Although we wished differently everyday, we knew in our hearts that our son Noah would never be "well". We also had to come to terms with the fact that we probably wouldn't have him with us for long. After that our wishes for our son became simpler. We just wanted him to smile and to know that he was loved. We also wanted to make memories that didn't revolve around medical machines, tubes, therapy and pain.

When we received a call from Starlight letting us know Noah was going to receive a wish we were so excited. We started planning a family holiday to the Gold Coast. Where Noah could swim with the dolphins, visit the theme parks and meet his favorite character, Elmo.

It gave us something to plan and look forward to. Something about the future we could smile about. Our trip was booked for the end of October.

Six weeks before we were due to set off Noah passed away.

A little while after I received a call from Starlight. They had heard of Noah's passing and wanted to pass on their condolences. They also wanted to let us know there was one more special gift in store for us.

A star named Noah.

How perfect a star. Shining on brightly like the memories we will always have and the lessons we will forever keep.

Now when I look up at the night sky at Noah's star (near the Southern Cross) I smile and sometimes make wishes. And today on Starlight Day I wish for all the other families to have the chance to receive their wishes and to see their little stars smiling.

Beyond Words

Well it sure has been a while between blog posts. Firstly I want to extend my virtual arms and give everyone a huge thank you hug. The support, compassion and thoughtfulness we have received from our family, friends and people all around the world has been truly beyond words.

 I have been keeping myself  "busy", but at the same time have felt so completely motionless. For a while I felt like I had fallen into a bucket of slow drying cement and slowly the days were getting harder and harder. The relentless force of time has been knocking at my door, urging me to do what I know I must... go on with life... life without Noah.

The truth is when Noah was here I felt an inner strength. Like I would, and could, accomplish anything. I had gained a confidence about me. I could speak up, speak out and although I hoped sharing our journey could help and inspire others ....I wasn't frightened about letting the words just spill out. When Noah died I knew what I had to do. Our story, that I had began sharing, was unfinished. There were so many things left unsaid. Experiences unshared. Emotions left unreconciled. Things that I felt could bring sunshine to others who might find themselves in the dark places, places I had visited and still frequented often. Things that could also transcend our circumstances and speak to people going about their daily walk in life.

But in the wake of losing Noah I had lost a little bit of that inner strength. I became doubtful that I could somehow even try to share the profound life changing experience we have had. But then I read a blog of a lady just like me. A fellow HIE mum who had lost her beautiful son Leroy. Her blog was titled No Words. She spoke about being lost for words and having none to really express what she was feeling. Her words were so simple yet so exactly what I needed to hear at that exact time. It showed me how powerful one persons true words can be.

And so now I am ready to share...

Starting with a poem that I came across called  He Is Gone by David Harkins. These words bring me great comfort and strength as I walk through the door of tomorrow.