Friday, 6 May 2016

The Stars Still Shine

Felix and his doll (who also has Down syndrome)
I'm still not feeling able to write that much after the sadness of this week. I have tried to write another blog but my mind is a bit jumbled and all over the place but, I did think of one really beautiful little moment with Felix, yesterday, that I would like to share.

It was that time of night when, after a day at work, you look in the fridge and think, "What can I cook for dinner?" The uninspiring contents of my fridge stared back at me so, I decided to bundle Felix up into the car, and go to the supermarket for more inspiration. It was still daylight when we arrived at the shop.

"Wearing" the little guy
Felix, as per usual, made a short trip to the shop slightly longer than necessary. In the trolley. Out of the trolley. Running up the aisle. Choosing things from the shelf and putting them in the trolley. Me, placing said items back on the shelf. Helping to put the shopping on to the check out. Finding the ride on car and sitting in it. Wanting to unlock the car himself. Escaping my clutches and climbing over the seat into the front. Me, wrestling him back into his car seat and strapping him in. You get the picture? Lucky he's cute!

Climbing a tree before school this morning
When we got home, it was dark. I was tired and in a hurry to make dinner and get it over with. Felix, being the chilled out little guy that he is, wasn't in a rush at all. He got out of the car, gazed at the sky and said, "Sun all gone!" I stopped, realising this was one of those moments when Felix was reminding me to slow down, and replied, "Yes Felix. The sun has gone to sleep now. Can you see the moon?" We both stood on the front lawn looking up but couldn't find the moon. Felix pointed and said, "Stars!" I nodded and mumbled something about there being lots of stars, and started to move towards the house with my shopping bags. When I got to the front porch I turned around and saw that Felix hadn't moved. He was still craning his neck; his face looking up to the sky.

The next moment was so beautiful. He started to sing Twinkle, Twinkle Little Star. He didn't look at me. He kept his eyes on the stars. The most special bit for me was that he spoke the words in the song more clearly than ever before, and didn't stop gazing up until the whole song was finished. It melted my heart to watch him and, all the stress I was feeling up until that point, disappeared. As usual, the little guy worked his magic and filled my heart. He always knows just what I need!

Wednesday, 4 May 2016

Fly High Little One

The newest little star in the sky!
In my last blog, I posted about how fragile our little ones, with Down syndrome, can be. Sadly, only a few days later, on May 2, heaven gained another angel. Little Nicholas was 4 years old. He was full of life, full of energy, and so unbelievably loved by his family, and everyone who knew him. The Down syndrome community, here in Australia,  is a tight knit one and, I was blessed to become friends with Nicholas's Mum several years ago, through Facebook, and have followed her beautifully written blog for a very long time I have enjoyed watching Nicholas grow and learn, through photos, and have loved reading his Mum's warm, heartfelt stories of the family she loves so much. Only three weeks ago, I told her to enjoy the extra cuddles she was getting while Nicholas was unwell. No-one would have guessed just how sick he actually was. Now we, as a community, are united in our grief for his family, but our grief doesn't even come close to what his family are going through right now. Fly high little man x x x

I have felt so many mixed emotions this week. I have felt so much sadness and cried many tears. I have felt angry that a precious little man was taken from such a beautiful family. I have felt joy as I've watched Felix play, and I've laughed at the funny things he's said and done. I've also been frightened about his health. To be honest, I have been terrified about it. Nicholas, like Felix, had always been really healthy. None of us are promised a tomorrow, so it's another reminder to live each day fully and love deeply.  More than anything this week, I have held Felix tighter than I have in a very long time.
Nicholas's rainbow

Yesterday, as I was driving home from work, I saw a huge rainbow in the sky. The longer I drove, the bigger it got until I could see the whole arc from one side to the other. I stopped the car several times to take photos of it. Some of you might remember my rainbow story. After we were told, at the hospital, that Felix probably wouldn't survive, and was likely to pass away in the womb from issues with his brain, we saw a rainbow on the way home that day. Every fortnight, after that, as we drove 200km to the hospital for appointments, we saw another one. Seeing the rainbow brought me a peace that Felix was going to be OK. Ever since then, a rainbow makes me think of Felix. After a radio interview I did, a few years back, they played the song "Somewhere Over the Rainbow". When Felix graduated from kindy last year, what song came on as his face appeared on the power point presentation? Yep...."Somewhere Over the Rainbow".

Yesterday, when I saw the rainbow my thoughts went straight to Nicholas. When I saw that enormous, colourful arc, bursting through the clouds, I could see his sweet little face in my mind; his bright blue eyes and the blondest hair you've ever seen. It was just like he was reminding us that he's still around. I cried as I drove; tears for his family, tears for the unfairness that his body is no longer here, but thankful for the reminder that he lives on in our hearts. Sleep sweetly Nicholas x