It was last January (2011) when I was in the middle of my busy working day, when a segment on The View came on television. (Yes, I worked with the tv on. No, it didn’t distract me 99% of the time!). A gorgeous little girl and her loving parents were on to discuss a condition called Rett Syndrome. At this time, we had not begun any sort of investigation into why Jovie was ‘behind’ and had never heard of Rett Syndrome before. The Gutierrez family and Anna had me transfixed and what they were saying set off alarms in me.
Here is that segment –
Yesterday, Anna Gutierrez passed away. She was 4 years old.
I am FOREVER grateful for the Gutierrez family, for Anna and for The View for spreading the awareness of Rett Syndrome. Without that 10 minute segment, I would not have looked into it myself and would of been in the dark about this condition for months and months. I wouldn’t of had the balls to bring it up in our first paediatrician’s appointment, and wouldn’t have the guts to face reality so early on in our journey.
Many girls will pass away from Rett Syndrome and it never gets any easier.
To say we need to find a cure is a given, and I’m hopeful that they will find a cure. In the meantime, I will carry the Rett Syndrome Awareness torch for as long as I can, and hope that these girls are never forgotten.
Jovie doesn’t laugh alot – smile, yes – but there’s not alot of laughter out of her, and certainly not alot of ‘play’ and joint play.
Tonight was an exception …
She was very giggly throughout dinner and it continued while I was washing up so I whipped out my phone and filmed a bit.
I can’t tell you how nice it is to see her interact this way, she doesn’t play because she doesn’t know how. But this? She can do it seems. And I love it.
I’ve been so tired & sore lately – not sure what it is but it reminds me of a couple of months ago when I was struck down with that horrid flu. Yuck.
For the last 6 weeks or so, I’ve been very good with my eating & exercising – YES, ME. They said that if you do something every day for 21 days it becomes a habit, and I’m really glad my habit is jumping on the elliptical and then doing some strength training ‘for fun’. Maybe my body has been telling me to rest this week?
Food wise, it’s a tougher road. I’m great with breakfast and snacks, but come lunch & dinner & dessert – it’s an uphill battle to say no to the deliciousness of carbs & chocolate. I definately treat myself now and then, because who wants to live in a world where there’s no chocolate, but learning how to stop after one piece is tricky tricky business.
While I was sick with pneumonia, I had to take a probiotic so that my stomach wouldn’t implode out of sadness. I still like taking a probiotic now and then, so having it available in juice now is amazing.
Yum – spelt flakes, yoghurt and berries, with a bottle of Healthy Life probiotic juice nearby.
Having tried probiotics in powder form, and in those tiny milk bottles – the probiotic juice is by far my favourite choice. The juice tastes like juice and there’s no added sugar. Jasper’s had a few mini cups and he loves it – which is great for when his stomach is running afoul too. You can find the Healthy Life probiotic juice in the cold juice section at any major supermarket in NSW, QLD and VIC.
I normally don’t like to review stuff here on my personal blog (I leave it for the ABB), but this product was something I would recommend any of my friends if they were on antibiotics, were rundown or having a hard time in the toilet department. Because, you know, it happens.
So I’ll try and ride out the rest of the week (it’s only Monday, Tracey!) to see whether this tiredness lifts, but at least I know I’m drinking something that’ll help my battling immune system 🙂
