Christmas Meanderings

Can you believe we almost got accepted for Channel 9’s “Renno Rumble TV show in 2016”, by the same producers of “The Block”! Some kind soul had nominated our family, Channel 9 were seeking families with children of cerebral palsy/special needs to create a “family dream home”! They came to our home to take photo’s, interview us on camera and then we were told to wait to hear back. We were pretty excited about the potential, and adaptability for Chiara, alas we recently found out we were  not the lucky few who got in. But knowing that some other families with special needs children were chosen makes us feel happy, there are so many families out there who need help. I can’t wait to see who got in and see families homes transform.

So that bring’s us to Christmas.

Christmas Eve was upon us and instead of driving to the Roberts family home of 30 + years, we were on route Mum and Dad’s new abode. As soon as we stepped foot into the house we instantly felt relaxed, the smell of sea air, the fresh open spaces and the Japanese garden felt like a tranquil welcome.
So what did we do Christmas eve? Head straight to the beach of course, half moon bay to watch the golden sunset and the luminous (full) moon rise. At one point I caught myself letting out one massive releasing sigh, what a year!
Christmas Day we woke up and celebrated with the Roberts crew, then lunchtime drove 2 minutes to Mauros’ uncles home for The Mazzeo Christmas Day lunch. We had such an awesome day and wrapped it up with a swim at sunset. I forgot how much fun bayside is, so much life happening.
Melbourne’s bayside was my home for many years before I met Mauro. After work I would religiously jump on my bike (music on my iPod) and ride for hours along the beach or catching up with local friends. For a Piscean woman, the sea is a soothing balm, a place of space, rejuvenation and a beautiful reminder of the ever-changing flow of life. The patterns across the water change with the tides, the winds, the moon. The bay can be as tranquil and as still as glass, as quickly as it can turn choppy and unpredictable. The sun sets across the ocean every single day awaiting for a new day to be born. And so this cycle goes, on and on and on.
Screen Shot 2015-12-29 at 7.30.55 am
So what are our plans for 2016?
MIRACLES of course! As well as moving home.
After our recent home assessment from the Early Intervention Team, regarding the adaptability of our  home to cope with Chiara’s disability as she grows older, it’s apparent that it’s time to move. A ramp into our front door would not be possible, due to the safety requirements, leaving only an option for a lift to get Chiara into and out of the home. Then there’s a few other issues with getting her around the house, into the bathroom/toilet/shower. The new Flamingo Shower and Toilet seat doesn’t quite fit into either of these spaces.
bathing / toilet
As much as Mauro and I have tried to avoid using this sort of equipment for as long as possible, it’s now unavoidable. The daily repetition of meeting Chiara’s physical need’s are already taking their toll. Mauro has injured his shoulder and I’ve been on the wait list for almost 3 years for a hernia operation (not supposed to be lifting!!). This is where Early Intervention at Noah’s Ark have been so valuable, they have been in the industry for many years and know what lies ahead of us, in terms of special needs equipment, adaptability and physiotherapy care for us as her parents. Planning ahead is key. Mauro and I have never walked this road, we have no idea what lies ahead in this world of disability.
The Early Intervention team have ordered three additional pieces of equipment for Chiara. The toilet/shower seat pictured above, a new standing frame with lateral supports, as well as another Bingo seat (how’s the name’s of these things!!). We already have a seat that we keep on her pram base (that we could of inter-changed with the indoor base) however it weighs over 20kg, and with our current home set-up, they thought it wasn’t practical or safe to keep inter-changing & issues with OH&S. So now, one seat will remain permanently on the indoor base and the other on the pram base. yay!! The equipment was ordered a long time ago, and we are still waiting got them to arrive, but that’s how life roll’s in the special needs funding world. Things can take 12 months before they arrive, which is a shame given correct postural support is paramount with these kids. We are grateful regardless that we are able to get support with funding for some of this expensive equipment. Hopefully NDIS will make a huge impact for all families in need.
Bingo Chair
I still get a huge lump in my throat that this is really happening, I sometimes think that I’ll wake up to find it was all just a dream, and that Chiara can walk, move and communicate freely. No matter how much acceptance we practice, our hearts will always break a little watching our little girl be confined to these steel contraptions. So I guess that is why, we will continue to offer opportunities for Chiara to reach her highest possible potential.
2016 is all about simplicity, ease, space, love and miracles abound.
take me to the sea

Categories: Cerebral Palsy

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