Goodbye to the Bay

Today we left the bay to head home. Our friends are moving soon so I’m not sure when we will come back again. We’ve been friends for such a long time now. They are god parents to our kids and have been with us through the best and the worst times of our lives and I treasure their friendship dearly. It’s a true sign of friendship when you can spend long periods of time apart but when you see each other you just pick up where you left off. It was very sad to say goodbye but we’ve had a wonderful relaxing time. Now for the long trip home!

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Just Us & The Great Blue Beyond

This afternoon we made our last trip over to Monkey Mia. Like a couple of well laden pack horses we made our way along the northern stretch of beach with children, eskies, fishing rods and towels in our arms. It was so worth the trek. We had the beach entirely to ourselves the majority of the time we were there and as the tide went out it revealed a sand bar winding out into the ocean, like a magic pathway filled with shallow pools.

As the children played in the warm shallows we heard the sound of dolphins and there was a pod of six dolphins about five meters away from us. Pure magic! Fish were leaping from the water and we even got to see a sting ray and a Dugong. My one and only attempt at fishing saw me catch a shark (just a baby) and I was quite happy when he released himself from my line. He was very obliging and hung around for a photo.

As the afternoon grew late the ocean blended with the sky and it was hard to see the horizon. It was one of those perfect moments in life. Calm, quiet and just us and our babies enjoying this amazing part of the world. It was such a gift!

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Beach Days

We are loving our break from the frantic pace of normal life. Everyday involves taking the children to the playground and the beach and then spending time with our friends in the evening.

This region is so remote that and so breathtakingly beautiful. I wish that my photos could do better justice to the colours here. Our emu friends were on the road again today, completely unconcerned by our presence. We watched the dolphins playing and the baby tried her hand at fishing. The girls and I collected shells but made sure we left them behind for the next person to enjoy too.

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Monkey Mia Magic

Today we went to beautiful Monkey Mia. There is something magical and healing about this place. We got married here, returned here to heal after the Bali Bombing and it has always been one of those places where, no matter how stressed you are, you can’t help but unwind.

The wild dolphins come into shore here to interact with people. This year my favorite dolphin has a new baby with her. She swam with me when I was pregnant with the twins so it is very special to meet her baby. The sea here is the most brilliant turquoise you can imagine and when the sun catches it it looks like a million little fairy lights are twinkling away. The cliffs are red and contrast is stunning.

The baby has enjoyed her freedom toddling along in the shallows and was very intrigued by the little waves that lapped at her toes. The discovery of a starfish added to the wonder (we did put it back in the water!). On the drive home we encountered some more wild friends by the side of the road – another family enjoying this amazing place.

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The Long and Winding Road

We are taking a break as a family, well half the family, as the older three no longer see family holidays as a desirable option – imagine having to be away from your friends (insert mock gasp of horror). We have taken the younger three to visit their god parents who live 10 hours away in northern western Australia. They live in a place called Shark Bay which is 15 mins away from an even more amazing place called Monkey Mia.

Monkey Mia is a place where wild dolphins come into shore and interact with people. To protect the dolphins they have set feeding times now but the dolphins will often come close when you’re swimming at the beach. When I was pregnant with the twins there was a dolphin called Nicky who came and swam next to me. Apparently she likes pregnant ladies. It was a magical moment that I have never forgotten.

The last couple of weeks have been so stressful – preparing for Ashley’s operation and trying to raise the money needed. Thanks to the wonderful generosity of the people of Perth we have now raised enough money for the first trip to Melbourne and the operation, but we are exhausted, both mentally and physically, so a trip away to a sleepy seaside town is just what the doctor ordered.

The last part of the drive up here is through very barren, monotonous, scrubby bush but there was the most amazing sunset, unfortunately the pictures don’t do it justice. Then comes darkness. Out here there are no man-made lights at all, just inky, velvet blackness punctuated only by the cars head lights and the myriad of stars. You really can’t appreciated how many stars there actually are until you see them in the context of total black out. They are spectacular.

Finally we are here, stiff from the long drive but safe and happy to see our dear friends. Time to give our little girl a last chance at enjoying the freedom of being a kid, enjoying the fresh air and beaches before we swap them for hospitals and a long rehab. Thank god for a sanctuary like this.

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Making Memories

With Ashley’s surgery coming up soon we’re trying to fit in as many outings as we can as we are going to be housebound for the next year.

We took the younger three children out to York, one of the oldest country towns in Western Australia. Its funny how there can be so many things literally on your doorstep but you don’t bother to go and see them. At the moment we are focussing on making happy memories for Ashley to look back on while she undergoes rehab.

York is just over an hour away from where we live and it’s a pretty drive. It’s a beautiful little town but sadly we noticed a lot of properties for sale including all three pubs, which is never a good sign.

Lunch was courtesy of the town bakery and after we had a walk around we drove up to the lookout. There is a short walk/climb once you park your car and Ashley’s legs were hurting so I carried her – good practice for what’s to come. When we got up there it was very windy (and chilly) but the girls were entranced with the view.

Afterwards we went to the residency museum. It cost us $10 for the whole family and was one of the best museums we have ever been to. There was so much for the kids to do. Dress-ups, trying their hand at old machinery, playing croquet just to name a few.

It was a lovely day and on the way home we had three sleeping beauties in the back of the car – worn out from all their adventures.

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Art Therapy

I started my collection of art & craft supplies for Ashley today. She loves any art activity and I’m going to have to have things on hand to keep her amused during her 12 months of rehab.

One of my friends has told me that they have an art therapist at the Royal Melbourne Children’s Hospital where she will be having her surgery. I hope she is well enough to use this service as I think she will love it.

I found a great product today which is special paper with an adhesive backing. You can print your own photos on to it and make your own stickers. I’m going to do some as a surprise for her of all her family and friends so she can put them into her artworks.

This is a photo of Ashley and her twin Carys with a picture they painted recently.

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The Generosity of Strangers

I haven’t written for the last couple of weeks because once again my world has been turned upside down. We got the results back from the recent round of testing that Ashley underwent (see what’s in a walk). The results not only took me by surprise but her medical team also.

We had been expecting that Ashley would need surgery soon but all of us thought it would be soft-tissue, muscles and tendons. However we have now found out that she needs multi-level surgery ASAP if she is going to be able to continue to walk.

Multi- level surgery involves procedures on the bones as well as the soft tissues. It’s a lot more involved and the recovery and rehabilitation needed will be a lot more extensive. In simple terms they will break her legs, the right one in multiple places, and cut the muscles and tendons to extend them and release some of the spasticity.

As an added complication there is a suspicion that she has underlying dystonia (a condition where the limb moves uncontrollably) that is only being held in check by the strength of the spasticity (tightness of the muscles). There is no way we can confirm this. It means that when the surgery is done they need to be careful exactly how much spasticity they release. Too little and her thigh bones will twist and deform and she will lose the use of her hips, knee and ankle. Too much and she will be left with a limb that moves uncontrollably leaving her dependent on a wheelchair – no longer able to walk.

I have struggled so much with this and went into a profound grieving for a couple of weeks. We did therapy 6 days a week for 4 years so that Ash would be able to walk in the first place. To face her losing her mobility is heartbreaking.

The leading surgeon in Australia is based in Melbourne, the opposite side of the country to where we live. Naturally we want the most experienced surgeon as we only have one chance at getting this right and anything they do will be permanent and irreversible.

Because we are electing to travel interstate we are not covered by the government for any costs involved. We have to move our family to Melbourne for 1 month and then we face 12 months of intensive rehabilitation so that she can learn to walk again.

A local radio station heard our story and is kindly helping us to fundraise as we need in the region of $50,000. The response from listeners has been overwhelming so fingers crossed we can make this happen. Our only other option would be to sell our house.

The outpouring of kindness and support from people who don’t even know our family has been so touching. Ashley and I have both shed some tears over it. I will keep you all posted how we get on and how my little girl is going.

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Garden Make-over

Our neighbours embarked on a very ambitious building project which left us with, among other things, a very large, ugly wall to disguise. We have been trying to come up with a plan to make it look less like a prison exercise yard and more like a family friendly place to hang out in.

As I have written here before, my heart an soul yearns to be in the country and I have a passion for homegrown food. This weekend we have planted two fig trees and two apricot trees along the wall. They are still small but should double in height when fully grown. The hedge is an Australian native called a lily-pilly or bush cherry. The fruit of this variety can be made into jams or cordials.

We now have an orange tree, a lemon tree, a cherry tree, two varieties of apple, a quince tree, 2 native lime trees, a mulberry tree and an olive tree, as well as the newly planted fruit trees. I have Swiss chard (a type of silver beet) in a tub as well as curly kale. The large tubs that the trees came in are going to be put to use to grow potatoes. Not too bad for an inner city garden!

The plan was to have chickens but Ashley is going to be having major surgery soon so they will have to wait.

I also planted jasmine to climb the wall next to the bench and hope to create a mosaic mural to go above it. We are getting a good combination of rain and gentle sunshine at the moment so hopefully our garden will thrive.

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Ignorance Still Exists

I met a lady the other day who completely shocked me with her ignorance. She was a fairly well educated, professional woman who I had been having a nice conversation with until I happened to mention that I had heard of a young boy with cerebral palsy who had been badly bullied at her son’s school. Her response was so unexpected it stunned me.

She replied “I’m not at all surprised, after all they try and force ‘those’ children on us wether we want them mixing with our children or not. It’s not even as though they are normal so why do we have to pretend. They should just build special schools where they can all go then we wouldn’t have this problem. You can’t blame the other kids for picking on them!”

At this point let me say that I have never hit anyone in my life but I could feel this white hot rage building up and all I wanted to do was slap her so hard that her teeth would have rattled! I took every ounce of my self control to remain calm. Our conversation then went as follows:

Me: that’s a very interesting point of view you have
Her: smug smile accompanied by little preen
Me: you see my daughter is one of ‘those’ children.
Her: red face accompanied by squirming
Me: she had a brain haemorrhage when she was three days old and has cerebral palsy. No one could have predicted it before that moment and there was nothing that could treat it or stop it from happening. She’s had hydrocephalus, meningitis, 3 rounds of brain surgery, 2 rounds of eye surgery and was listed as critical for the first five months of her life. I spent hours by her side just praying that she would live. When the doctors told me she would have a disability I didn’t care because I loved her so much that I was determined that no matter what, she would have a life where she was loved and valued. Unfortunately I can’t protect her from meeting people like you. For all that she has been through do you know the one thing that she wants more than anything else? To be accepted the same as any other person! You’re right in one respect though, it isn’t the other children’s fault. It’s up to their parents to teach them to have empathy and to accept others regardless of differences. Unfortunately ignorant, small minded parents tend to breed children the same. One more thought for you to take away with you – disability doesn’t discriminate. Your son could have an accident tomorrow and become one of ‘those’ children. How would you like him to be treated if that were the case?”
Her: “I think I’d better go now”

There was no apology. After she had gone I wanted to cry when I thought of my beautiful little girl and all the other beautiful children I have met. I can only hope that this woman and her ugly mind-set are in the minority.

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