Ayla's 50 metre Challenge

Here in Canberra, our family is part of a group called Friends of Brain Injured Children (FBIC). They are a great group that gives its member access to small amounts of funding throughout the year to spend on therapies. On the weekend FBIC ran their first ever 'Riverwalk' ...sounds odd, I know as Canberra doesn't really have a river running through it. Riverwalk began in Queensland some years ago and is an opportunity for the parents of brain injured children to raise funds for their kid's therapies.

So this year FBIC in Canberra decided to join in the fun by hosting our first ever 'Riverwalk' by Lake Burley Griffin. Ayla took part in this and we added a little twist to make it more interesting. We gave Ayla the challenge of 'stepping' 50m in her walker with sponsors offering to give her x amount of dollars per metre that she stepped and a bonus if she made the 50 metres. And she gave it a red hot go.

Ayla has had a lot more challenges in the last few weeks than has been usual and this really didn't help her cause. We've had medication changes of late that have caused more seizures, bigger seizures, emotional outbursts, tiredness and big change in her ability to step. Her little legs have become quite stiff and she just doesn't want to step at all whereas before she was powering along. Don't get me started on the meds ....I'm less than impressed right now.

The other challenge we had was that Mummy in her very pregnant state has a mushy brain and left her walker at school, which is a little difficult to retrieve on the weekend :(.

So we made do with what we had (our wheelie stool, our arms and our singing) to get her moving as best she could for her challenge.



You'll see in the video that it really was hard work for her (you should have seen her stepping a few weeks ago!!). She took several breaks in Daddy's arms and eventually at a whopping 35 metres, she was just too tired and sat down on the ground. She didn't quite make the 50 metres but she pushed so hard that I'm not going to take the 35 metres away from her. We were so proud of her!

Spring Snow Bunny

It's official!  Our kid is definitely a Snow Bunny.  Last year we were pretty sure she enjoyed her ski trip but this year left no doubts in our minds.

We decided to go for Spring skiing this time around as Ayla seemed a little cold last year and we went along with some fabulous new friends too.  Thanks Caz, Jasmine and Zahara, we all had so much fun and it's always better sharing it with friends.

We spent 2 nights staying in a fabulous apartment in Jindabyne and one day on the snow.  The morning of 'Snow Day' was a little shaky to start with as Ayla had one of her big seizures at around 5.30am so tired and grumpy as hell didn't really go close to explaining her mood.  Right up until popping her in the sit ski, it was all looking as though it would go pear-shaped. But true to form, Ayla surprised me again.  There was no mistaking how much fun she was having.  She smiled and giggled all the way down the slopes ....and whinged and complained the entire time on the Chair lifts.  Probably because she couldn't wait that long to get to the top again.

Her instructor, Jordi, brought her back after 90 mins for a bite to eat and I was hard-pressed getting food in her mouth because she couldn't stop giggling and babbling.  And then off she went for another hour of fun.  It was so good to see her mood change so dramatically from when we first arrived.  It made it really clear that snow skiing was definitely her idea of Winter fun and absolutely worth the money spent on it.

If you are ever thinking that you would like your child to take advantage of their ability to have fun no matter what their disability, I highly recommend that you jump on the Disabled Wintersports Australia website and sign them up.  If you want more info check out my blog post here.

Fear

If there is one thing that every parent fears, it's losing their child.  If you're a parent of a child with a disability, that fear may sometimes border on the irrational.  It goes through your mind A LOT.  This fear never occurred to me until Ayla started having seizures.  Don't get me wrong, most of Ayla's seizures are little more than an annoyance for her and her sleep deprived parents but some of them are not.

What is worse, is knowing that that 'big one' is coming.  You can see the signs.  It's almost like her brain is irritated.  She struggles to sleep peacefully at night and instead wakes every 45 minutes to an hour, sometimes giggling, sometimes playing with her dolly, sometimes vocalising.  Sounds harmless, I know.  And then there is the fabulously great mood that she is in for the 24 hours before.  If you were a fly on the wall you would see Steven and I exchanging sideways glances at each other as the hours pass by....just waiting.  And while we wait I begin to wonder 'how big will this be?', 'will we be able to stop this one?', 'how big can these seizures get?'

Asking why, really isn't my style.  It seems totally pointless because we all know there isn't any answer.  It's totally rhetorical.  But Ayla already has so many challenges to face and it pisses me off that she has to deal with this too.

Last week a question was asked of a fellow parent of a child with disabilities what their child's life expectancy was.  After having read this post, I hope that all of you will realise that not only is that an extremely rude question to ask of anyone, it is downright cruel to ask it of a Special Needs parent.  It's on our mind all the time.  Don't be surprised if you have your eyes verbally scratched out by the parent ....you will absolutely deserve it.

Happy Days..

We have a little news to share.  It's been so hard to keep it a secret.  I'm busting with excitement and want to shout it from the rooftops.

I'll give you a clue ....pitter, patter, pitter, patter ...... Got it?  No?  Ok then.  There's going to be a new member to a our little family and it's not of the furry kind.  Ayla is finally going to have a little brother or sister to play with!  And to love her like we do.

I feel quite emotional at times.  It has been such a long and painful 5 years.  That's how long I have been wanting to have another baby but with Ayla's condition being genetic, the chances of it happening again were far too high.  I watched friends and strangers fall pregnant and have their beautiful babies.  I have felt so ecstatically happy for them, and at the same time, so devastated and heartbroken for myself.  You can't imagine the pain and the turmoil that goes on inside as you fight so hard to keep the heartache from your face while you're around them.  And you want so much to hold their beautiful newborn babes but you know it's going to be like a knife through your heart.  But the tears come and the tears go and you just have to get on with it.

You are possibly wondering why or how this is happening if we are so afraid of this condition striking our family again.  We have been having IVF and Geneticist appointments for around three and a half years now, looking at all of our options.  To be honest, there weren't really any options.  If we went again naturally, we were risking a 1 in 4 chance of the condition happening again.  If we chose to go down the route of donor sperm or donor egg, the risks were only reduced to 1 in 10.  Still too high.

A couple of years ago we were made an offer that we simply couldn't refuse.  The possibility of donated embryo's.  If you haven't looked at this option in your lifetime then you simply wouldn't know that couples sit on donor embryo lists for 5 years or more.  Sometimes they never receive that gift.  To be contacted by someone and have them tell you that they have frozen embryos that they are not able to utilise and that they want to give them to you ....it left me beyond speechless.  Steven and I didn't have to think on it too long.  What an amazing, selfless, generous and loving gift to receive.

And so here we are ......

It's still early days and yes, society suggests that you don't tell anyone until that magical 12 week mark but I can't help thinking that telling people isn't going to change any outcomes.  I have a strong sense that our fates our pre-determined (to a point ....kinda like a "choose your own adventure book").  So I'm sharing because I just can't wait anymore.

Happy days..... xx

A Defining Moment

Tanjung Benoa Peninsula - Early Morning

Today is the first day that I have had an opportunity to stop and reflect on my recent holiday to Bali.  We arrived home just over a week ago but only days after arriving home, my Mum arrived and we were off to Sydney for Ayla's latest ABR workshop.


For some reason whenever I think of Bali, I think of this little photo that I took early in the morning on day 3.  At first I thought it was because I was proud as punch of the photo but then I realised why I truly keep coming back to it.


I haven't shared with you some of the 'debacle' that was our holiday.  If you are friends with me on Facebook, you will know what happened.  For those of you that don't know.....long story, VERY short......the airline 'lost' Ayla's Chair (read 'her legs').  We had to carry a 20 kg child around in our arms for the first 5 days of our holiday while our airline played games.  It left us fairly well stuck within the vicinity of our hotel as 20kg is just a bit too heavy.


So this photo was taken in the early hours of Day 3.  I crept out of bed so that I could catch some quiet time and go for a walk along the beach.  It felt so good to be on the beach early, with the sun rising and chatting with the hard working people of Bali as they went about there job of raking up seaweed off the beach.  I felt good and happy too.  I reached the furthest point of the peninsula and walked out to the little hut set out off the shore, sat down and snapped this shot......... and then had a good ole blubber fest!  I was a little surprised at myself because I thought I was feeling really good and then all of sudden I felt completely overwhelmed with EVERYTHING!  And I mean EVERYTHING.


The loss of Ayla's chair, the treatment we received from the airline, the fact that the loss of her chair meant I was doing everything that I came on holidays to escape (the phone calls to people who didn't care, chasing people up, filling out paperwork, advocating for my child, trying to find help amongst family and friends, feeling completely stuck), the hours that I had been working leading up to the holiday, the fact that I was so exhausted.......seriously.....EVERYTHING!  I cried for at least half an hour.  And then I realised that I needed to pull myself together because it was a really long walk back to the hotel.  I stood up and dried my eyes and starting walking back.  I put one foot in front of the other all the way back and by the time I arrived I felt normal again and happy again.


What makes this a defining moment?  At first it just seemed like the story of my life, until I understood that what defined it was that I recognised that, no matter where in the world I am or what is going on, I have the strength to stand up, dust myself off and keep putting one foot in front of the other until I come out the other side..... and sometimes I even get a nice photo to prove it :).

Adventure me

Sometimes you have a day that makes you feel alive again.  One of those days that reminds you that you are not just a Mum, not just a Carer....that you are in fact, yourself.  An individual.  A person that has always loved adventure.  I had almost forgotten.

When I was in Year 12 I went on a tall ship waaaaay off the coast of Bundaberg where land couldn't be seen.  I spent the day jumping off the front of an enormous tall ship, landing in the freezing cold and extremely deep open ocean and then quickly grasping for a thick rope before the ship sailed on by me.  It was exhilarating!

For around 3 or 4 years during university, I was part of the Sea Turtle Research team at Mon Repo and I spent 2 weeks over Christmas walking around and around a teeny tiny Wreck Island, tagging sea turtles.

I spent 2 years trapping and researching Playtpus on the Gold Coast and doing LOTS of camping.

When Steven and I were married we went to Hawaii for our Honeymoon and spent 2 weeks Boogie Boarding at Bonsai Pipeline, walking over to volcanoes, climbing waterfalls and trekking alongside 300m drop offs, and exploring lava tubes.

I've been snorkeling on the Great Barrier Reef, snowboarding at Thredbo.......

This is who I am!  This fun and adventurous person.  It's sometimes difficult to remember that.

Today we spent the day Abseiling and Caving in Bungonia National Park!!!  I'M BACK BABY!!!  It was such a fabulous and exciting day with a great bunch of friends.  I was relaxed and happy and having fun.....I WASN'T worrying about work, about whether that person had emailed the information yet, packing for Bali, cleaning the house, cooking next week's snack foods and meals....BLAH BLAH BLAH.  Don't get me wrong....I do all of those things because I choose to.  But all work and no play makes Lissy VERY uptight and lost.  Today was fabulous and Steven and I have both agreed that we want to go again....on a much BIGGER cliff!!  Maybe Canyoning could be on the cards too.... :)

Bali Bound

Next week we are off (the whole family) on our first ever international holiday since Ayla was born.  It's a super exciting time for all of us....but I can't believe just how much preparation is needed to travel with a child!  Last time we went, we packed the night before but this time around it feels like I have been mentally packing for a month.

I think the most daunting aspect of this holiday is that Travel Insurance for Ayla just isn't going to happen.  And I believe that because she has a pre-existing condition.....if her pre-existing condition impacts on our trip (in other words - stops us from going or brings us home early), it is at our expense.  Not to mention the little niggly worry of hospitable costs if they are required whilst we are away.

And yes these are very real concerns and possibilities but I just can't bring myself to have the entire family living in a protective bubble because of what if's.  We all have to live and experience the joys around us.  Hell, there's risk in crossing the road and I do that several times per day.

So Bali here we come.......

If I can work out how to share photos to the blog whilst away....I will....but don't hold your breath :). It might have to wait until we come back.

Oh and a travel tip for everyone travelling with young kids.... hit Little Gullivers.  These guys have made our trip so much easier!