Restoring Hope

Yesterday I had the pleasure of attending the Imagine More Conference here in Canberra.  I only attended Day 2 with hopes of collecting ideas on how we can create an inclusive environment for Ayla, especially at her mainstream school.

There were some great sessions to listen to from learning about segregation to creating communities around our kids, inclusive education, modifying the school curriculum, the NDIS and advocacy.  I have lots of ideas written down to come back to.

But the interesting thing is this .....I had an almost devastating lightbulb moment within the first 3 minutes of the morning welcome!!  It set the tone for the rest of my day and at times left me feeling completely bereft and a little desperate to fix it.

Jan Kruger (of Imagine More) began discussing HOPE.  In an instant, my stomach dropped, my heart sank (and hurt) and a lump formed in my throat as I suddenly realised ...."I've lost hope".  Over the past 18 months I have been gradually losing hope for Ayla ....or perhaps losing hope for the plans and goals that I set for her.

It has been tough to realise that all of the ideas and plans that I had put in place when she was a wee one, just weren't happening and possibly wouldn't.  We still have no clear communication method with her and I consequently have no idea of her cognitive capacity.  I nearly cried ...several times.  Ok, there were a few tears in the bathroom and again on the way home in the car.

All of this has led to me one conclusion.  I can't plan anything, until I have yet another go at finding a reproducible way to communicate with Ayla.  Once we have communication (on some level), then I can start to make new plans and goals ....bigger plans and goals.

And just a little update on Ayla:
She didn't have tonsillitis!  LOL  No, she had Hand, Foot and Mouth so badly that she had to be hospitalised because she couldn't eat or drink.  She's been very irritable and crying most of the day for 2 weeks now (despite the HFM being gone) and she has conjunctivitis as well.  It has been very challenging.  The neurologist suggested that her current symptoms are consistent with viral meningitis (as a result of the HFM) and thinks that as well as fatigue, she is probably experiencing headaches and that it could last a few weeks yet.  She has had a good day today but we will see what the weekend brings.

My Poor Big Girl

Ayla is currently up at the Canberra Hospital.  The poor little kid has been sick for a week now.  Not just a cold or flu.  It's the end of the school year and we pushed her a little harder in the last couple of months with hydrotherapy on Friday afternoons, she had her ABR workshop in October and on returning, we have increased her therapy too.  It was clearly not our brightest moment.  She's so rundown and exhausted that she currently has tonsillitis, middle ear infection in both ears, conjunctivitis and a huge cold sore.

It has been really challenging with 2 different antibiotics plus prednisone and still no response.  She hasn't eaten in a week.  This morning we made the decision to take her back again and Steven contacted me to tell me that they had knocked her out with a painkiller and filled her full of more steroids.  She still may be admitted.  So many drugs in such a tiny little body.  I have absolutely no idea how I'm going to clean up after all of that.

Although I know that Daddy is with her, it's hard being at home while she's in hospital, but Billie still needs her sleeps and a hospital is no place for the healthy.  There's no point in having Billie bring something home as well.  There's precious little sleep to be had as it is.

So I think that there will be at least another week off school and very little going on in Ayla's life for the rest of the year.  Roll on January ....can't wait to spend a few weeks at Mum and Dad's place, hanging by the pool with the kids.

We're Back and We're Better than Ever

It has been such a long time since I wrote a new post. Almost a year. Every now and then somebody contacts me and let's me know that they have read my blog and been inspired and it's a reminder that I didn't just start this blog for myself but to help others too.

Every day a new precious baby is born with a disability which means that every day, another parent needing understanding and some practical ideas is created. These parents don't just need understanding, they need hope that although their wee one may never 'recover' from their disability, there is hope for their children to have a wonderful life. Sometimes I'm one of those parents all over again. And after a full weekend of an ABR workshop for my daughter's therapy, I'm reminded too that there are so many parents out there that haven't discovered the one therapy that truly works.

I'm not going to attempt to get you up to speed with absolutely everything that has happened over the past year....just a few little important things. The most important is that Ayla is now a big sister! Beautiful baby Billie was born on March 7 of this year, all 9 pound 12 ounces of her. She has been a beautiful and very special addition to our family. I know all babies are special but Billie really is very special in a very unique way and if you would like to know why, check out this old post.

Ayla is doing very well. We had lots of dramas with new seizure meds, loss of skills and then a slow regaining of skills and now she is back to her old self. I've also had to pull back for a little while I rethink my goals for Ayla. I want so much for her that sometimes I think I set her bar a little high and sometimes we all just get plain ol' frustrated with each other and it's time for a rethink.

We continue with Ayla's ABR, albeit at a reduced rate due to the newest family addition, but I'm ready to get stuck into it again. New exercises, new methods of doing them and then some good changes in her structure have me motivated again. Thanks to ABR (Advanced Biomechanical Rehabilitation)the structure of Ayla's body is very 'normal' and the more normal it becomes, the better able to use it.

We are hoping to head off to Singapore for a workshop next year and to catch up with the creator of ABR, Leonid Blyum. Leonid has such a crazy busy schedule of clinics and is constantly researching to ensure our kids have the best of him so he has only been to Australia once and that was over 5 years ago. We are looking forward to catching up with him and showing our Ayla and her achievements off.

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