Isn't that what elderly people get????

Soooooo........I have pneumonia.  That sounds kinda weird when I say it.  Pneumonia.....yep, still weird.  Isn't that something elderly people get??  The good news is that it's not catching.  So Ayla and Steven are all good.  It started as agonising pain near my left scapula on the last night of my Mummy time in Melbourne.  Yeah...you know that whole Osteopath thing......yep, wrong doctor!  That ridiculous amount of pain didn't really have a whole lot to do with my ribs (they all cracked and creaked when they should have) but with those little things called lungs that are underneath.  I think the 2 days of 40+ degree temps kinda tipped me off :).

I've had heaps of time in bed.  I can't believe that in the first week I was so ill that I didn't even want to knit.  That's REALLY sick!  This week I have been knitting but that little guilt ridden person inside keeps saying, "Don't ya have some packing to do??......and some washing???? .....so ya can pack?" ....I swear that voice has an Irish accent.....or maybe it's the drugs....for the pneumonia!

Hmmmm.....holidays are coming and I think I seriously need them.  2 weeks of beach and 1 week with my Mummy.  Just what the doctor ordered!

Nothing Left to Do

I've been following Schuyler's Monster Blog for around 3 1/2 years now.....since we received Ayla's diagnosis and were given a name for it.  Rob refers to Schuyler's PMG as a monster that lives lurking behind his daughter's eyes.  The kind of monster that wants to strike his daughter down with the devastating seizures that are part of the symptom picture for Polymicrogyria for around 85 - 90% of those who have it.

Schuyler's case has always seemed to me to be the Fairytale of the PMG world......at least from the seizure point of view.  She's been my beacon of light.  I tended to think about the possibility of Ayla and seizures and then think, "Schuyler's 11 and she hasn't had any yet.  Ayla might be lucky too."

And then tonight I read Rob's new post.  And tonight I'm thinking differently.  Tonight I'm thinking.....

"My beacon's gone and that fucking monster is coming for my kid".

And now there's nothing left to do but let the tears of realisation fall.

Mummy Time

I went away to Melbourne on the weekend to visit a long time friend.  We both had some Mummy time together.  We haven't seen each other (without children in tow) in around 6 years.  I have just realised that we enjoyed each other's company and conversation so much that neither one of us even thought to take a photo!  I can't believe it.  It's ok though, because I don't think either of us will forget this visit, EVER.

We stayed at a lovely hotel, The Grand Hyatt, on Collins St, shopped and lunched on Bridge Road and in the City, and had the most amazing dinner at Neil Perry's Spice Temple...see I'm trying to give linkys to make up for the distinct lack of photos :).  And although our dinner at Spice Temple was one of the highlights.....unfortunately it isn't what made it unforgettable.  Somehow, I managed to pop 4 of my ribs and woke in the middle of the night in agonising pain and unable to breathe...I'm giggling now because I am feeling better....  I made it through the night by doing yoga stretches all through the night in the bathroom so I wouldn't wake my friend and after each little 'middle of the night' yoga session there was a little relief so I could get another 30 mins sleep, but by morning......Yeah, there was no salvaging me.  I was a wreck.  My poor friend spent the morning on the phone cancelling an appointment we had and trying to find me an Osteopath in the city.

I had to wait until 10.30 for the appointment but it was definitely worth it.  Oh, to breathe again!  Just 1 rib left to get back in and hopefully that will happen this afternoon.  Feeling heaps better today apart from not being able to take a full breath, cough, sneeze, yawn....possibly fart, I haven't tried that yet (sorry, in my house farts are funny).

Although I wasn't 100% well for the weekend I had a wonderful time just being me.

Communication - Simple and Glorious

Communication with Ayla can sometimes be very frustrating.....sometimes it can be simple and glorious.

Here's our dinner conversation tonight as Ayla was deciding that she was finished her meal:

Mummy: "Would you like some chicken?"...I place the chicken on Ayla's tray table.

Ayla: *picks up chicken.....drops over the side of the tray table on to the floor*

Daddy: "Do you want some noodles?"....Daddy places a small handful of noodles on the tray table.

Ayla: *picks up noodles.....drops them over the side of the tray table and on to the floor*

I think that's pretty clear.....and glorious.....and kinda funny.

First Day at School #2

Here is another very image heavy post. It was Ayla's first day at her Special school today, and another School Uniform. A fairly quiet day of getting to know the kids, the teachers and the Conductor (Gabi). Gabi is the person who is liaising with the teachers to create a program very similar to Conductive Education for our school.....and so far, I quite like her attitude to Special Ed. Anyone who stresses the importance of good nutrition for kids like ours gets a big TICK of approval from me :).

Ayla has made a gorgeous little friend already and surprisingly they both look very similar with their hair in piggy tails.

If you have read the earlier posts regarding Special Education here in Canberra, you will know that Steven and I have invested a lot of time into making, what we consider to be, 'improvements' to the school that Ayla is attending. Our philosophy has been that it is not enough to deal with a child's mobility impairment by plonking them in a wheelchair and concentrating on other things. That's not to say that a wheelchair won't be on the cards and it most certainly isn't implying that choosing a wheelchair for a child means that you're not working on their mobility challenges. Just that we don't think it's acceptable in a Special school situation where the children attend the school to get extra help with their challenges. The Conductive Ed program is really just the beginning and it is looking to be an exciting year for all of us. Will keep you posted when I am sure that my little something exciting is going ahead at school....

We have just finished the chook pen at the school and tomorrow I will be planting seedlings in the vege garden. And I think the chookies will be arriving late next week!

First Day at School #1

My big girl had her first day at school today......well, school #1 anyway. Monday and Tuesday are Ayla's mainstream school days, a day off on Wednesday and then Thursday and Friday are 'Special' School days....for a little while.

There were no tears from either of us. Tears were never going to happen on Ayla's part because she was way too excited about her return to school and playtime with the kids. She barely blinked when I said goodbye.

I didn't cry but I did choke up a couple of times. The first when I saw her all dressed in her uniform and surrounded by the other kids in her class. It was just amazing that we had made it that far. There was a time when I thought it may never happen. The next time I choked up was when a few kids were genuinely excited to see her at school and wanted to say hello. That probably sounds silly to most of you but when your child is the only non-neurotypical kid in a class full of neurotypical kids AND it's obvious that the other kids are VERY well aware of your child's differences, it does warm your heart to realise that they don't care and they still like her.

The third and last time I choked up was when the Principal of the school approached me. How wonderful and comforting to have the Principal come up to me and say, "I can't tell you how thrilled I am to have Ayla here today and for this year". We may have had to forego on the Steiner school down here, but it's an amazing experience to have absolutely NO obstacles to your child just being one of the kids in a mainstream school.

Ayla had an awesome day, beginning with squealing and giggling with excitement all the way to school, and roping several innocent bystanders into tickling her hands! She was totally exhausted when I picked her up at 1:30, but ready to do it all again tomorrow.

Learning to Say YES

I've had lots of lessons to learn over the years....we all do. Among my lessons has been learning to say 'NO' and not feeling guilty about it. My new lesson however, has been to learn to say 'YES', though not in the same context. 'NO' was about not taking on more than I could handle. You know how it goes.....a friend asks you a favour and then of course you say YES before thinking what that means....or you are asked out for lunch with a friend on the same day that you have 3 appointments and a tired child in tow....but you say yes because "I can totally make that work!". 'YES' this time around is saying 'YES' when I'm asked if I need some help.....Why yes, I do!!! I do need help with that door. Yes, I need help holding the umbrella whilst the rain is teeming down and I am trying to get Ayla out of the car and have us both remain dry. Yes, I really need help pushing Ayla's stroller whilst I carry a heavy box. And 'YES', I would really like some help with Ayla's ABR therapy. I know my little profile to the right says, "I'm a mother, carer, therapist, advocate, and fundraiser for my daughter Ayla, a wife and friend to my amazing husband, and a crafter.....and sometimes a little tired", and I know that sounds like I truly can do it all.....But I'm kidding myself. In that little comment, there is actually no room for me and I'm important too! So not only did I say 'YES' when the help was offered.....I actually asked for the help and got it! I have someone coming to the house 3 days per week to help with Ayla's ABR. During that time, I find that little piece of myself that loves to cook and I cook my family a beautiful nutritious meal. In peace and quiet, with space in my head to think, organise and create!