Archive | November, 2011

No time for a comedown

29 Nov

There is always a bit of a fear that after such a big build up to such an amazing event, we would all crash down into a sadness pit. BUT so far, there has been no time for crashing! The weekend fun continued with a visit up to Gisborne to see Nanna and Pop and spend some time with Milli, Charlotte, Taylor and Michelle who had driven all the way over from Adelaide for the Special Day. It was great to hang out, Tilda loves seeing her cousin Charlotte who is just 3 months younger, she has a particular fondness for stroking her on the head!

Then on Sunday afternoon, we had been given a number of passes to the Christmas Spectacular at Moonee Valley Racecourse from those beautfiul people at Wonderland. Included in the day was a Dora show!! So my sister and I, Tilda, Charlie, Thomas and Malachy all headed off for an afternoon. Again, the sun shone down and Tilda was delighted to see the her favorite explorer.

Ok, I have no idea why that is sideways but you get the general gist. Happiness and Delight!


She also enjoyed sliding down the massive slide.

No roller coasters unfortuntely but it was a really nice way to cap off an amazingly fun weekend.

There doesn’t seem to be anytime for comedowns until sometime next year. We have birthday’s to attend, end of school concerts to be in, Christmas to get ready for and then both Tilda and I have the whole of January off which will completely fabulous. I plan to spend a lot of the time down at the beach so feel free to come and join me!

Will report back after all our various doctors appointments. Suffice to say that Tilda is in good cheer, eating enough to make me not panic about it and the topomax wean is going very well. Huzzah!


Wish Day – November 25th 2011

27 Nov

I hardly know where to begin. What a day.  What a joyous, fun, laughter-filled, happy day. The biggest thanks must go to everyone in Team Tilda for willing the sun to shine! The day before, I was convinced that the rains were coming and even early Friday morning, I had decided that it would still be ok, even if it was overcast. Not only did it not rain at all but the sun shone down with all its might! It is truly amazing what collective goodwill can do.

Some highlights

  • Matilda on the roller coaster.  As predicted, once she got on, she did NOT want to get off! The staff actually had to tell me after an hour that she should probably have a break because she might be sick!
  • Everyone on the dodgem cars! I don’t know what it is about dodgem cars but they can turn the most mild-mannered of people into raging maniacs! The sight of people flying around that track had everyone in fits of laughter. Tilda adored it, the more bumping the better!
  • The incredible face-painter who turned all the kids into monsters, fairies, dogs and butterflies.
  • Tony the magician with his adorable bunny rabbits.
  • Looking around at one point and seeing small children everywhere clutching boxes of KFC popcorn chicken!
  • Standing inside the tent where everyone had gathered and seeing just how supported and loved we are. It was overwhelming.
  • and so much more
This was a day that we will remember and cherish forever and we hope that everyone who was there feels the same way. Yesterday and today, I am still feeding off those moments and know that I will be doing that for a long time to come.
Thank you to Dan, Danni and all the Wish Fairies from Make A Wish for making this wish come true.

Thank you to the Wonderland Funpark for providing the park, staff, food and entertainment for no cost and with such kindness.

Thank you to all of you who came for having as much fun as Tilda did.

Thank you to all the parents for allowing your children to consume enormous amounts of sugar!

Thank you to all who couldn’t come but wanted to and for sending your love to us.

Here is a link to some pictures from the day – photos that definitely capture just how much fun everyone was having. There will be more to come but thank you so much to Millie for providing these.

Matilda’s Wish Day

Thank you, thank you, thank you, thank you.



Rain, rain, go away

24 Nov

The Bureau of Meterology website is toying with me. I have been checking it all week and been delighted with its reporting of sunshine for tomorrow. BUT, today it is showing a looming rain cloud and I am not pleased.

I have therefore decided to turn to a much more scientific approach and am appealing to all Team Tilda supporters to send out GO AWAY RAIN vibes to the universe.

Thanks! See you tomorrow!!


Sunny days

20 Nov

First of all a huge THANK YOU and CONGRATULATIONS to my very lovely friend Benita who ran the City2Sea last weekend and raised an amazing $3117 for the  Australia Batten Disease Support and Research Association. Thank you so much to everyone who donated – it is absolutely fantastic. Benita assures me that the run wasn’t too painful and I am thrilled that she made it into the Top Ten Fundraisers list! Well done!

We are in countdown mode for Friday and can’t wait to see a lot of you there. I am keeping my eye on the weather forecast and so far it is promising. Fingers crossed for a lovely sunny day.

With sunny days comes a new school uniform! I had been looking for one in Matilda’s size for ages but haven’t been able to find one so I was thrilled when her teacher sent a couple of dresses home in Matilda’s backpack. They are, of course, a little big but she looks delectable.

The teacher also sent home a snazzy contraption called a Little Step by Step. It is used to record messages and can be activated by Matilda. Simon and I had rather too much fun recording things on it (some of which needed to be deleted!) and now we have an added of way of sharing information with the school and hearing what has been happening in Tilda’s day.

If you visit the Make A Wish website, you may recognise the little girl looking into the fireplace.  A few weeks ago, Matilda did a photo shoot for their Christmas appeal letter to donors. I wasn’t sure how she was going to perform but she did splendidly! She was little too enamored with the baubles on the Christmas tree so we had to put them in the fireplace to get her to look there! It was a lot of fun and we were happy to be able to help promote this lovely organisation that I used to be a part of.

Matilda is no stranger to the media. Recently, she starred (possible bias alert) in the October edition of  Gardening Australia with my very dear friend Millie. That shoot was also heaps of fun and she got to be in it with her favorite person in the world, her cousin Charlie.

More media fun was when we were living in Darwin.  The organisation I was working for at the time needed a small, cute child to promote their Christmas Carols event and so Matilda and I appeared in the NT News. The story is riddled with fabrications and half-truths (Matilda really had no idea what Christmas was all about and certainly wasn’t interested in learning the words to Rudolph!) but the picture is nice and it too was a lot of fun!


In health news, we have once again dropped a dose of Topomax in the morning and yet to see any significant fallout. At this rate, we may have this drug completely weaned before Christmas which will be great. I see no point in loading her up with drugs if they aren’t doing anything. The eating is, as always, a battleground. She likes one thing one day and we happily prepare it again only for her to turn up her nose at it. We will see what the Gasto Clinic have to say on the 20th December. Other appointments are for the 6th December with our pediatrician and on the 15th December with our pediatric neurologist. They all seem to come in a cluster! And, I have to say, are not a whole lot of fun. There isn’t much anyone can tell us so it is really about us updating them on where she is at and how she is doing. I should possibly just direct them all to this blog and be done with it.


See you Friday 🙂 Photos most definitely to come.








10 Nov

Writing can be a frustrating exercise. Thoughts don’t tend to neatly arrange themselves in a cohesive manner. They swarm around in the head, jumbled together, layer upon layer upon swirl upon swirl. I guess that is why writing can be such a cathartic thing. It forces one to set down those thoughts in some kind of understandable way. It forces one to sort through the swirl and try and get to the heart of whatever is going on up there.

We are wrestling with some big decisions here. Decisions about whether or not to have more children and the number of layers and swirls going around and around is enough to make one very, very tired. I don’t have any answers, only a lot of questions and concerns and inexplicable feelings. I know that we don’t have to make any decisions now and that having pressure to do so will only make the process more intense but there is a feeling that once one has started a thought process, some kind of resolution at the end of it would be nice.

Writing helps, and time helps. I wrote the paragraphs above yesterday and already today can feel the angst lift a bit. It isn’t something that I have to angst about right now. It is time to let it be for a while.

Thank you to all who have already responded to the invitation! Please feel free to bring any small children you think might enjoy the rides and frivolity! We are really looking forward to seeing everyone and particularly looking forward to hearing the sounds of Tilda as she rides high on the rollercoaster.

Thank you also for the comments, messages and outpourings of support. I say it a lot but it really means the world to us.



New Helmet, New Haircut, New Month!

9 Nov

It is such a cliche but honestly, how fast has this year gone? I cannot believe that we already in November and it is nearly time to start thinking about Christmas. Yeeks!

November has started well, we have a new haircut and a new helmet!





The hair was just getting too difficult to manage and with all the roly poly’s and jumping she does, it was time for something easier. And the helmet was one I found online through a company called Thudguard. I particularly like the little ears on the top and think she looks very sweet 🙂

No real news to report. Which is always a positive. Tilda’s eating has improved a bit since last I wrote. The school are very kindly doing a regular weigh in with her and she has put on a whole 200 grams! Hopefully we can push this a bit higher. She is still really enjoying school and we are eternally grateful for their amazing support. She is looking forward to her cousin Charlie’s birthday party on Sunday and of course we are now in countdown mode to Wish Day! Invites have been printed and should be arriving in letterboxes any day now!




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