Archive | October, 2012

TeamTilda Function wrap up

31 Oct

Tilda definitely has some sway with the weather. It seems that every time we have a function in her honour, the sun gods come out to play and Sunday was no exception. It was a beautiful day down in Altona and a splendid afternoon was had by one and all at the very fine Mosaic restaurant.

It has taken me awhile to get to this update. One, because unfortunately, I am experiencing some third trimester nausea which is absolutely no fun at all but it really is reason number two that I haven’t been able to write.

I am totally overwhelmed.

I feel blessed and grateful and humbled and honored to have the friends we have and to have borne witness to so much generosity and support. Since the intrepid fundraising arm of Team Tilda began, they have gone above and beyond and with support of all of you – raised nearly $30,000 for Tilda, for us. It is an enormous weight off our shoulders – that the van can now be fully paid for, that we can provide Tilda with any other equipment that she needs to make her more comfortable, that with the imminent arrival of Little Bubs (or Zinger as Simon likes to call her!), financials are much less of a stress.

Thank you so, so much. Thank you to all those people who donated prizes and money, bought and sold raffle tickets and bid on items. It is hard to know how to adequately convey such thanks but know that you have made a real difference in our lives and we will never forget it.

The online sports memorabilia auction was a huge success, raising over $7000!  And for those who don’t have access to Facebook, the raffle was drawn as follows:

1st – Noosa holiday – Robyn Ryan
2nd – Hotel Windsor – Mark TImms
3rd – Apollo Bay Beach Escape – Leonie Fairless
4th – Piccoli Portraits – Joey Dorrington
5th – Thirteenth Beach Golf voucher – Dave Wagner
6th – Tupperware Hamper – Melissa Selvaggio
7th – Annie Beach Photography voucher – Shirley Fagan
8th – Brokewood Wines – Anette Maidment
9th – BBQ Galores cooking set – Dave Horman
10th – Target voucher – Ben Verrall
11th – Mosiac Restaurant voucher – Christine Johnston
12th – Apple iPod – Randolph Pereira
13th and 14th (2 sets of) – 3 x Wiggles Tickets – Taya McDonald and Brett Van Der Vilet
15,16,17,18,19th – Manspace Magazine 12 month subscription – Sarah Maidment, Marnie Sheehy, Aaron Thomas, Michelle Field & Chris Anstec.

All in all, Sunday was a wonderful culmination of the hard work of Adam, Matt, Chez, Kylie and everyone else who contributed. I thank you from the bottom of my heart.

In other wonderful news, I had a knock on my door this morning from the very lovely Bill who spent the day building our ramp! It is FANTASTIC!!!! I got home from swimming with Tilda this afternoon and it was all ready to go. To get Tilda inside, I used to have to leave her chair at the bottom of the steps then carry her up and place her in her bed and get her comfortable before going back and lugging the chair up. Cumbersome, tiring and awkward. NO MORE!

Thank you so much Bill, you’ve changed my world for the better!!!

It has been a busy day today – I also had a visit from the delightful Kelly, Matilda’s OT from school. She came to talk about hand splints and hoists and it looks like we have a plan. We are putting the paperwork in for a portable hoist and her hand splints will be made in the next couple of weeks.

Tilda is still in a great place, lots of smiles, doing well with her eating and generally sleeping pretty well too. Long may it continue!

Lots of love to everyone



TeamTilda Function Sunday, 28th October

21 Oct

It is all coming to a head! Prizes have been donated, raffle tickets sold, sports memorabilia bid on and now it is time for the party! Our wonderful friends have organised everything. Details are as follows:

Date: Sunday, 28th October 2012

Time: 1:00pm to 5:00pm

Place: Mosaic Restaurant, 48 Pier Street, Altona

Price: $20 a ticket to be bought at the door. This includes food with drinks available at bar prices.

Tickets are limited so if you could let me know if you would like to attend so we can lock down numbers by Wednesday, 24th October, that would be wonderful – please email

Fantastic! We hope to see you there!


Holding a steady course

17 Oct

Back to school, back to normal routines and Tilda is doing well. I am always kind of hesitant to post about the run of good days because I don’t want to jinx it! However, vomit-free and smiley is something to be celebrated! We have also managed to increase her food intake to 500ml (750 calories) a day without any adverse effects – I am hoping by the time we have our next catch up with the pediatrician, this might translate into some much needed weight gain.

The last appointment we had, brought some not entirely unexpected information but certainly information I hadn’t begun to think about. Part of this horrible disease is that it can cause muscle contractures, particularly in the ankles and wrists.  I had been noticing that Tilda’s right hand now seems to stay closed and bent backwards.

And when the pediatrician tested her ankles, she noticed that her right one was definitely losing its flexibility.  She has recommended both AFO’s and hand braces. The hand braces, I am ok with and think that she won’t mind too much – they won’t be something that she wears all the time but perhaps just overnight. In regards to the AFO’s, however, I am not looking forward to either the process of getting her feet cast or having to make her wear them. I foresee a bit of a battle. Which did lead me to ask the question whether it was worth it? When posed to the Batten community, there was a mixed response. Many of the parents had tried for a while and then decided against using them because their child wasn’t happy. Other parents have seen a real benefit. The whole thing leads back to the eternal mantra of ‘quality of life’. Will wearing the AFO’s for a small amount of time throughout the day ultimately assist in helping reduce painful muscle contractures thus leading to a better ‘quality of life’?? Or will the AFO’s be so unbearable that the time spent in them is so horrible that it negates any positivity that they may provide??

I don’t know.

At the moment, we have an appointment booked to get her feet cast on the 13th November. I will take her and see what happens.

Pregnancy Update

It occurred to me that since announcing Matilda’s baby sister was healthy, I haven’t mentioned much about my pregnancy. All is going very well – I am a gigantic ball of baby

but apart from feeling a bit tired and rather ungainly, I am pretty good! Only 9 weeks to go, our due date is the 22nd December but I am very much hoping that I go a little bit earlier than that. I am actually aiming for 12/12/12 because how cool would that be?!

Impending birth is always a time for a bit of navel gazing (especially now that said navel is now an outie). I recall how around this time last year, we were in a headspin because we couldn’t work out whether we even wanted to go down the path of trying for another child. Now that she is nearly here, along with great excitement and joy comes a fair amount of terror. Understandably so, I realise. Many of the concerns I have, I think I would have even if Tilda did not have Batten Disease.

Most of all, I am scared about ‘Parenting” again. We don’t parent Matilda. Not really. Not since she was able to talk and interact with us. We are her carers, her providers, her nurturers. I admit that I have shouted at Tilda, even in the last week, realising even as I did it,  that shouting at her is very much like shouting at a butterfly. Not very effective. Dealing with tantrums, disciplining, guiding  – these are all the things that we once  did and will have to relearn. But oh, am I ever excited at the thought that someone will call me Mama once again.

Bring it on!


Sports Memorabilia Auction Now On!

9 Oct

Just a quickie to let you know that our beautiful friends over at the fundraising arm of TeamTilda have put together an amazing stock of sports memorabilia, which are now being auctioned. Please find a full list of all auction items and how to bid below!

Sports Memorabilia Auction

Bidding closes on the 28th October.

Thank you, thank you, thank you, thank you (it seems insufficient for how I feel) for all your support so far – from cash donations, raffle prizes, raffle tickets, beautiful comments and messages. It has meant the world to us.

More news on the TeamTilda function on the 28th October to come!

Much love



School Holidays Update

5 Oct

I approached the holidays with a fair amount of trepidation, knowing that too many days just spent at home will result in an unhappy Tilda and an unhappy me. But also knowing that outings bring with them rather a lot of complication – feeds and medicine to be packed, naps to be worked around and most of all, my expanding girth and ungainliness to battle! My plan was to do at least one outing a day, counting even going to the shops. This has proved to be a very good idea although we have had a couple of at home days just to have some time out.

The absolute game changer has been our wonderful, wonderful van! Without which, I do believe I would be a cabin-fevered mess. The ease with which I can now get Tilda out and about has been absolutely invaluable and I want to say a massive thank you to everyone who has played a part in making this possible. All those people who have bought and sold raffle tickets – we are very much nearing our goal of paying the van off which is amazing. I would like to give an especially huge thank you to the gigantic hearts of Matt, Kylie, Adam and Chezzie, who started the fundraising arm of TeamTilda and got this ball rolling. Not a day goes by that I don’t think of you guys and thank the universe for giving us such amazing friends. oxxoxoxoxo

We have spent our days visiting friends, swimming, going for drives, going down to Anglesea and enjoying the wonderfulness that is Springtime in Melbourne. Sunshine has finally graced us with its presence and we are making the most of it. Thank you to Millie for coming over last week and attending to our garden and to the delicious Clementine for “helping”!

In very exciting news, Millie’s book is now for sale, featuring our Tilda on the front cover! It is a fantastic read (even for a complete garden numpty like myself!) and I am proud as punch to see my lovely friend in print. Available in ABC shops and good bookstores everywhere!

We have been able to spend time with our Batten friends, Nicole and Jack. There is something about watching Jack and Tilda together which is really gorgeous to watch.

I am so grateful to have Nicole in my life as someone who absolutely understands what we are going through. The shitty days and the good days, we are able to share with each other which makes the load just that little bit easier to carry.

We have made a new (gigantic) friend! Thank you to Nancy for sending her to Tilda!



There has been few sad moments though. And a few days of self-pity for me. I guess the thing about the school holidays is that I get to spend extended periods of time with Tilda and sometimes it highlights just where we are. I look back to the September school holidays from last year where we experienced the absolute joy of the roller coaster for the first time! Which eventually led to Matilda’s Amazing Wish Day. Kylie and the boys and Tilda and I returned once again to the awesome Wonderland yesterday afternoon, where the very kind and gracious Melissa remembered exactly who we were and showered us with free vouchers for food and rides and everything we could possibly want. The last time we tried to go back to Wonderland, Tilda was not in a great place. It was the summer school holidays and she had just had the nasogastric tube inserted. I was keen to see whether her recent stretch of good days would mean a return to that absolute joy.

Unfortunately not.

She had a good sleep when we first got there.

She woke up looking pretty refreshed so we thought it was time for roller coasting action. Because of my delicate condition, I wasn’t able to go on the roller coaster myself so Kylie and the boys took her.

And it just didn’t work for her. She didn’t hate it but she didn’t love it and when she got off and we put her back in her chair, she had a look on her face that broke my heart. It was a look of bewilderment and sadness. I am not sure just how much Tilda takes in but it seemed to me that she recognised where she was and she recognised that she could no longer take part in this activity that once brought her such pleasure.

Fuck you, fuck you, fuck you, fuck you Batten disease. The cruelty by which by you have stolen my child infuriates and devastates me in equal measures. Just as I start to cope with what you throw at me, you turn around and break another piece of my heart. How to bear the unbearable?


This is how I bear it. Because if she can, then I can. This was taken only moments after we left the park. I pulled a face and made a stupid noise and was able to make her smile. And as long as I can do that, I will be alright.

Much love to all


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