Archive | July, 2012


29 Jul

It may seem strange to consider myself lucky given our situation with Matilda but I do. I am lucky to have so many amazing friends. I am lucky to have a family that supports me both financially and emotionally. We couldn’t get by without them. I am lucky to have a workplace that is supportive and flexible. And most of all, I am lucky to have Matilda. For however long we get to have her for. She inspires me, delights me and makes me so proud.

I make it my mission to make her laugh as often as I can, and I have a few little things up my sleeve that usually do the trick. For some reason, she finds my singing (especially faux operatically) particularly hilarious. Here is what we usually get up to when she gets home from school.

I wanted to use this post also to say thank you so very much to the overwhelming response to the TeamTilda fundraising effort, I am blown away by the generosity that we have been shown and the kindness. It is yet another reason to feel incredibly lucky. We are well on our way to being able to start looking at vans and getting the ball rolling.

You are all wonderful.


Asking for help

21 Jul

Yesterday I spent a whole lot of my time on the phone, trying to navigate my way through the tangled web that is the world of ‘Disability Services’. The complexity of this system is really enough to make you want to throw your hands in the air and definitely just not care. I was transferred, I was put on hold, I was told that we weren’t eligible for this and we wouldn’t be able to access that. I did also speak to some very lovely people who would definitely be able to help us but of course there is a huge waiting list so….

It has become clear to us in the last month or so that we need help. We need help in financing equipment to make Matilda’s life better. As I get huger, things are becoming more difficult and a hospital bed which can be raised and lowered has become a need. With the imminent arrival of Matilda’s sister, we will also be needing a new vehicle to accommodate us all. One that is wheelchair accessible would make things so much easier. These things of course are expensive.

It is not an easy thing to admit that you need help, it is very humbling. It is uncomfortable and it makes us feel very vulnerable. With all of that said, we are amazingly blessed to have the very best friends in the world who have recognised our need, who have recognised our own reluctance to ask and who have taken it upon themselves to set up the fundraising arm of TeamTilda purely for our benefit. I cannot really express in words how grateful I am to them for this. It is like a huge burden has been lifted from us.

They have set up a TeamTilda Facebook page  – to campaign for donations and items for a raffle. A poster has also been drawn up to distribute to try and source funds for us. Team Tilda Flyer.

It has only been a few days since it all kicked off yet on Wednesday afternoon, I got the call that Matilda’s new hospital bed was already available to be delivered. A gigantic thank you to Matt for making this happen so quickly. A lovely man from Rehab Hire came and set it all up for her.

She is extremely comfortable and now that I have a single bed set up next to her, I am able to go in to her and not get kicked!

I will admit that I did have a strong emotional reaction to the bed once it was all set up in her room and the lovely man from Rehab Hire had left. It isn’t something that you should see in your 5 year old’s bedroom. But I know that she is comfy and I know that it will make our lives that much easier.

So already we have received such a gift and it seems so greedy to ask for more but Matilda’s needs trump my pride. If you are able to assist in any way, please contact Adam on 0409 888 369, or Matt on 0418 518 790 or visit the TeamTilda facebook page for more details.

Health Update

I am sorry to report that the vomiting does continue. We have learnt to live with it and certainly the new bed has made things so much easier when changing sheets! It is clear to me that Tilda is just not able to tolerate as much feed as she once did. I am going with the theory that as long as she is cheery, with wet nappies and not looking like she is losing too much weight, I am not going to stress over it. There is no point in trying to force her to take more in when it ends up coming back up anyway.

The good cheer is what is important and we have that in spades at the moment. School has returned and she is loving the stimulation and activity. Every day this week, she has come off the school bus smiling and we have a wonderful play in the living room with lots of giggling before her afternoon feed. As long as that keeps happening, I am content.

Much love


On the fifteenth of May, in the Jungle of Nool..

13 Jul

In the heat of the day, in the cool of the pool…

So begins Horton Hears A Who, Matilda’s all time favorite book. Since she was about 2 years old, I must have read this book to her a thousand times or more and now have the dubious talent of knowing it off by heart. The first half anyway, as it was a very useful book for putting her to sleep!

She hasn’t shown a lot of interest in hearing Horton for a while now but in the last few days, my talent for reciting it has come in quite handy. Her sleep of late, has been shocking. We are not quite sure what is going on but she has taken to waking every 1 – 2 hours, moaning softly to herself, not entirely awake but certainly not asleep. There has been no comforting her and it was getting increasingly frustrating. It was only out of desperation, that the words “On the fifteenth of May, in the Jungle of Nool..”came back to me but they have proven to be just the ticket. So now, I am able to quietly recite it to her, half asleep myself and she settles down pretty quickly.

The vomiting has come and gone and come back again but we have learnt to manage it. It is all about controlling the timing and rate with a bit of finger crossing thrown in for good measure. We did have a slight crisis on Sunday night when her new Mic-key button completely came out! I was transferring her from the living room to her bedroom and she still had her tube attached which got caught on her chair. It pulled the whole thing out, much to all of our shock and surprise. We taped some gauze over the hole and rushed down to the Children’s hospital to get it put back in. Thankfully, we were seen straight away but in the hour that the button had been out, the hole in her stomach had already started to close over and it took some coaxing to get it back in place. This is a very good reason for us to learn how to do it ourselves which we will do as soon as possible. Still, it was the quickest in and out at the hospital that we have ever had and we have had no problems with it since.

Today was the live Dora show!! Tilda and I and my Batten peeps, Nicole and Jack all went along to Her Majesty’s Theatre with hoards of other Dora loving small people. I had booked us a couple of wheelchair seats so that Jack and Tilda could be comfortable. Unfortunately, they weren’t next to each other (apparently, people in wheelchairs don’t have friends in wheelchairs) but nevertheless, an excellent time was had by all. Well, Jack and Tilda anyway. Nicole and I tolerated the show but enjoyed watching our small ones love it.

Tilda wanted to dance, had a jump around, a short snooze and a little vomit just to finish things off. It was lovely to see her happy.

She hadn’t been for a while there and that always sends me into spirals of despair. I hang on to her happiness as the only good thing in this shit-house situation. When she goes through a period of unhappiness (which on reflection, she is 100% entitled to), I imagine the worst – that I will never see her smile again but so far, she always comes out of it and blows me away with her resilience and never ending good nature. Even in the middle of a vomiting episode one night, I was able to get a giggle out of her.

What a champion.

Thank you!

3 Jul

Thank you so much for the outpouring of love and excitement and joy! It has taken me a while to process everything to be able to write about it all. There has been such an array of emotions – elation, fear, sadness, anxiety, anticipation to name just a few.

To go back to that moment – we arrived at the genetic counsellors office about 5 minutes before we were due, I was so glad to have Tilda there, to fuss over and focus my attentions on. She, of course, ignored me completely, happily watching Dora on the portable DVD player. We only had to wait a few minutes before Nikki, the counsellor, came out of her office to call us in. She didn’t give much away but ushered us through her office door. Before I even really sat down properly, she just came out with it, “It’s good news!”

I, of course, burst into tears. I think the build up to that moment just exploded at that point! She went on to tell us that our baby is NOT affected by Batten’s but was a carrier. This, we can deal with. After all, some of the finest people we know are carriers – Grandpa, Pop and of course Simon and myself. She asked if we wanted to know the gender and we absolutely did – the more we know about this baby the better I say! When she told us that it was a girl – I, naturally, burst into tears again. They were happy tears but mingled with a bit of shock. For some reason, I had really thought that it would be a boy. I think there is a lot behind that – namely that I thought it might be easier to have a completely different gender. Easier to not make comparisons, easier to separate out from our early memories of Tilda. I will confess that it took me a good couple of days to get my head around the news that we would be having a girl. It seems crazy, especially when all we really care about is that she will be healthy but emotions do not do as they are told and do not follow logic. Now, I can’t wait to meet her. I am so delighted to be having another beautiful daughter. A sister for Tilda. There is nothing better than a sister (mine rocks!).

Of course, all of this is also tempered with underlying sadness that our new daughter will never know the Tilda that we know. We will tell her stories, and show her videos but it is not the same. The sadness comes when we realise that although this is the absolute best news, it does not change things. We will have a daughter, and we will lose a daughter.

I have been very angry at Batten’s in the last few days. A mum wrote on the facebook support page once, that if Batten Disease were a person, she’d like to punch them in the nose. I don’t know if I would resort to violence but I completely understand the sentiment behind it. It’s such a mean disease. Unbearably mean.

Tilda’s vomiting has returned – not with a vengeance but enough to be anxiety-inducing. I am waiting to speak to the gastro doctor tomorrow and we see our pediatrician on Thursday. We have stopped using the J-tube because although the Coke did work, it unfortunately kept blocking and seemingly always at about 2 in the morning. So we are just doing gastro feeds which she had been tolerating quite well up until last Friday. Since then, we have had a few good days and a couple of not so good.

And that’s the way it goes isn’t it? For all of us really.

Today was a good day and today we continue to rejoice in our good news. I think more than anything it is such a delight to have something so positive to get excited about, something to look forward to and something good to hold on to. Thank you so much again for the enormous support we have received. It fills our hearts and makes us feel strong, even when we are not.



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