Archive | October, 2011

Trains and Sparkly Shoes

30 Oct

Tilda has always loved trains. For whatever reason, the sight of them can send her into a complete frenzy! When I first moved back from Darwin, Tilda went two days a week to a child care in the city. It was chosen specifically for its location right across the road looking down on the trains going between Flinders Street Station and Spencer Street (sorry, Southern Cross) Station. Most days, when I went to pick her up, I was told that Matilda spent a good portion of the day looking down on the trains and squealing with delight. Each time a train came, it was like she was seeing one for the very first time.









Today, we rode the train to see Grandma and Grandpa.  The squeals of delight are absolutely still there.


Having Grandma and Grandpa home again is wonderful. They brought Tilda back the most amazing pair of shoes you ever did see. I want them in my size.

Sparkly AND they light up 🙂 Well done Grandma and Grandpa!

General Updates

The very slow Topomax wean continues as we dropped from 25mg at night down to 15mg.  It seems counter intuitive as we have been  noticing that Tilda’s seizure activity unfortunately increasing. But I don’t believe the increase is related to the wean.  We will touch base with our neurologist in the next week or so to see if it is worthwhile undertaking a 24hour EEG to discover exactly when she is seizing and when it is benign. A lot of her ataxia and general shakiness can be mistaken for seizures and I think it would be beneficial to get a really good picture of what is going on.

The eating continues to be a battle and the idea of a PEG becomes less frightening and more appealing. She has started to refuse even her former firm favourites – blue cheese, potato chips, tomato sauce. The only two meals that she eats with absolute certainty  are her weetbix in the morning and vegemite toast. She is so Australian. 🙂

Countdown to Wish Day has begun – invites to be sent out later this week!

Thank you so much to all that have already donated to the wonderful Benita – she has already raised over $1700 for The Batten Disease Support & Research Association – amazing. If you haven’t donated and would like to please visit –

Thank you also for all the wonderful comments – I am attempting to reply to everyone but have been a bit slack. I love reading them though so please keep commenting!



Muddling through motherhood

24 Oct

Motherhood is something that I grew into slowly. It kind of crept up on me actually. When Matilda was born, I didn’t feel at all grown up enough to be a mum and I think I spent the first year feeling completely bewildered.  So many fears and anxieties – am I feeding her right, am I putting her to sleep right, am I giving her enough mental stimulation – the list is endless. And then there is the complete loss of the self that you had before. It is an overwhelming experience. But I think it is important for parents to be able to say that they find parenting hard. It is hard. It is by far the hardest thing I have ever done. And it doesn’t always bring out the best in me. I get frustrated. I get irritated. I get bored. I get disappointed and I am not always the parent I wish I could be.

But you muddle on and you hope that your mistakes won’t cause too much damage. Before I was a parent, the thing I was most scared of was that my child would be a complete horror and I wouldn’t be able to control them. And now,  the scariest thing that can happen to a parent HAS happened.  And suddenly parenting gets boiled down to two fundamental concepts – love and happiness. Being a parent now is showing Matilda everyday how much we love her, and trying everyday to make her as happy as possible.

I am not naive enough to think that this is the way it should be for all parenting. Wouldn’t it be wonderful if it was though?


We had a visit on Thursday afternoon from one of the wonderful Occupational Therapists from Matilda’s school. She came to talk about various equipment needs for Matilda that they will be able to assist with.

As is pretty obvious from other posts, Matilda is a sensory seeker extraordinaire. Wherever possible, she likes to be moving, bouncing, swinging or rolling. I had read about sensory process disorders  but never quite made the connection until a couple of weeks ago. Suddenly, things started falling in place and we have been talking with the school about how best to manage Matilda’s need for speed. They tried her out at school with a weighted vest with a really great result. She responded to it well and it is something they can keep working with. I find the whole thing quite fascinating, that this vest can actually provide the stimulation that she craves.

I don’t think her sensory seeking behaviour is a problem. It is more that her need for constant activity can put her in danger and if we can find safe ways for her to meet her sensory needs then that is fantastic. I love that she loves to move and think that her drive will only help her as she progresses with this condition. She is a fighter, that one.

Tilda spent a very happy night with her Nanna and Pop over the weekend, she was extremely excited to see them both and apparently ate her weights  worth of bacon which is excellent news. I had a very pleasant night and day off which was wonderful but by the end I was pacing the house waiting for the return of my family 🙂

And so another week begins. No doctor appointments or therapy appointments on the near horizon. We look forward to the return of Grandma and Grandpa on the weekend and to another week of rolling and jumping.

Dragon Mother

18 Oct

The human spirit is an amazing thing. This time last week, I felt so low. Weighed down with sadness. This week, there is a lightness. I am back to enjoying my days with Tilda and relishing in her everyday happiness. A duck chased across a path, a roly poly executed on the trampoline. We are back to smiling mornings and I have no doubt that the sunshine is playing a role in our lifted spirits.

This article. Notes from a Dragon Mom. This sums it up more beautifully than I could ever write and I am grateful to have found it. It is an article about acceptance and love and living in the now.

For some reason, the link to it isn’t working for everyone so with all the credit very much directed to Emily Rapp, I have reproduced it here:

Published: October 15, 2011

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design. 

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state.  He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future.  The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice.  Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now.  No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and … healthy? Well, no. The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.

Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom. The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

 A version of this op-ed appeared in print on October 16, 2011, on page SR12 of the New York edition with the headline: Notes From a Dragon Mom.

We get to have Tilda now and today, that is more important than the fact that we will lose her at some unspecified and shadowy place in the future.


We had a visit from our Family Services Worker from Very Special Kids yesterday afternoon. They are an amazing support organisation which can provide counselling, respite, family days and other services to support families going through what we are. She spent an hour with us, talking through their services and finding out about Matilda. I know that they will be an invaluable new member of Team Tilda.

Tilda is well! A slight snufflly nose but definitely less snotty than the last couple of weeks. Her morning cheer has returned and we seem to have both settled back into the school / work routine. 

Wish Day preparations are underway and I can’t wait to see as many of you there as possible. Thank you to those who have already sent through their postal addresses to Invitations are being created as we speak (Thanks Tim!!).  Please also don’t forget to support the extremely lovely Benita in her fundraising  – 

Much love



16 Oct

I think I do believe in fate. Certainly, it is of great comfort to think that there is a reason behind the things that happen in life. But it is impossible to imagine that there could ever be a reason for Tilda to endure this terrible disease.

But perhaps it is more about the reason that she is here in the first place. I struggle a little with the idea that she needs to suffer so that I can learn some kind of great lesson. But I do take comfort in the fact that she isn’t actually suffering, she is unaware that she is losing her abilities and she continues to live her life with joy and good cheer. And that is a reason for us to do the same.

This morning, I met up with a truly lovely group of people. Fate put me in in this particular Mother’s Group and though we don’t see each other often, we have stayed in touch and met today to celebrate our small ones turning 5. It was a very typical Melbourne morning with rain one minute and sun the next but the superb Collingwood Children’s Farm provided enormous entertainment for small ones and big ones alike. Tilda seemed particularly enamored with the ducks (or were they geese..?) and it was so wonderful to see everyone and see how much the small ones have changed.

Of course, my small one has changed in a rather different way so it was a little bittersweet but it was a morning of happiness and not a time to mourn what should have been.

Tilda gets pretty tired and with the amount of duck chasing she was doing, it was impressive that she lasted as long as she did. After about an hour and a half, when her lolling becoming ever apparent, it was time to go. Before I left, these beautiful people presented me with an incredibly generous gift for our family to use on whatever we wanted. It was a ‘We are so sorry’ gift, it was a ‘We love you’ gift. We, who started this journey of motherhood together; we, who’s parenting paths have diverged and we, who each have our own parenting fate. It is a gift that is very much appreciated.

Not only that but one of those lovely people is running in the City2Sea and raising money for the Batten Disease Association. Please support her and Tilda by visiting her fundraising page and donating – . Thank you Benita!

Speaking of lovely people and exercise, the very lovely Lachlan Fry this very day dedicated his ride in Around the Bay to Team Tilda and wore a sign on his back promoting the Batten Disease Association. I understand that it promoted several discussions with other riders which is so wonderful and such a great way to raise awareness. Thank you Lachie.

Once again, I am humbled and awed by the kindness and support our friends and family have shown through this time. Truly it is fate then that put you all in our lives.

Who knows what that pesky fate has in store? We can only wait and see, day by day.



Announcing Matilda’s Wish Day Celebrations

14 Oct

I write this post with great excitement and anticipation!

Make A Wish Australia and Team Tilda will be hosting a morning of celebration! In my previous post, I mentioned keeping the 26th November free but the date has now changed to Friday, 25th November from 9:00am to 12:00pm. We would love to see as many members of Team Tilda there as possible. If you are available and would like to join in the festivities, please email with your mailing address and we will send you out an invitation with all the details. 

When an idea is right, you just know it. This Wish feels like Tilda’s Wish. It will be a day for all of us to celebrate and enjoy and forget about the future, the past, the doctors, the medications, the wobbles and the sadness. A day to live purely in the moment.

We look forward to seeing you there. 🙂

Better days

13 Oct

I am very pleased to report that Matilda came home from school yesterday in a much cheerier frame of mind. Which has directly correlated to me being in a much better frame of mind!

Urge to wallow fading, fading, rising, fading.

Thank you for all your support. I know one of the hardest things about this situation is not knowing what to do or how to help. Because we all feel helpless. But an ear, a comment, a friendly text, wine and chocolate all helped me enormously over the last few days. So I thank you. 🙂

Back to your regularly scheduled updating soon.



Losing the positive

12 Oct

Simon and I are both pretty positive people on the whole but the last few days have left me wondering whether I have lost my positive completely. On Sunday, I realised that I hadn’t heard Matilda say Mama for quite some time. After a few futile attempts to try to get her to say it, I am wondering now if I have missed the last time. I cannot even explain how terribly, terribly sad that makes me feel.

Denial is great but reality has an awful way of rearing up and slapping you in the face. It is very difficult to remain positive when you have to watch your child struggle to call for you, struggle to sit, struggle to  do everything. I am hoping that it is because we are getting used to being back at school and in this new routine but Tilda has also been particularly moody and cranky of late. I have been used to her waking up in the morning with a smile and a giggle but the last few days have been a battle. She seems less able to get herself about and yesterday afternoon I watched her do her usual roly poly’s on the carpet but noticed that she was using them as a way of getting from one place to another rather than actually getting any great joy out of them.

It is an absolute fucker.

The enormity of what is happening to us also hit me with full force. We are living a parents worst nightmare. When people hear our story, they thank god it isn’t them. We are going to lose our child and worse than that, we are going to watch her slowly slip away from us. I cannot even comprehend how enormous this is but the last few days have left me with a permanent lump in  my throat, constantly on the brink of tears and without a single positive thought to break out of my moroseness.

I hate this feeling. I hate being sad and I hate not being able to see a light. I know that I have every right to feel this sad and I know that I should ALLOW myself to feel this sad because it is all part of the grieving process but fuck it all to hell and back, it is bloody shit.

Chocolate has helped. As has the kindness of friends and family. I do know how lucky we are to have so many amazing people in our lives. We, 100%, could not do this without you all. My positive will return but in the meantime, I will allow myself to wallow about in this self-pity festival for just a little bit longer.


The very lovely Palliative Care team from the Royal Children’s Hospital came to see us yesteday afternoon. They are another addition to Team Tilda and will assist us throughout this journey – from sourcing equipment, liaising with other services and generally being another support. We talked about equipment that we need for Matilda. Most immediately is a bath chair. She loves her bathtime but it is becoming more and more difficult to support her in the water (and very bad for our backs!). We also talked about a new seat for her that might support her better.

I have also been speaking to our wonderful Speech Therapist from Glenallen about Matilda’s eating and will be arranging for a videofluoroscopy swallow study to get a better understanding about what is happening when she eats. I am coming to terms with the PEG. I actually think that it will be of great benefit in many ways, not least of all, making mealtimes less stressful. It is an emotional decision though, and one I have not come to lightly.

Matilda’s New Wish!

In much happier and more exciting news, there has been some decisions made regarding Matilda’s new wish. It is yet to be finalised but will hopefully involve as many of you as possible and will be a wonderful day to share – I ask that you tentatively keep the morning of Saturday the 26th November free with details to follow!

To end this rather sad and sorry post, I would like to show another video of Matilda that I love. It was taken up in Darwin when she was about 2 1/2.  She is a crankypants here too but as is her nature, she manages to snap out of it. As she will now. As I will now.



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