23 Sep

When we first found out about Matilda’s condition, after coming home from the neurologist, I went outside and smashed a number of our useless figurines that we seemed to have collected over the years. It felt pretty good. Since then, I haven’t really felt much anger in regards to what is happening. Until the other night.

I have joined a Facebook support group – amazing parents from all over the world who are going through what we are going through. It is wonderful to be able to chat to people who understand but it is also terrifying because a lot of their kids are far more advanced in the disease than Matilda and it is like looking into her future, which is not that great a place.

A lot of the parents have put together beautiful videos of their kids – photos showing them progress from babies to toddlers and then having EEG’s, in a walker, in a wheelchair. It is heartbreaking. Watching one of these videos, I was suddenly struck by a fierce and overwhelming anger. It isn’t fucking fair. It isn’t fucking fair that these kids go through what they go through and that parents and loved ones have to watch. These kids who start out just as everyone, with the world at their feet to then detoriate, and detoriate until death. What the fuck is that about?

And then, to fuel my anger, I was listening to the radio and heard a news segment that scientists in Queensland were working hard to develop a strawberry that tasted like bubblegum. Really? This is what we need in the world?

I know anger is a fundamental part of grief and I know what I am feeling is perfectly normal and perfectly healthy. I do think that I will need to channel it somewhere and I am gearing up to start to become more involved with the  Australian chapter of Batten Disease Support and Research Association. Currently, I believe, as they are linked to the US association, much of the money raised here goes overseas. I would like to see research happening here. I will be coming more and more active in creating awareness and promoting BDSRA over the next few months. It is a way to use my anger to DO something, however futile it might be for Matilda. I will use my anger for good, not evil.


We had an appointment with our neurologist yesterday who was very pleased to see Matilda looking so cheery though slightly alarmed by her propensity to do roly poly’s into her desk. It was more of a catch up meeting – letting her know how Matilda has been doing and where we are with her weans etc. I don’t really want to upset the balance that we have at the moment, so am reluctant to introduce any new medication. Our neurologist agreed and we are continuing as we are – slowly weaning the topomax and keeping everything else as is. We have an appointment with our pediatrician on the 5th Oct to talk more about feeding but I believe we are still a way off a PEG feed. Tilda’s weight has gone up slightly and she is doing pretty well with her eating.

I am also very sad to report that another one of Matilda’s classmates passed away yesterday morning.  Charlotte was 8 years old and had an undiagnosed condition which left her unable to walk, talk or even smile. My thoughts are with her family and with Matilda’s wonderful teacher Andrea, who has now lost 2 out of her 5 students in the last two weeks. I am glad for her that it is school holidays after today and she can take a very well-earned break.

Thank you all again for your messages and comments which I read avidly and sincerely appreciate.



10 Responses to “Anger”

  1. Kylie September 23, 2011 at 11:20 am #

    I often look at ridiculous amounts of money spent and wonder why….yesterday on the news there was a story about how regional hospitals can’t afford to transport the bodies of people who want to donate their organs…….but they’re spending x million dollars on upgrading a stand at the MCG……why????? it’s a crazy mixed up world.
    Looking forward to spending lots of time with you and Tilds over the holidays

  2. Danielle x September 23, 2011 at 11:43 am #

    One word on ridiculous amounts of money being wasted in Melbourne – MIKI! (Sorry Ryan James).
    The world is crazy, & the more I try & work it out, the more frustrated I become. Thankfully my darling Laura, there are people like you that exist & balance is out!
    You are not alone in this fight. You let me know what you would like to do, & I am there. We are pretty good at trivia nights! 🙂 Awareness is definately the key. I would imagine most people within your circle (& mine) had never even heard of Battens until recently.
    On a positive note, how lovely that Ingrid got to see the happiness that Matilda radiates when she does her famous roly poly’s! 🙂
    Happy Friday my beautiful friend.
    Love you x

  3. Diane September 24, 2011 at 9:21 am #

    Thinking of you constantly. I’m not religious, but always amazed at how life pans out for most of us, eventually finding the ‘place’ we should be. I have no doubt you are capable of doing seriously worthwhile things for humanity and the fact that your skills are being honed in the direction of Battens research is a remarkable turn of events….as Shakespeare said “there’s a tide in the affairs of men, which taken in the stride lead on to greatness”. (pretty sure it was Sharespeake)…not the solution to your sadness at the moment, but with every day, another corner to be turned. Keep your chin up! Hugs Di xx

  4. Daryl Linnane September 24, 2011 at 1:11 pm #

    Hi Laura…….my first comment, although I have been following your journey with much sadness for you, Simon and family for some time now , most recently via this blog which your mum gave me.

    Mathilda is just gorgeous and you Laura are an amazing and inspirational mother ( and a great cake maker too !! ) through these challenging and difficult days. I encourage you to “go” with your “anger” and take Tilda’s and BDSRA’s cause wherever you can find a platform , including the public arena of for eg radio, politicians etc. AWARENESS can open doors !

    Our thoughts, love and support are with you all……..Daryl Linnane & Co.

  5. Carole and Garry Laird September 24, 2011 at 7:19 pm #

    Laura you have every right to be angry and must wonder why this is happening to you Simon and Tilda. Putting this anger into making others more aware of this condition is a great idea.

    Support groups are good in that you are talking to people who can understand some of what you are feeling and going through, unfortunately it can also be confronting as you have found out.

    I was so sad to read about Charlotte and feel for her family.

    Our thoughts are with you all.

    Carole and Garry

  6. Cally September 25, 2011 at 6:30 am #

    It is unfair, bloody unfair- I agree totally.
    A gorgeous girl like Tida deserves and should have all the good things in life.
    And it is healthy to have anger to rage against the unfairness of it all.
    And, you are capturing the good things, the party, the cake the trampoline etc.
    The ripple effect of Tilda’s magical life has touched us.

    How I wish I had a magic wand that would fix things for Tilda now.

  7. M September 25, 2011 at 7:04 pm #

    Hello my darlings,

    it has taken this long to work out how to make a comment! I mean I keep making them but you can’t hear me.

    I love how much you say fuck in this blog…! It is and Tilda is a &%#@*& legend. Do you remember the day she saved that pig faced turtles life???

    ok, too much saying &%#! for an emotional blog…

    Love ya. x m

  8. Jan Marshall September 26, 2011 at 5:16 pm #

    Laura you are truly inspirational! I read your updates regularly and have yet to get to the end without shedding a tear. So much for a fair and compassionate God!! I wish you a multitude of happy, cherry Tilda days.
    Jan Marshall

  9. jackie September 26, 2011 at 7:42 pm #

    Do you know who really pisses me off and makes me angry…Brynne Edelsten. She should do something important with the money she married into. I was listening to her this morning about how she spends $15,000 on her brownlow dress and she isn’t even a WAG!!!! Shallow shallow shallow. Thoughts are with you as always x

  10. Kim Baldwin September 27, 2011 at 8:58 am #

    Hey Laurs,

    Once again I am sitting at my desk reading your amazing posts and tearing up, each and every time. It’s hard to even fathom that this is happening to you guys, unfair is to light a word to describe it. Unjust, unimaginable, fucking well fucked!!

    Ryan and I are willing to help in any way we can to raise awareness, cashola, the works. Love you all, you are an amazing phenomenal family.

    Kim xoxoxo

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: