Archive | May, 2013

Back to school

27 May

Tilda went back to school today, she is looking and sounding a whole lot better which is a great relief. Reports from school say that she was settled and smiley and alert most of the morning. And certainly she came home looking very bright eyed.

Her exquisite laughter is something I have been missing so I was absolutely thrilled when, as I was trying to make Maggie laugh, I heard one of my favourite noises.

She’s back!


Feeling better

24 May

Tilda is definitely on the mend. She seems to be responding well to the antibiotics and I even got a couple of smiles yesterday. Well, Dora and Maisy did anyway! We had two lovely physiotherapists come out and do some exercises to help clear her out. They will be back today to show us the moves and we will incorporate it into our daily routine. We may also now require a suction machine to help get rid of all the gunk and make her more comfortable. I am not sure how she will go with this but it is worth a try.

I have to say that I am feeling a bit stressed and overwhelmed at the moment. Maggie is not sleeping well and I am finding myself a bit lost in how to set up a better routine for her and for me. I remember that Tilda was very similar as a baby but had forgotten just how stressful it can be. Why do small babies NOT want to sleep? I don’t understand. I dream of a night away in a giant bed with crisp, clean sheets. A full night of sleep. Waking feeling refreshed and energised. One day. In the meantime, I will need to work on some strategies to keep my sanity. A Maggie smile has amazing restorative qualities as does a Tilda one so I will hang on to those and ride this wave out. I do know how fleeting it all is.


Tilda update

22 May

Thank you for all the well wishes for Tilda. Her cough continues to sound pretty nasty but her colour is pretty good and she has had no more fevers. We have a physiotherapist coming out tomorrow to do some chest physio with her and to give me some things that I can do to help alleviate build up in her chest. We then have a nurse coming out on Saturday to check her. This is all through the RCH’s Hospital at Home service which is wonderful.

Thankfully our house is lovely and warm so we are all just taking it easy. Tilda is cosy and comfy in her bed, sleeping or watching Dora.


Many thanks. Xoxo

Chest infection

21 May

We have just come from the hospital as Tilda has not been very well the last few days. She has a chest infection but thankfully the x ray shows that it is not as bad as the dr originally thought. We chose not to be admitted and are heading home with antibiotics. We will also be getting some assistance from the Hospital at Home program who will send out nurses to take obs and do some chest physio.

We will keep you updated.


Random Bits and Pieces

15 May

How Tilda got her name

Simon had the name Matilda picked out from the get-go and as soon as I heard it, I loved it. I never thought she would be a Tilda though. Matty perhaps, or Tilly. It was her very treasured cousin Charlie who coined Tilda for her. Charlie is only 10 months older than Tilda and when he was small, he called her Toeda! Which eventually became Tilda and has stuck fast. Some people do call her Tilly but for me, it is now hard to think of her with any other version of her name. She is my Tilda through and through.

How is my Bells Palsy

Much better, thanks for asking! The steroids and antivirals as well as time seemed to have played their part and I am pretty much back to normal. I had a very mild version of it thankfully, only some slight drooping! My MRI was clear and I should make a full recovery with no recurrence. I am led to believe that being run down could have caused it and am amazed at the human body’s ability to respond to things as well as to heal. How I wish that Tilda’s symptoms could be so readily dispensed with.

Be careful what you wish for

A few posts ago, I was lamenting the noises that Tilda makes. Now, she is quiet which is cause for heart swell. No vocalisations, hard to get a smile, and having increased shakiness. We have reduced one of her medications so it may be worth re-introducing it to see if it makes a difference. She doesn’t seem unhappy which is good but I would love very much to hear her voice again. I miss her.

I miss her

I miss my Tilda. I miss the little girl she was. I love her with all my heart now but MY Tilda seems very far away. The little girl who laughed and sang, who ran and played even the Tilda from a year ago who was still so infectious with her joy. This Tilda before me is apart, removed and sometimes when I cuddle her on the couch and I don’t know whether she knows who I am, my heart cannot take it and I have to turn away.

I really really hate Batten Disease

Sometimes I spend  time on the interwebs reading blogs and following links. I read inspirational stories about people overcoming adversity and heartwarming accounts of those that beat the odds. I love them all. But what they also do is highlight to me just how fucked up Batten Disease is. Not for us the tales of beating a disease, not for us even the tales of learning how to live with a disease. We have a gut wrenching tale of loss upon loss. I watch my Tilda retreat into herself and cannot do anything about it except love her with every fibre of my being. And ache with it. And then I have to say goodbye to her and work out how to live in a world without her.

That time

I don’t know when that will be. Sometimes I want to know desperately. Sometimes I want it to happen sooner so it can be done with. Most times I want it to never, ever happen and if I pretend it won’t, maybe it won’t?

Writing as venting

Please know that writing for me is an extremely cathartic exercise. Most of the time, a sad post means that I am already feeling a bit better because I have written it all down. I thank you so much for reading and commenting and caring, it means the world.


Feels like spring

9 May

Today Melbourne delivered a beautiful sunshiny day which lifted my spirits and put a spring in my step. I admit that I have been a bit fed up and cranky the last few days so it is nice to feel cheery again.

I have been diagnosed with Bell’s Palsy which is more disconcerting and annoying than anything else and today had to have an MRI to confirm. I won’t know for sure until Tuesday but it looks like it is just Bell’s and it will run its course with the help of some antivirals and steroids. Dealing with doctors and hospitals for myself has been as frustrating as it often is when we are dealing with them for Tilda and my MRI experience made me appreciate in a different light what she has been through and how brave and inspiring she is. She has been poked and prodded and had to endure horrible medications and for the most part has done it all with a smile. A true warrior princess.

The last couple of weeks have been up and down. Tilda went to Very Special Kids for 4 nights which was nice in lots of ways and hard in others. They looked after her absolutely beautifully – even had a little beauty parlour session where they painted her nails!

Tilda's Beautiful Nails


She looks somewhat unimpressed in this photo but I do believe she thinks they are very pretty! It is always hard to let her go though, I found walking past her room and seeing it empty of a night quite tough and knowing that Nicole was feeling that times 1000 for Jack made me ache for us both.

Thankfully her sleeping seems to have improved which is wonderful and Maggie, after a few rough nights also now seems to be sleeping a bit better too! The difference a reasonable night’s sleep makes is beyond words! A huge, gigantic thank you to my beautiful parents for taking her away for an hour or so the other day and letting me have a much appreciated nap. I must also thank Simon who has organised his shifts so that he can do the getting Tilda ready for school routine which leaves me able to snooze with Maggie.

Grief about Jack is ever apparent and will no doubt  be an ongoing part of this journey. I was fortunate to meet another lovely Batten mum today who lost her gorgeous Jai at the age of 7 1/2, 7 years ago. It is quite the extraordinary thing to be able to share and though we really wish we all had never met, we believe that these friendships are the one shining light to come out of an unbearably shitty situation.

Tilda is well at the moment. She is quiet but seems to have a light in her eyes that I haven’t seen for a while. They mentioned at VSK that she smiled at them all morning and I couldn’t quite believe it as we have not seen a lot of spontaneous smiling in recent times.  Since coming home though, I have seen it for myself, this beautiful half smile that seems to light up her face. When she comes home from school for a cuddle, when she is lying in the amazing papasan chair that Simon got me for my birthday (thanks again babe!!), it is lovely to see and we will hang on to it for as long as it lasts.

Happy in the papsan chair


Much love to all and thank you once again for your beautiful messages of love and support.


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