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.



7 Responses to “Feels like spring”

  1. Jo Weller May 9, 2013 at 8:26 pm #

    Tilda looks gorgeous in that fabulous chair. Sorry to hear about the Bells. I’ve nabbed the car so hope to see you Saturday, if you’re still up for it..? Will bring cake xxx

  2. Juliet May 10, 2013 at 8:24 am #

    The chair and Tilda’s manicure are wonderful! I do hope the Bell’s (how UTTERLY UNJUST!!!) is of the mild, short-lived variety and you get over it SOON. Getting more sleep can only help!

  3. Margaret black May 10, 2013 at 4:57 pm #

    Dear Lauly
    Tilda looks so sweet. But how unfair for you to get Bells Palsy. I do hope it is not too painful.hopefully you will get over it quickly.
    Lots of love from me and Bill (now in Spain)
    Margaret xxxx

  4. Didi May 12, 2013 at 3:39 am #

    I’m glad to hear alls well with both Tilda and Maggie. I know it’s hard when she goes to the respite program but as long as she is happy all is good. Tilda looks splendid and comfy in that chair. Sorry to here about you getting Bell’s palsy but hopefully it will run its course soon and will leave you soon.

  5. Louise May 12, 2013 at 1:06 pm #

    I was sitting and looking for more and more info on Battens Bloody Disease and came across this Blog! I had NO idea it existed! I have been reading and crying for over an hour!Laura you are an inspiration!! Thank you so much for sharing all of your journey with us. I am certainly the lucky one, to be priviledged to teach Tilda and to be involved with her brave and beautiful family! She is such a treasure and I thank you for trusting us with her care. Stay strong and know that you are not alone. Lots of love, Louise

  6. cally berryman May 13, 2013 at 6:38 am #

    Dear Laura,
    You poor darling with Bells. Is your smile misshapen? Do you have trouble eating and speaking? Hopefully Bells will improve. My son had Bells after his stroke and it improved a great deal.
    Thank you for the photos of the brilliant Tilda.
    love to you all- you are in my daily prayers.
    Love Cally Xx


  1. July already | teamtilda - July 6, 2013

    […] recently. Unfortunately, I have been dealing with my own health issues. My Bell’s Palsy incident turned out to be not quite so straightforward.  After visits to the gp and neurologist as well […]

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