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.

 

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22 Responses to “Random Bits and Pieces”

  1. Sheila Labo May 15, 2013 at 3:17 pm #

    Sending love & energy your way. Wish I really could! Hoping & praying for Tilda moments for you! Hugs……

  2. FiFi May 15, 2013 at 3:21 pm #

    Sending you lots of love honey, thank you so much for sharing your thoughts. Love you xoxox

  3. Mary Anne Schmidt May 15, 2013 at 3:29 pm #

    I was just thinking of your family tonight. Hugs to all of you! xoxoxo

  4. Jo May 15, 2013 at 3:30 pm #

    Love you, you fabulous lady. Your posts alway talk to my heart. Cuddles to you all. xx

  5. jackie May 15, 2013 at 3:33 pm #

    Alway always in my thoughts, thank you so much for always sharing, I just wish along with everyone else this wasn’t happening to you or anyone for that matter. Thinking of your friend Nicole as well… Sending big hugs to Tilda and the rest of you, give a big hug to Simon for me xx

  6. Kell May 15, 2013 at 3:47 pm #

    I love your writing Laura. It always comes from the heart and let’s us share even just a little bit of what you’re going through. I can’t tell you how many times I’ve cried with you over your posts! Know that we’re always thinking of you and sending big hugs xx

  7. Kat Varcoe-Cocks May 15, 2013 at 3:57 pm #

    Hey Laura. I wish I could do so much more than read, comment and care. Thank you for sharing. Lots of love treen & boys

  8. Margaret black May 15, 2013 at 4:05 pm #

    So pleased your Bell’s palsy has settled. You write about your feelings so beautifully that we can feel so strongly about your emotions. We are so lucky to be able to follow your journal and so sad we can do nothing to help you stop this terrible trip.
    Lots of love
    Margaret

  9. Louise May 15, 2013 at 4:07 pm #

    Big hugs Lovely Laura xxxx

  10. Alicia Brown May 15, 2013 at 6:38 pm #

    Laura I just want you to know that although i don’t very often comment on your posts and blogs, you and Tilda are often in my thoughts and i always read your blogs that come via my email. I find them very inspiring and encouraging they make the world a more intimate place. I hope to meet you all some day when i visit Melbourne either for a Battens Family Gathering or just a regular family visit. It’s really sad to think i will never get to meet the happy giggly Tilda that i first started reading about some time ago (I don’t remember how long ago it was as time just rolls along and becomes a big blur). I wish that i could say that the awareness that Kiaana and I are working on spreading would directly benefit Tilda, but all i can honestly say is that it may help fund some of these family gatherings that will give us the chance to meet and make some face to face connections. For me that is a saving grace, but i ish it could do such more for Tilda. Much love Alicia

  11. karla akehurstkarla May 15, 2013 at 7:58 pm #

    Please keep writing Laursy as often, as little, as angry, as frustrated, as joyous as you feel. I am so removed from you in distance and more importantly, in fully understanding what “a day” in your life is. Tell me if you would. Like a timeline just one ordinary day with Maggie, Tilda and Simon.
    I love you and it aches to hear your pain. But I need to “hear” you because for me it means you are having some ‘Laura time’ and that my darling, is something you deserve. We speak of Tilda often (every time I wear my sparkly shoes shirt!!) and sometimes the boys just randomly ask how she is. Those little ones are more in tune then we know or understand!
    Moments as simple as they may appear to an outsider are precious and you remind me to acknowledge that. THANK YOU XXX

  12. Jac May 15, 2013 at 8:01 pm #

    Oh Laura. How you are doing this living-with-stuff-every-day thing is beyond me.

    Everyone who reads your catharsis just wants to take all of this shitty shit away from you. If only we could.

  13. Dianne kanaan May 15, 2013 at 8:46 pm #

    Hey Laura,
    I just want to give you a hug….. Missing & thinking of you always.kisses to u & the girls 😘

  14. Mandy Bruton May 15, 2013 at 11:42 pm #

    Laura – You, Simon and everyone that is with you in this journey are truely inspirational. I was nodding my head as I read that writing a sad post means that you are already feeling a bit better. It’s amazing how writing helps. I know nothing will ever take away the pain/anguish/anger/frustration you are feeling but was happy to read that the support you have means the world – knowing that so many people care and support you is obviously some sort of comfort. Constantly thinking of you guys!! – Mandy Bruton (nee ASHBY)

  15. Juliet May 16, 2013 at 7:48 am #

    I am so glad that posting your feelings brings some relief, and very glad that the Bells Palsy is coming good. My heart goes out to you at the news of the changes in Tilda – at least, as you say, she does not seem unhappy and that is good, but we all know THERE IS NOTHING REALLY GOOD ABOUT THIS!

  16. Benita May 16, 2013 at 8:46 am #

    Hey lovely Laura, keep writing. It’s great to know that it gives you an outlet and for the rest of us it is a connection and insight that we wouldn’t otherwise have. I LOVE the way you write – so honestly, no bullshit, happy when you are and shitty when you are too. It lets us share a tiny tiny tiny bit of what you are going through with you and that is your gift to us. Love you xoxox

  17. Carole and Garry Laird May 16, 2013 at 5:15 pm #

    Laura, your writing is a wonderful gift. Most importantly if it helps then keep doing it.
    So glad to hear you are recovering from the Bells Palsy.

  18. Daryl Linnane May 17, 2013 at 8:29 pm #

    Hi Laura…….so pleased to know the Bells Palsy is settling down. Your writing is beautiful, sensitive, insightful but by far most importantly you say it is “an extremely cathartic exercise”. My hope for you is that you can always find time to keep it up …….that it is your time for you … or…..that when you choose , you allow others to share and feel your pain, sadness , anger and the anguish that is your journey with Battens even though we are so powerless to help in the face of this cruel disease . Always thinking of you …..Daryl

  19. Di White May 19, 2013 at 3:53 pm #

    Yes I do understand how valuable it has been for you to share the ups and downs with us. Just as I know it will one day become an extraordinary document which you may feel confortable to share with a much wider readership. My love as always. Di XXxx

  20. Karen Nichols May 22, 2013 at 2:09 am #

    Thinking of you all today and often. I appreciate that you can write all of what’s in your heart ( or most of it anyway). LOVE to you.

  21. Heather Jackson May 23, 2013 at 3:24 am #

    I love you!

  22. Shayne Tanner May 23, 2013 at 9:25 pm #

    Hi Laura,

    this beautiful blog is such a wonderful place for me to come, and check-in on an extremely tough story, and to hear from a really beautiful person.

    All of you are in our thoughts, always.

    Shayne

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