Not always roses and sunshine

11 Dec

I woke up sad today. Tilda was smiling as usual but it failed to arouse the usual good cheer. I watched her as, just like every morning, she flopped around the bed. A gargantuan effort to get to sitting position followed by uncontrolled falling. Sometimes on my head. I keep one hand on her chest to keep her upright. Falling does not deter. More of a struggle to standing, holding on to the the bed head. Success celebrated with jumping. Followed swiftly by falling. I grasp at her pyjamas to stop her falling off the bed. Cuddles and smiles. Inside, I am so sad. I get frustrated. Stop jumping. Knowing you will fall. Stop struggling. Don’t stop struggling. Don’t stop fighting.

I logged on to Facebook and found that another child in the Batten community passed away this morning. Passed away. Earned her angel wings. Left us. Died. Stopped.

A confession. Whenever I hear of a Batten child dying, I become quite obsessed with finding out as much as I can. I search for clues. Watch videos on Facebook. How old were they? What type of Batten did they have? At what stage? What were they like just before they died? Are they similar at all to Tilda? Could she be next?

There are no answers because every Batten child is different. Whatever I do, I cannot stop this. There is no cure. There is no miracle. There is only looming and sometimes, like today, that looming becomes too much to bear.

So I have done some cooking. Thank you to Mum for the stew recipe – Tilda tried, tested and approved of. I am not a cook at all but there is something very comforting about chopping onions and carrots.

We are having a quiet day. Matilda is watching enormous amounts of television. She is still in her pyjamas. That’s ok. She is not sad. She is not in pain. She is extremely content. Perhaps a bath later.

Perhaps I will bake a pie.

Neurology appointment later in the week. Before that, a get together with the mums of Tilda’s class. Including the mums of Charlotte and Dylan who passed away late last term. It will be nice, and hard, to see them. I am sure there will be lots of tears and hugs.

Tears and hugs.

Advertisements

13 Responses to “Not always roses and sunshine”

  1. Cally December 11, 2011 at 2:38 pm #

    Dear Laura,

    How beautifully you put it- it is in the small day to day things that define our happeiness. The making of the stew, the watching TV in your pyjamas, being surounded with love.
    For the moment holding on to the precious now and being mindful of the minutes ticking away. How gently you put it and with so much love.

    Yes hearing of others with Batten’s dying is a horror – and I am not going to place platitudes at your feet. It must be hell.
    But there will be time for the hell later.

    Just for today continue enjoying and sharing with us the exquistive magic that is Tilda.
    She has done her magic on us all and held up to the light what is important and what is not.
    We are learning through Tilda- what a teacher!

    Love Cally Xxx

  2. jackie December 11, 2011 at 3:42 pm #

    Hugs, tears & kisses all being sent your way! Cally beautifully said and so true! Tilda our teacher forever! x

  3. Nancy Morrison December 11, 2011 at 4:00 pm #

    ohhh tears here too and sending mu hugs to you ❤

  4. Irene Davey December 12, 2011 at 6:43 am #

    Your sadness is as palpable(?)as our inability to hold you all safely keeping you all from death. Hugs and tears are good though as is lots of chocolate and ducks on the roof!

  5. Juliet December 12, 2011 at 7:51 am #

    The sadness is as inevitable as your happiness in Tilda’s happiness. I am glad that cooking provides some comfort, just as television provides enjoyment for Tilda. I can only imagine the heartbreak of watching her irrepressible courage and optimism as she tries to continue to do things she enjoys, but am so glad that she continues cheerful, adventurous and pain free herself.
    I am so glad that you are able to go to the mothers’ get together. Heartbreaking as it will be, it is wonderful that you are all able to support each other. Love and kisses to all three of you.

  6. Judy McKinnon December 12, 2011 at 12:56 pm #

    Dear Laura,
    Your Tilda blogs are the first thing I read when I open our emails and once again you leave me breathless (and teary) with your wonderful ability to reach out to us all. While wishing we could do more to ease your pain we can only say to you that we are so touched by your story, so impressed to see you and Simon and Matilda with each other at the wonderful Fun Park day and so sad to see the heartbreak you are having to endure. Thinking of you on a not-such-a-good-day.

  7. Daryl Linnane December 12, 2011 at 1:14 pm #

    Laura……your pain , your sadness and feelings of helplessness in the face of Battens are all so palpable , so understandable, so wretchedly “normal” that we grieve for you and with you.

    But you have shown us just how resilient and determined the human spirit is. And so too with YOU now . I’m sure the scent of the roses and the warmth of the sun will soon return and you will again enjoy the moment and rejoice in all the wonders that Tilda is and gives . You are all in our thoughts and hearts….love Daryl

  8. Carole and Garry Laird December 12, 2011 at 2:32 pm #

    A big hug from across the seas.

  9. Ken and Wendy Brown December 12, 2011 at 2:53 pm #

    Hi Laura,
    Sunday must have been a very tough day for you. Your love and committment to Tilda is powerfully evident.
    We send our love.

    Ken and Wendy

  10. JessB (Kate's friend) December 13, 2011 at 11:01 am #

    Just wanted to give you a virtual hug and say I’m sending happy thoughts your way.

    And Peter Pan’s You Can Fly is perfect for this time of year: “Think of Christmas, think of snow / Think of sleigh bells Here we go! / Like a reindeer in the sky / You can fly! You can fly!”

    Thinking of the pictures of Tilda flying on that roller coaster… 😀

  11. M December 13, 2011 at 1:36 pm #

    i am thinking of you so much. Cannot wait to see you all… x M

  12. Benita crocker December 15, 2011 at 7:36 am #

    Ohh mate. We are all out here with you – giving you and Tilda the biggest collective hug we can – squeezing tight and hoping today will be a bit better. Keep writing love – whether you are feeling good, bad or indifferent we all want to hear and share this with you. xo

  13. Anne Bunting December 15, 2011 at 12:07 pm #

    Dear Laura,
    There is so little we can do except to thank you for your generosity in sharing all your experiences with us and giving those of us who do not see you often an insight into your life and a way of knowing Tilda – your strength, resilience and wisdom are an inspiration and I hope that this will get you through the bad days.
    Lots of hugs and love Anne

Leave a Reply

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

WordPress.com Logo

You are commenting using your WordPress.com 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 )

Google+ photo

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

Connecting to %s

%d bloggers like this: