Quality of life

21 Oct

When you have a child with a terminal illness, the term ‘quality of life’ gets bandied about a fair bit. What does it mean? Somedays, if I were to think about Tilda’s day to day living, I would say that her quality of life was, to be perfectly blunt, pretty crap. She can’t move, can’t tell anyone what her needs are, suffers from endless seizures that do god knows what to her brain, can’t even enjoy the taste of food.

It is those days that I dread – where I focus on what she can’t do. What she has lost. What has been so cruelly taken from her and from us. It is this way of looking at her ‘quality of life’ that makes me almost long for it to be over for her. It is this way of looking that makes us live a life of waiting. And it is horrible.

To combat that, I turn it around and focus on what she CAN do today and on the good things that surround her. This way of looking at her ‘quality of life’ shows something quite different. A life worth living for as long as possible.  She is surrounded by love, she can feel the touch of those who care about her, she can hear our voices telling her how fabulous she is, she can hear music and her favourite tv shows. She can get engulfed in a hug, she can feel the sun on her face, the water on her back whilst swimming and the sand in between her toes at the beach. She can smile and she can laugh.

Oh boy, can she laugh! We had a weekend full of smiles and laughter. And it is a whole new face to get used to with her top front tooth finally falling out!

Gappy Tilda!

 

 

 

 

 

 

 

 

 

 

So this is the quality of life I will focus on for now. A life of cuddles, hugs, smiles and laughter.

Sounds pretty good to me.

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8 Responses to “Quality of life”

  1. kyliesmith318 October 21, 2013 at 4:15 pm #

    And that, dear sister, is why you are so awesome!!!

  2. morrisonpix October 21, 2013 at 5:52 pm #

    Beautiful observations, I’m also a firm believer of being grateful each day for the little things.
    With the nicer weather surely on its way, consider a photo shoot with both girls. Compliments from Heartfelt and me. ❤

  3. karla akehurst October 21, 2013 at 8:28 pm #

    So inspiring your words are laurs. Love the toothless grin!!! And so beautiful to see little Maggie already aware of her role to be with her big sister xxx

  4. Cally October 22, 2013 at 5:34 am #

    Thank you for this blog. You are so lovely. xx

  5. Danielle x October 22, 2013 at 7:10 am #

    Great post! Let’s absolutely focus on those things. I personally am in awe of her pretty face. Those eyelashes, the perfect freckles across her nose… I could look at her for days! 🙂 So I will focus on that. Love you both xxx

  6. Juliet October 22, 2013 at 7:14 am #

    Wonderful to know that you are all, Tilda included, getting as much enjoyment of life as possible from what you rightly describe as an unspeakably crap situation.The interaction between your two gorgeous girls is lovely.

  7. benita crocker October 22, 2013 at 7:45 am #

    Love that laugh Laura – what a great giggle xo

  8. Katrina Varcoe-Cocks October 29, 2013 at 4:04 pm #

    Sending a whole lot of love your way and a big hug from all of us, all at once.. HHHUUUUGGGGG! Love you lots. Treenxx

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