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The greatest gift for Grace.

  • Our beautiful girl

      3 August 2022
    Posted by: Jessica Paterson
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    To the mothers and fathers like me who mother children with medical fragility:

    I commend you:

    ~ for all of the times you got up in the night to soothe an inconsolable child. Neurological irritability is the devil, making a mockery of us every single time we rock and comfort our children in vain.

    I acknowledge your patience:

    ~ for all of the times you have been physically exhausted and injured from lifting and carrying your child

    ~ for all the times you didn't curse when you dumped stomach content on yourself or the floor

    ~ for all the times you wanted to scream but instead held it together again and again and again

    I honour you:

    ~ for your determination in always finding solutions and answers to seemingly insurmountable problems (or at least never giving up on finding them)

    ~ for creating a safe and happy environment for your other children in spite of your fears and worries

    ~ for managing a home or a job or a friendship or a marriage on top of all that you manage

    ~ for courageously facing a future that is bleak and still maintaining a sense of hope....no matter what

    I praise you:

    ~ for finding strength and resilience that I know you had to dig deep to unearth

    ~ for finding humour when laughter seemed counter-intuitive

    ~ for weeping in the quietest moments when you would rather read a book or shave your legs but instead you tend to your grief

    I salute you:

    ~ for making this unique kind of mothering look effortless

    ~ for bravely rising up again and again even when throwing in the towel feels like a viable option

    ~ for taking the new moms under your broken, battered wing so that your wisdom may make their journey a little less harrowing

    I bow to you:

    ~ for caring for your child through tests, trials and experimental drugs

    ~ for sitting vigil knowing that your child's days were coming to an end

    ~ for the unimaginable broken heartedness you endured upon your child's death

    ~ for waking up each morning and continuing to live without them

    Today I celebrate all of you:

    ~ for demonstrating the meaning of MOTHER which comes down to unconditional love

    ~ for being the incredible mother that you are with all of your strengths and weaknesses, talents and imperfections.

    May you fully understand the sacredness in fiercely loving your child without ever feeling little arms around your neck in a hug, hearing the words "I love you" or receiving the gift of hand picked dandelions.

    I am honoured to be in your company.

    Copied from another amazing CF mum ❤

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  • Birthday

      10 July 2022
    Posted by: Jessica Paterson
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    We celebrated Graces birthday with family and friends yesterday. Grace loves Harry Potter like white on rice. So we all dressed up and really got into the spirit of things. The girl in the picture with Grace is her bestie from before they knew they were friends. She has stuck by her side through everything and we are so blessed to know Grace has her by her side for life.

    Moments like these have always been special, but this one is extra special. Making amazing memories like this is priceless.

    And when God made you, he said, "When she'll conquer her demons, I'll stand right beside her."

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    • 10/07/2022 by Jules

      Wonderful ❤️

  • Grace's NG Tube

      10 June 2022
    Posted by: Jessica Paterson
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    Our beautiful girl, had the tube placed that she so much hated the thought of. But we have come to the point that she can no longer maintain her weight by eating so we need to supplement it somehow. I never knew it could be so hard to help someone understand their mortality, especially if it is something in others eyes so tiny. Grace in her mind would have preferred to have an invasive gastrostomy over a tube. I will never admit to knowing how she feels and her reasons, but this one has left me stumped.

    I will not be another flower, picked for my beauty and left to die. I will be wild, difficult to find, and impossible to forget.

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