Fiona Midori King

Fiona Midori King

Hope 4 Fiona

My Sweet Angel




I love the way her face looks when she is sleeping- so sweet, so angelic.  During the night I spend hours just lying next to her, caressing her face and body, combing my fingers through her silky hair and telling her how much her mommy and daddy love her.  


I find myself in a very challenging position.  As crucial as it is to relish in the moments I have with Fiona as she is alive and still fighting for her life, I also find myself needing to prepare for what is predicted to come.  I tell myself I am not ready to let her go.  I cradle her sweet face at night and try to absorb every detail of her embodiment.  Even now, knowing what her condition is, I find myself so sad at times because it may not always be like this, and I fear that idea of things changing for the worse.  Honestly, I still cry over the fact that she even has GM1 and petrified at what GM1 will do to her.  I don’t want to lose her.  The thought becomes more unbearable with each passing day because with each day my heart becomes more dependent on her.  The more time I spend with her, the more my love for her grows.  Just the mere thought of life without her brings me such gut wrenching pain.  I know that she can’t stay like this forever, but I’m just not ready for her to go, not soon, not ever.


But life goes on. It just does. Even though I have my moments of breaking down (usually when I am alone), I don’t let them consume my life … at this point.  I do live with a constant knot in my stomach wondering about such questions like When will it happen? What will she look like? How will we live on afterwards?  Even though our family still lives our daily lives as normally as we can, those sorts of questions are always on the back of my mind.  It’s extremely difficult not to wonder about the answers to these questions, but all I can do is my best to cope with such a painful situation.


I think of just how amazing Fiona is and how much beauty and happiness she has brought into my life.  She has brought me closer to God and strengthened my faith. Fiona has opened my eyes to such wonderful feelings and new insights into life.  Thousands of times over, she has warmed my heart and made me smile.

She is the missing piece I didn’t realize I needed to complete our family. Fiona gives me a feeling that’s so inexplicably good and warm.  It’s undying. It’s powerful. It’s love. Pure, love!




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