Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Wishes, Hopes and Dreams




I was in the kitchen baking cookies while Fiona was near me and it was just the two of us. Just for a second I could have sworn that I heard little footsteps- the sound a toddler’s foot-steps would make. I imagined Fiona being able to help me make cookies. I was baking and laughing as she splashed her hands in the flour, smiled at me, looked into my eyes and said I love you mommy. In that moment, I was flooded with occasions that I will never have with my little girl. All these flashes of non-existing events washed over me and I was drawn down into remembering what it is Fiona could never and will never be able to do. And then, as though all the color was sucked out of my world, I return back to the reality, my reality. Because that is what it is-we have lost our Fiona. The beautiful little girl sleeping in front of me in her wheel chair is really just a shell of who she was, one whose body is failing as GM1 slowly takes her away from me.  I still experience her smell, her feel, her soft heartbeat and shallow breaths, but that is all we get now.  I am thankful to still hold her and cuddle her in my arms and tell her how much I love her. 

We don't even get a glimpse of our Fiona's personality. Nothing. I keep hoping and praying that maybe this time will be a breakthrough, and I will get some kind of reaction....even a little one. But nothing. It is as if we only get to keep her body with us, not her smile or personality. 

Then I feel so incredibly guilty for feeling this way. This is my little girl, this is my baby daughter, my miracle. She is still here with us. But at the same time, she isn't really here anymore. I miss her, and I would do anything for just something- a smile, a giggle, just something to let me know my little girl is still in there. 

I'm going to crawl into bed with Fiona and snuggle with her. Maybe, maybe by some miracle, tonight I will get a glimpse of our little girl. 



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