Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Our Love

 

 

Last night Paxton and I wanted to see what Fiona would look like if she could stand up.  I held her up and had her feet on the floor.  Paxton held her hands while we both told her how much we love her.  We pictured her running around the house, playing with her toys, and standing right under us asking for cookies.  She brings more joy to my heart than it could hold, yet at the same time I also feel more heartache and pain than it can hold too.  I know Paxton feels the same. I could see the deepened expression settling in his face and hear the pain in his softening voice.  I can read the words lodged in his heart, the ones he doesn't let go.  I know what he wants, what he wishes for and how much he loves.  I think about what this journey has brought into our lives and what it ultimately will take away.


These are all things we never in our wildest dreams thought we would have to deal with, but in our reality it has become what we have had to learn.  You do that for your kids.  We have settled into our not so normal life, which for us has now become normal: various therapy routines,  doctors’ appointments, sleepless nights.  We spend more time with doctors, therapists, and nurses than we do a lot of our friends.  Being a parent of a child with a rare disease has a tendency to take over your social life and what results is a “not so normal to most people but very normal to you” type of schedule and routine full of health-related activities that are necessary for the continued survival of your child.  There are many things that most parents couldn’t imagine having to deal with that Paxton and I couldn’t imagine living without.  Feeding tubes, oximeters, nebulizers, suction machines, oxygen distillation machines,  doctor’s appointment after doctor’s appointment, time-consuming research and reading-it’s a lot, but it’s our life, it’s what we must do.  Not many parents have to worry about limited time with their child, but we have to accept that GM-1 will take our Fiona away from us. It’s an unbearable pain for a parent to have to live with such a prediction for their child; it’s a pain in which our hearts are broken by love, by wishes, by hope for a different outcome.

 

 

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