Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Exhaustion - March 1, 2013




I am physically and emotionally exhausted.  Parenting can be an exhausting responsibility for any parent, but parenting a terminally ill child takes things to another level of fatigue.  Between doctors’ visits, feedings through her feeding tube, administering medicine, and tending to Fiona’s every need and move (not to mention the time it takes to research and understand this disease) there is just no break for me.  Not only am I taking on the responsibility with so little knowledge going into the process as I’m no doctor or pharmacist, but I’m doing my best to act flawlessly as her mother and nurse as any minor mistake or misunderstanding can possibly result in a disastrous situation for Fiona.   I’ve accepted that my life demands such a constant feeling of emotional and physical fatigue.  Hospital and doctors' visits are not just a few times a year; they may be a few times a week. Imagine a list of meds and administration times longer than your grocery list every day. Instead of calling friends, you are mostly calling doctors. Picture frequently handing your child over for tests and surgeries to complete strangers while you sit and watch the clock move at a snail’s pace, not knowing if your child is going to wake up the same person as when they fell asleep.


My days revolve around caring for Fiona all 24 hours, feeding her every 2-1/2 hours, pumping, positioning her to sit a certain way so she's comfortable, advocating for her, and trying to learn everything that I can to ensure Fiona is getting the best help available. And sleep... That is almost non-existent.


I am no different than any other mom. We don't just hate it when our kids are sick- it hurts us. However, any mom called to this journey can and will do it, because there is no choice.  As a parent, you give everything you have to make sure your child is happy and healthy- no matter the cost to you.  You make the adjustments out of love, and you realize that now your life is just different.


There are plenty of days I wish for my little girl to be healed, to not suffer, and to be able to just be a kid. That being said, I wouldn't trade her for anything! She has a perfect soul and is an unbelievable gift granted to her daddy and me.  I love her so much.  She is a warrior and my hero.  I am immensely blessed to be Fiona’s mommy!



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