Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Increased Seizure Activity


Most days, we get along just fine living our life as normally as we can.  I would define our “normal life” to mean daily caring for and tending to every one of Fiona’s recurring and new needs.  My definition of “normal” is ever-changing as it means doing whatever I need to do to provide comfort to Fiona, so as Fiona’s conditions, symptoms and needs alter so does our normalcy.
T oday, however, was really much harder than most other days.  Fiona had nine seizures and by the 5thseizure, I fell apart.  Fiona’s seizure activity up until this point has been pretty minimal with 2 seizures being the most she would have a day. Some days she would have none.  Today, more than any other day, I really really hate  GM-1.  I hate when I let it get me down.  We have come so far, yet sometimes I feel like we are still in square one with this disease.  Today is one of those (what Oprah would call) ugly cry days.  I still find myself asking "why us?" at times.  I really try to avoid feeling and thinking that way, knowing nothing good comes from it, but it’s hard sometimes to look into the eyes and face of my beautiful little girl and not think why? Why her? Why my baby girl?  There are also many moments when Paxton and I are thankful for the life God planned for her and for the amazing gift He gave to US when He chose to place her in our care.  
It’s a very defeated feeling to experience as a parent that you are unable to provide your child comfort or relief at a moment when they need it most.  Paxton has tried to comfort me through these rough times of her increased seizure activity, but nothing could possibly help me feel better.  From a mother’s perspective, nothing is more agonizing than watching your child suffer....When Fiona cries my natural instinct is to get to her immediately and soothe her but during her seizures, I prove to be ineffective with my motherly duty...... some days my love is just not enough to bring the comfort to Fiona that she needs; and that is the worst feeling to experience as her mother.

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