Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Angels Among Us

 

Our small community, consisting of families who have a terminally ill member, have lost four children recently, and these losses hit close to home for me.  Five angels, Kendra, Allie, Brielle, William, and Lexi lost their battle with GM-1 and Tay-Sachs (GM-2).  These children and their families survived surgeries, hospitalizations and the everyday challenges that often come with raising a terminally ill child. These parents were managing their kids’ health; their kids were stable.  Kendra, Allie, Brielle, William and Lexi's parents were seeking refuge in that stability because that meant success - that is, until the day their children were no longer stable.  The children's physical vulnerabilities restricted their ability to continue the fight and just like that, they are gone.

 

I find myself guilty of getting caught up in the day to day motions and frustrations connected to raising a child with an ultra-rare disease.  What I would define as a “normal” day for me is far from normal for many.  Many parents will never in their lifetime watch their child experience one seizure and I may see several a day for consecutive days.  It’s a foreign concept to me to ever want your child to be quiet because they talk all the time and you’re tired of listening.  I would love to listen to Fiona speak and hold conversations with her.  I would love to see her flipping pages in a book or scribbling with crayons and markers on a picture, but that just isn’t how it is for me, and that’s ok.  My experience with parenting is completely different from most, but I attempt to stay focused on positive thoughts that Fiona is doing well, all considering, and we are managing and caring for her the best we can.  

 

It is discouraging and heartbreaking when I hear of yet another child being taken away by GM-1 or Tay Sachs when a cold develops into a lung infection or the child just couldn't fight the disease any more.  Its then that the reality of my family’s situation comes crashing through.  It’s especially at those moments that I must ground myself again to what is really important.

 

I have learned an important lesson through this experience.  It’s something that I think all moms should know or at least just think about sometimes.  Its that all the other stuff-just really doesn’t matter.  Because life can be so fleeting, I am reminded to slow down and take the special and necessary time to look into Fiona’s eyes and linger a little longer as I hug her or snuggle next to her in bed.  Yes, there will always be house chores and life gets messy and busy, but I don’t know how much longer I have with my Fiona.  So I’m soaking all of it in and feeling as joyful and content as I can with what I have been given.

 

 

 

 

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