Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Missing Our Bond - March 1, 2013




One of my favorite bonding experiences with Fiona was being able to cuddle for hours and just stare at each other.  Paxton would say that Fiona lived on my shoulder all her life.  She loved being held on my left shoulder and I loved having her there.  If she was fussy, crying, or needed me all I had to do was put her up on that left shoulder of mine and that immediately soothed her.  Paxton and I always felt that for a nonverbal child, she is incredibly expressive.  You would always know what she was feeling because of her eye movements and facial expressions.  It is completely unfortunate, but Fiona is no longer able to be expressive; that is completely gone now- all of it.


Fiona’s eyes are now both just staring into heaven. She can still move them to the right or left when we talk to her and up and down; but that’s about all she is capable of doing right now.   I know that she still reacts to light, but I’m mostly concerned about the overall decline and her inability to be expressive entirely.  I’m worried about what it all means in terms of what is really going on? We also wonder if she can still see us. Could she have lost part of her vision or even all of it? We just don’t know with this disease, and to have all these unanswered questions is very difficult and heartbreaking as a parent.   


There were times in the past that I could put my face strategically right in front of hers and we would make eye contact, but that’s no longer the case; it just doesn’t happen anymore, and I deeply miss that interaction between us.  Fiona is presently using her eyes similarly to how a blind person uses theirs, but whether or not that is the actual case, we just don’t know.  There are those rare times, however, where I will lay her on her side and let her watch Sesame Street on her iPad.  It’s only a matter of 1 or 2 minutes before I realize that she just isn’t interested in doing so any more.  I remember when she used to love watching Sesame Street and would react to Elmo, Abby, and Grover.  Her mouth would open wide with excitement and sounds would come out.   It’s been about two months now since she has last made eye contact with either one of us.   Now it is almost as if she looks right through Paxton and me, she is just no longer making that connection with us and I miss it, badly. 


It’s been extremely difficult for me to no longer make that eye contact with Fiona and to be able to engage in that kind of experience.  I feel like my only way of having two-way communication with my baby girl is now gone.  Although Fiona and I never did have a conversation with words or signs, I feel as if we were still able to communicate to each other through our eye contact.   Losing that bond with her now, not being able to have her really see into my eyes, or hold her on my shoulder, or nurse her and tell her how much I love her and how much I hurt for her feels so unfair. This disease is so damn mean and cruel! 




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