Wednesday, October 19, 2016


We are all guilty of thinking it.  We are all guilty of feeling it.  When we find out someone's child was diagnosed with cancer, or when someone has a family member who has died, its essence surrounds us.  When we learn a child is diagnosed with an incurable disease, we all immediately think "How horrible", "I can't even imagine", "So awful", the list goes on and on, and so does the overwhelming sense of pity.

Pity: "the feeling of sorrow and compassion caused by the suffering and misfortunes of others"
I have a whole new relationship with these words.  It frustrates me in a way that I have never felt, but I am sure I am not alone.  I feel upset with myself for letting such a small word take me over and make a huge impact.  A negative impact at that. I feel so badly for all of those times I myself gave way to that feeling when I met someone who had a child or family member who was experiencing a less than perfect situation.  Now I am the person and family member on the receiving end.  I hate to impose my emotions on others, but many of us (if not all?) who find ourselves in a position listed above, or any other position that others might feel warrants this not want or need your pity.

I can spot the look from across the room when a persons glance lingers a second longer.  I can feel it in the air when someone walks over to the stroller and attempts to interact with my daughter who does not even acknowledge this persons presence.  I can read it on the faces of the stranger who overhears my conversations with others as the conversation shifts to talks of seizures and development.  It is all around me and it is impossible to escape.

I understand the situation can become uncomfortable fairly quickly when someone realizes that Sonzee has epilepsy, a developmental delay, and is unable to eat by mouth.  Yes, it absolutely sucks that this was all caused by a random de novo, no one person is responsible type of genetic mutation.  I know the typical response is the stoned face expression followed by various questions about whether the seizures can be cured or if she will grow up to have the same cognitive abilities as typical children.  I can handle the conversational dialogue and in fact I encourage questions and love to talk about everything CDKL5.  But please hold the pity.

Awareness.  That is what I hope to impart on others.  I want others to learn that people are different for various reasons, and a good majority of the time it occurs due to random circumstances.  I want others to not feel embarrassed to ask why Sonzee has a sticker holding a tube on her face.  I want someone to question why I am unfolding a stroller from the trunk of my car that is parked in a handicapped parking space.  I want people to ask why I have a light up blinking toy in the water at her swim class.  I want to provide education.  I do not want people to assume anything.

What I really do not ever want is for others to feel sorry for me, for Sonzee, or for our family.  There is no reason to feel this way.  Everyone has challenges and misfortunes in their lives.  No one is exempt from tragedy.  Yes, the circumstances are unfortunate, and I wish my daughter was a typical almost 20 month old toddler capable of doing typical 20 month old toddler activities, but that is not the case.  Please do not ever feel sorry for us.  Please continue to ask questions, tell Sonzee's story, offer support and a shoulder to cry on when the days get overbearing, and do your best to be there to celebrate with us when the days are amazing.

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