Battles against terminal illness, anxiety, and life!

Together

Looking around the room today I saw a sea of smiling faces. Children were clapping, laughing, and joining together in song. Parents were beaming with pride, and everything felt as if it were in perfect harmony. There was amazing perfection amongst overwhelming imperfection. We attended a music class at our local United Cerebral Palsy today. It was a place where you felt included and surrounded in acceptance.

I stood elbow to elbow and talked with a mother of a child born at just twenty two weeks. She is a miracle baby! She appeared timid and a bit shy but let out a beaming smile when she thought nobody was looking. Her parents and even grandparents were there to watch her enjoy herself. Her mother’s eyes teared as she rested her hand on her burgeoning belly. We talked quite a bit, and it became abundantly clear that no matter where your child falls outside of the norm there is a certain stigma that comes with it.

We both sited many hurts that happen, but the biggest one was the pity stare. The pity stare occurs when one tilts there head slightly, pulls their eyebrows together, purses their lips, pulls up their shoulders, and then says, “I am sorry.” It’s easy to understand why the pity stare and accompanying apology is delivered. Parenting a child who is different is like fencing without gear. You are often scared, exposed, and one wrong step can lead to serious consequences. Despite that, there really is nothing to be sorry about. Trust me when I say that none of us are sorry to have our children. We may not love our child’s diagnosis or condition, but we love our children too much to be sorry. 

Together today was good for the soul. It was ok to ask about another child’s diagnosis. It was ok to to talk about the giant elephant that is in the room, also known as Ataxia-Telangiectasia. It was ok to laugh and even celebrate our children’s unique gifts. There was no exclusion. There were no children excluding others, no stares or giggles, no reason to feel anything but happy and in the moment without fear of having to explain for the millionth time that my child didn’t mean to bump into yours or explanation that while he is drooling he is actually very intelligent. Nope. All of our children were simply talked to as if they were any other child. That my friends is all a parent of any child, differently abled or not, wants for their child. Acceptance, respect, and friendship are powerful.

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