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Mary Cate story hits home

  • Written by Claudia Parker

 

Claudia Mug Shot-Color

Taekwondo is starting in ten minutes. We've got to leave right now!”

That was the scene in my house a few years ago and I was doing some of the commanding.

I was watching my then-preschooler struggle to get into her uniform. I wanted desperately to intervene, so I could hurry things along. However, she jerked away each time I reached for her saying, "Mommy...I can do it!"

            In her final attempt to pull her elbow through the sleeve, the fingernail on her thumb acted as a razor, slicing into her eye. She let out a whistling howl, sealed her eyes closed and hopped. Once subdued by my petition to help, she opened her eyes and I flinched. She had busted a blood vessel.

            "What!?" she said, looking back at me.

My grim expression was telling.

            I played it down. "Ugh, well, your eye looks a little red.” I said. That was an understatement. Try bloody Mary red!

“Does it hurt?" I asked.

            She said no and told me she was fine. Regrettably, when we arrived at Taekwondo, people weren’t exactly discrete about letting her know they noticed.

            "WHOA! What happened to your eye?" one kid said.

            Her eye may not have hurt but, her countenance showed her feelings were. She said everyone that pointed out her injury made her feel bad. Fortunately for her, the flaw was temporary and healed within a week.

If only things were that easy for my youngest daughter with special needs. She looks like a typical developing child but, she has an intellectual disability due to a FOXP1 gene mutation. It can be awfully uncomfortable observing her in social settings with those unfamiliar with her tendencies. Their squeamish body language and looks of confusion speak volumes. It’s as if they’re saying, “Hey kid? What’s wrong with you?” 

            I must admit, my infomercial explanation of her diagnosis is becoming more concise. Depending on the setting and applicable circumstances, it sounds like this…

            “Rhonda-Rene communicates using sign language, pictures, and gestures. Did I forget the frequent, excitably outbursts? Due to a speech impairment called Apraxia she can only verbalize a few words. Her lack of language doesn’t hinder her desire to engage people. She can be forward, unknowingly invading personal space. Being able to move is a necessity for her, it regulates a sensory disorder that requires she seek vestibular input through swinging, spinning, climbing, pushing etc. Because her developmental age is much younger than her chronological age, which is, it’s challenging for her to participate in certain social and academic activities without assistance. While she’s extremely affectionate, unless she initiates the contact, she may become tactile defensive.”

            I’ve made a vow that even if it’s done singularly, I’m determined to inform people of her condition so she’ll have a chance to be understood. Are we not all unique, fantastically flawed and desiring acceptance?

            I hope you’ve taken the opportunity to read the front page story I wrote about Kerry Ryan Lynch and her daughter Mary Cate, who has Apert Syndrome. If so, you might agree that their bulk-sized school assemblies are probably more efficient than my one-on-one’s in the park. They headline school events like rock stars, playing a ‘kindness’ message that’s applicable to everyone!

             Kerry and Mary Cate are blessed with an enormous responsibility. They’re on the ground, fighting a war against ignorance with the weapon of education. There are people who spend their entire lives searching for purpose. The Lynch family members not only know their purpose, they’re creating a map for people like me.

            It is my honor to identify with their journey. I’m grateful for having a platform that'll bring awareness to their story. I leave you with what I feel is the most powerful statement in Kerry’s Choose Kind presentation, “Everyone you know is facing a battle you know nothing about -- so be kind!”