Mitochondrial Disease Awareness Week is Over, and What Our Future Holds..
A Personal Confession: Taking Care of You, Getting Fit.. and Taking Care of Family.

What Frustrates You Most About Your Special Needs Child?

 Well, technically the question in the packet of papers read “ What frustrates you most about your child?” The questions were typically brief and non-descript and this was the only question that made me pause, put down my pen and sigh. There was less than one line to complete my answer, not anywhere near enough enough space to tell my daughter’s story. 

  It was laughable really, that someone would ask such an open ended question that sounded so insensitive, at least to a Mom like me. The packet was specifically written for parents of kids with special needs, the question and answer process designed to know my child better.. but frustrates? Typically, when my kid misbehaves there is a  “wiring” issue involved in the behavior.. processing, impulsivity, fatigue etc. There is nothing about my daughter Zoe that “ frustrates”  me, as  in.. “ gets on my nerves, drives me crazy, or really *#**#$* with my day.,..yet really... now that you ask.. almost EVERYTHING about Zoe FRUSTRATES me.


 What FRUSTRATES me is that Zoe’s zest for life and fun spirit can be missed with just a half hearted glance from a kid who thinks that, because she sits in a power wheelchair,  she doesn’t play a crazy good game of wii tennis or get on the floor and play Barbies with her sister or, has been know to steal her Dad’s wallet and hide it in her bedroom, just because it was full of money and her Dad left it laying around!

 It frustrates me that some professionals will underestimate Zoe’s intelligence and overachieving nature, because they see first her diagnostic list of multiple disabilities, and they have just never met a kid like Zoe. 

 It frustrates me that most people don’t appreciate her unique sense of humor and authentic ability to just make you laugh, because of the time and patience it takes decipher her drawn out, sometimes slurred or clipped speech. 

 It frustrates me that everything she does, from brushing her teeth, writing her name or playing a game - is so much harder for her to do, yet she rarely complains and smiles her way through most tasks. 

 It frustrates me that she loves to sing and dance, yet she knows how different she looks doing it- so she won’t do it for an audience. Hearing her sing Taylor Swift in the back seat of my car is the best way to start my day, and  I know if others heard it , it would fill them with joy too.. 

 It frustrates me that her spirit, her soul and her being, are brighter and stronger than the broken body that she was given. 

 But most frustrating of all is that at first glance you could never try to guess her story, and you can't tell it in less than one line either. And that by asking such a question, it is obvious that “ they” will never know it, or even understand the heartbreaking answer of what it’s really like being Zoe’s Mom.