Stares and Smiles

It’s not polite to stare.  Didn’t our parents tell us that at least 71 times between the ages of 2 and 10.  One of the things I’ve learned the last 6 years is that a lot of adults seemed to have forgotten that piece of the etiquette puzzle.  Suzie and I have always enjoyed going out to eat at restaurants, shopping, etc and we still do today except now usually we have Kinley with us in her chair.  The stares are the most noticeable to me in restaurants as we pass other tables and booths on the way to our seat.  I’m sure they don’t even realize they are doing it and maybe it’s just a normal reaction to stare when a 65 pound child rolls by in a stroller/wheelchair.  My least favorite stare is almost always accompanied by a sympathetic head tilt and “you poor thing” facial expression.  The best stares are from other children as they are genuinely curious and I think that is sweet.  Sometimes they will ask their parent or even Suzie and I “why is she in a chair”?  Some people though really get it and I admire them.  Hopefully they are passing their manners on to their children, friends, and family.  When we walk by those folks they just smile really big at Kinley and say “hi” or “how are you today”?  Usually cashiers at grocery stores, retail stores, etc are awesome to Kinley and we love that.  So to all the special needs dads out there……..don’t sweat the folks that stare.  Just smile at them, say hello, and maybe next time they will do the same.

Mito what?

Here's the scoop, the lowdown, the 411.  In my 20's when I occasionally thought about my future as a father I never considered the possibility that someday I might be the parent of a special needs child.  The future held many exciting possibilities and trust me none of them involved seizure meds, a wheelchair, or an IEP.  However in the fall of 2002 my 2 year old daughter began to have symptoms that pointed to a neuromuscular disorder.  The formal diagnosis of Mitochondrial Encephalomyopathy didn't come until late 2005 but by then I already knew my life had changed forever.  I was going to be a "special" dad.  It's a challenge that I chose to accept instead of run from and it's also a badge of honor I proudly wear every day.  Life is what you make it.  Hmm.....I think Hannah Montana might have said that.  Now you can understand how in some ways my daughter is a typical pre-teen and in those moments I am a typical dad.


I hope to share some of the joys and challenges of being a "special dad" and probably will sprinkle in some sports, politics, and current events if it relates to that topic.  Also I have the good fortune to be married to a wonderful woman who is a great "special mom" to our daughter.  Love you honey!  Well until next time......  cheers!

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