Friday, June 1, 2012


A year ago today was Matthew's last surgery.  Wow!  

In the time that Matthew was having surgeries every 2 months, I dreaded meeting new people.  I didn't have what I would consider a good 'elevator answer' to the question "what do you do?".  "I used to have a pretty good job, but I quit because my youngest son was born with health issues and we spend a good amount of time at doctors' offices and nights in the hospital."  I'm pretty sure that would have been a conversation killer.  There is no benign elevator answer to what life was like during that time.

Today, I don't have that dread, but I realize that people that are seeing Matthew for the first time probably see him much differently than I do, than our friends and family do, than do all that know his story.  These new people see Matthew and may notice that he is different.  In addition to his bright blue eyes, his joyful smile, and his sweet personality, they may notice the braces on his feet, or him drooling a bit more than a 2 year old should, or his asymmetric ears, or the unusual way he holds his right hand, or that he signs instead of speaks, or his 4 fingered hands.  They may wonder what is wrong with him. They may think he is 'unique' or maybe 'special needs' or maybe even 'retarded'.  They won't be awed by his walking, or that he's communicating, or that he's playing like a typical kid.  They won't know that he's had 6 surgeries, that he just learned to walk 2 months ago, that he's 1 of 2 in the world with his diagnosis, that he's cheated death multiple times, and that he's blazing his own trail.  They don't know that he is a miracle.

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