We all have them, whether we like it or not. And how we are labeled depends upon who is doing the labeling.She's precocious. He's artsy. They're athletic.
I’ve found out over the years, through many heartbreaking experiences, that my son is destined to go through life with dozens of “labels” that describe him as a series of conditions, not for the beautiful human being he is. This fact revealed itself to me the day I took my beautiful, injured son to the emergency room for a broken arm. Based upon the reaction of the doctors, the arm was the least condition of interest. His grocery list of medical issues seemed to be more appealing than the mangled arm resting on his lap.
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| Alex and his sister in 2007 |
Today I watched my son as he drove his wheelchair through Barnes and Noble. Watched the people stare at him. Watched him struggle to navigate the narrow aisles of books that the staff had shoved together without regard to access by those who cannot walk on their own two feet. I watched him look around the store for books he wanted, seemingly oblivious to the children gawking at him. I fought back the tears and helped him find some books.
I wish I knew how to change the world in this regard. It is unfair. It is criminal.
**sigh**
This is my son “on paper”:
Ataxia
Auditory Neuropathy
Deafness
Large Fiber Sensory Neuropathy
Optic Nerve Atrophy
Nystagmus
Areflexia
Scoliosis
Legally blind
Hypotonic
Retinal Sheathing
Muscle wasting
Language delay
Neurological disease
Finger contractions
If only people who first meet him could see him as he really is:
Kind
Joyous
Loving
Above average intelligence
Gifted artist
Incredibly handsome (some tell me a young Tom Cruise)
Best big brother ever
Outdoorsman
Courageous
Persistent
Curious
Great sense of humor
Astounding memory
Story teller
Master of puzzles
Math whiz
Spelling whiz
But most of all: regular 10-year old boy trapped in a body that doesn’t work the way it should.
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| Alex and me Thanksgiving 2007 |
