January 7, 2010 mcfadyena

My hopes and dreams for Trey, now


Sadie & Trey smooching Avery, December 2009.

I wanted to add an addendum to last nights post about my current hopes and dreams. Because, although upon diagnosis my hopes and dreams for Trey were squashed, they’re back. I do believe that Trey can do anything he puts his mind to. What is different about my hopes and dreams for Trey before and after diagnosis are not my actual hopes and dreams, but what it will take to fulfill them. It is very possible and likely that it may take Trey more time (I don’t like using the word work because of it’s negative connotation. Reaching your dreams, although work, yes, is not negative. Just like taking care of Trey, Avery and Sadie. Work, by definition, yes. Definitely. But it’s not really work in the cultural sense because it’s not negative. I love being with my kids). Anyways, back to my point.
Just like it’s taken Trey a bit longer to pick up language because of his hearing loss, it may take more time for Trey to reach his goals. But who cares? As long as the journey is enjoyable, who cares how long it takes to get there? I think cultural stereotypes and biases will also effect Trey. I recall hearing Simon Ibell speak about job interviews. Aside from going into interviews and telling interviewers that he would do a better job than anyone else out there, he had to speak candidly about Hunter Syndrome and what it’s taken him to overcome this difference, because those interviewers had stereotypes running around in their heads. But Simon quashed their stereotypes and got the jobs he wanted. Just like he quashed mine when I met him. Simon is so confident, but yet so humble at the same time, you can’t not believe in him.
Similarly, when Trey was about to start Kindergarten, the principal suggested I get a handicapped placard so I could park our van at the front of the school. What?????????? She had met and played with him before, but she still suggested a handicapped placard. What?????????? As I stood there looking dumfounded and confused (yes he has hearing aids, yes he has Hunter Syndrome, but he can walk and talk and play and listen and and and and… so I’m not sure why in the world you would be suggesting a handcapped placard… oh yeah, because when you look at Trey you see “HANDICAPPED/SPECIAL NEEDS”. You see a handicapped placard), the Kindergarten teacher, who had also met Trey, said maybe it was a good idea just because of the fact I have 3 small children and no one can drive onto school grounds to drop their kids off. It could make life a lot easier. I thought about it for about 1/2 a second before deciding no. What message would I be sending Trey?
I just wanted to add this addition to my blog yesterday because I wanted to make sure you all know that although temporarily destroyed, I was able to find again, my hopes and dreams and wishes for Trey in the rubble that was the aftermath of the diagnosis. Trey’s path may not be as easy as others (although that is always determined by the eye of the beholder… I think Avery thinks he has it far worse off than Trey), but I do believe he will get there, where he wants to go. If I don’t believe in Trey, he won’t, and neither will anyone else. When most people see Trey, especially people we don’t know or don’t see very often, they see Hunter Syndrome. Although I’ll admit how great it is to hear people tell me how awesome he looks, I know they’re looking at Hunter Syndrome. So it’s my job to look at and believe in Trey, who is effected, but not defined, by Hunter Syndrome.


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