*Is the name of my blog offensive to you? I hope so, because it sure as hell offends me. And it's what I would like to scream in the face of the many clueless people who casually use 'the r-word' when talking to me - it's become such a part of the American lexicon I hear it on a daily basis. Do you GET that it is my son you are talking about? My BABY? STOP IT! Spread the word to end the word...
Tuesday, December 6, 2011
I want to thank you falettin' me be myself...again...
I must say November was an overwhelming month. I have said MANY times "I don't want Fragile X to run our lives" - except it appears to have taken over. Especially this past month with that 'little' cover photo and article and alllllllllllll that came with it. Emotional roller coasters of phone calls that had me shaking and in tears "Hi, Kathy? We want to publish your blog - and put Owen on the cover!" Huh, what?? Then I kept waiting for something to GO WRONG. Something GOOD really can't happen, can it? Shawna Shenette's first two times meeting me were at photo shoots and I'm sure she thought I was a neurotic anxious insane lady. I kept waiting to wake up. Then the issue was ACTUALLY published and we were, of course, the featured stars! HOLY CRAP! The emails of support from old friends, new friends, strangers. The complaints! It was- is - surreal and awesomely overwhelming. Crazy. You know, because I don't have enough crazy.
When you have kids, you want others to appreciate them and how 'well' you've done raising them. With a kid with special needs, you want the same exact thing, but the fear of judgement and treatment from 'the outside world' is one of the greatest fears. Greatest. Fears. When strangers smile at or compliment Owen, they have no idea how much their simple comment helps me - it's a contribution of food to my soul - it's such a fleeting throw-away moment in their life, and yet so meaningful in mine. Never discount the importance of an acknowledgement or supportive word. So for us to have Owen ON THE COVER OF A MAGAZINE, for him to be 'chosen' - for others to see his beauty and how much we love and adore him, that, to me, is most important. I'd say his debutante ball went well.
Thank you outside world, thank you Bay State Parent, thank you awesome editor Carrie Wattu, thanks to all of my blog readers, for seeing Owen how we see him, as our sweet blonde little boy. Thank you for believing in me, taking a risk, and letting my voice be heard. It was both a huge relief and incredibly empowering.
How thankful and appreciative I am that our daughter was able to experience Fragile X 'positively' - she was so proud and excited of herself, her brother and her family. After she showed the magazine to her class at school she said "Everyone crowded around saying 'I want to see Bridget! I want to see Bridget's picture!'" (She's still WAY too young to read the article though - maybe when she is around 47.) I hope someday she'll look back someday and view me as a role model- and I hope I can someday live up to that. I pray she always finds and values her own voice in this world.
So seriously - thank you outside world. Thanks for being delicate with us, we're a little Fragile.
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