Monday, December 20, 2010

Wow, thanks, and why.

I'm been getting some unbelievably positive reactions to my blog.  Course, you people may be biased because I invited to view it because y'all my family and friends, both old and new.  Crazy positive make me cry responses.  And I must say I am both thrilled and embarrassed.  I so appreciate you reading, you trying to understand, you participating in this journey.   We need your support.  I need your support, your awareness, your love and patience. 
I wondered why I am did this.  It's pretty crazy to put your broken heart on a platter and show it to everyone.  The last blog was particularly difficult to write, and rewrite, and rewrite again....The outpouring of support after posting was beyond words.  Believe me, I couldn't have written if I wasn't feeling better.  The fact that I can write about it is a good thing, and writing about it has definitely helped.  It's been a release, and also it is a relief because it has felt like I'm 'keeping a secret' from the world.  It's not something you just go 'announce' to people, but at the same time you want people to be aware.
It's weird how after the diagnosis, our life changed completely but our daily life changed hardly at all.  Nothing was different except for our awareness of the diagnosis. It was like carrying a bomb, a big secret, like a giant ball of lead in my heart, my chest, my gut.  I could imagine the whispers "Did you hear about Quinn's kid?"  How would they happen? When would people know - when would people be able to 'tell' something's different?   I can't live with 'secrets', me, honesty is a release (guess that is why I'm a therapist).  I believe in being who you are, unashamed, and telling the truth.  Telling the truth about who you are, where you came from, what you've done.  So for me to tell this story, tell MY truth, has given me some sense of control over this, it's been a way to help my friends and family understand without actually repeating the story over and over, it gives me hope that people want to understand, learn, and be aware.

I love to read, always have.  I recently have read several edited books written by parents of special needs kids.  They say the most difficult things are dealing with the diagnosis, something else, and dealing with people's REACTIONS to your child.  There were stories of mom's of kid's with Down syndrome getting 'dirty looks' from people, or a woman running up to a mom and saying "Oh my god, your daughter has Downs!"  I'm like - really- seriously?? People are going to feel free to say shit to me about my kid??? I must tell you, that really pisses me off pre-emptively.  I wasn't even the kind of pregnant lady who had her belly rubbed by acquaintances - I can send off a 'stay away' vibe.  But now I need to prepare myself for comments from strangers?  That worries me.  Sure, if I'm alone I can tell people off or punch them in the nose.  But in front of my daughter I will have to 'role model' how to handle it! So, stick with punch in face?  Right now the comment that come my way are "He is such a happy boy! What a great smile!" Today at the mall someone walked by us, smiled at him, and said to her friend "He's so cute!"  Are these comments going to someday change from positive to negative? It scares me - a lot.

You want to help me? Teach your kids about diversity.  Point out how people come in all shapes, sizes and colors.  Teach them how families can be different - single moms, or two dads, or kids living with grandparents.  Teach them about people with disabilities - people in wheelchairs, people who are blind or kids like Owen, who have fragile X.  Teach them that ALL people have value and deserve to be treated as such.

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