Wednesday, January 18, 2012

I don't wanna

I don't wanna I don't wanna I. don't. wanna.  I don't wanna talk about it, think about it or deal with it.  I don't wanna open myself up to public scrutiny because I feel weak and sensitive and damaged. It's usually freeing to reveal inner thoughts, as if to a diary, then walk away with relief and into the bubble of distraction of real life, busy life.  I didn't realize the ripples this would cause. Or maybe I 'knew' but knowing and experiencing, two completely different things.  To publicly open myself up appears to create an equal measure of of judgement and criticism, which is both intellectually interesting and yet emotionally wounding.  I realize that not everyone will 'get' me, and I'm OK with that, but most upsetting is when other moms of kids with special needs take offense, who are the last people I want to offend.  I know, you can't please 'em all, and what the hell do you expect with such provocative stuff?   'Us moms' are no different than the general public, which means we come in all shapes, sizes, opinions, religions, and beliefs.  I'm beyond lucky to have found local like-minded FX mamas who are around the same age, with same age kids, and the same black comedic approach to life, at least internally (all names are changed to protect the guilty).  What makes us the same, other than the obvious? Other than genes, grief, treatments, being Massholes, behaviors, IEPs, medications, fondness of the 'f word,' places, people, worlds, humor, hope?  A life of extremes...
FX carriers also have the potential to have lots of other health problems in life.  It's devastating to watch Fragile X slowly take your life from you - children, health, body.  I wonder when it will stop taking from me and it seems it won't.  January, waves of past grief and fear of tsunamis to come.
Ties that bind, frailties that bind, bad-x-chromosomes-that-fucked-up-our-kids that bind.  Don't get it? Don't want you - I wouldn't wish it upon any person or child. 

(thanks Wendy. xoxo)


  1. I wish I could protect you from all this. It's bad enough that you're going through it - but to read judgement or critical words, makes me want to stand in front of you with my fists up and protect you from any further hurt. Are you sure you want to do this blog? Your entire life is working with sadness - sad kids, sad families, sadness in your OWN life dealing with this, and then opening up yourself to judgement and hurt from people that don't know you. You don't have to save the world, Kathleen. You save people all the time... who saves you?

  2. Everyone expesses themselves in a way that is comfortable.
    And everyone can learn from what is being said by others.

  3. Aw, thank you. The negative comments do stick in my craw, sometimes briefly and sometimes for a little more. Comments from my protectors I wrap around me like a cozy soft layer of armor.
    I HAVE thought about stopping, and you're right, why continue to open myself up to injury? But I can't. Not only have I made a commitment to myself and whoever actually reads this, but I won't bow down to criticism, and I won't let opinions stop me from being who I am and saying MY truths. I'm not a hypocrite and I do practice what I preach - some of which are 'take risks in life, take a chance, be honest, don't judge your emotions but accept them. Don't let negative self defeating doubts hold you back.'

    I also say "You have to say 'fuck you' to the bitches - high school may end but there are always people who will try to stop you from being you. That just means you are doing something right."

  4. Interesting ending..last paragragh makes you think.

  5. I am glad you are continuing, because i read the commonts from the moms that relate to you so much. And as time goes on, more and more people will read it, and you will help more and more people. My hope is just that you are the support for so many, that YOU also have support. I am sure you do. So many of us are standing in the wings ready to defend you. You are the support to so many people. Always speak your truth


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