Friday, June 15, 2012

Semi Charmed Life

Well hello! Good to see you.  It's been a while.  I was really, really REALLY sick of you.  Tired of being enslaved to you, both externally and internally.  Monitoring, checking stats, moderating comments, reading and replying to emails, updating design and photos - but also, and the more relevant reason, being vulnerable.  Writing this blog, about a SMALL part of my life, is both utter self disclosure yet a mask.  Raw and honest, I can't bullshit you - so if I can't be real, I can't write for you.  I show you only what I want you to see, pry up a small corner of the band aid and let you see a tiny tip of the gaping wound.  You might think this blog IS me, however it's about 3-5 percent of me on any given day.  I have a whole real life to live that I don't commit to paper (just facebook).  And sometimes, I have nothing to write 'as the parent of a child with special needs.'  Oh sure, I have a WHOLE bunch of other drama I'm sure you'd LOVE to hear about, as it is the stuff Lifetime movies are made of, but you'll have to wait for the book.  And yes, you WILL be in it.  So be fucking afraid.

I will admit that even though recent problems aren't due to 'Fragile X', they are the reverberations and aftershocks of the diagnosis - not directly related to the explosion, but related to the eventual fallout.  There is no way you can experience that and not be changed and effected, immediately and forever, and the real volcanic eruptions are years after, living with the changes within yourself and trying to figure out how the new you fits into a new future in the same life, and what needs to change for that to happen.  Fix fix, make it fit, be happy again, move on, keep going...
Or you could just wait until you turn 40 and then have a HUGE midlife crisis like me.  Whatevs.

As the days and months have slipped by in the year and a half since I started writing this blog, so has the pain. Like any grief, time does help heal.  Cliches are often true for a reason, people.  Life changing events happen, we adjust, and then we eventually return to baseline.  It's our biology as humans.  Make lunches, go to work, eat meat, wash laundry. Repeat. My life has become less and less about 'the diagnosis' - well,  you don't expect me to sit around and cry about it forever do you? I mean, yes, I will, AT TIMES, but I have big girl undies and I put them on EVERY DAY.  Except for, well, ummmm...never mind. But that's a different topic, this isn't 50 Shades of FX!  However that will be in the book too.

Owen and I will be leaving for the MIND Institute this Sunday, bright and early.  JUST him and I on cross country flights, layovers included, on a 5 day trip to the great state of California - trip number 1 of 6 (yes, my insanity has officially been confirmed NUMEROUS times this year - and this is one of them).  I am a mix of absolutely terrified combined with totalllllllly pumped.  It's pretty much the life of a Fragile X mom - intense polarities - like absolute grief and devastation combined with a love so pure it can bring you to your knees, everyday, at a moment's notice. I see what he brings out in people - I just sit back and watch him, really.  That's all you can do is but to live in HIS world.  His neurological system, different than ours, prevents him from living in ours, and I don't expect him to.  I go to where HE is at.  And he loves this world.  When he feels an emotion, it is experienced in every fiber of his being. Joy, fear, excitement - they pulse through him and come flapping out his fingertips.  He throws his arms around our yellow lab Daisy, and she leans into him.  The elderly bus driver who never cracks a smile yet has taken to beeping the horn AND waving to Owen every morning, which thrills him.   He insists in driving with his window down, adores huge trucks and motorcycles, and gets pissed if you drive PAST the highway but don't get on it.  He charms a neighborhood parent, who always makes an effort to say hi and engage Owen every morning, complimenting his smile and charm, who said to me this very morning "If Owen can't make you smile, nothing can."

The world is full of terrors, but Owen shows me the true kindness in people.  He is charmed by the world, and in return, it is charmed by him.
B and O at FX Mother's Day brunch, 2012

And as if to reinforce my point, an hour after publishing this post Owen came home with this gift bag from his two primary aides at school.


  1. I laughed, I cried, you speak the truth, I love ya.

  2. "this isn't 50 Shades of FX!" I fucking LOVE you


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