Friday, July 6, 2012

Freedom's just another word for nothing left to lose...

One of the best lines from one of the best songs evahhhhhh - and it's totally true - the more you lose, the more freedom you have, whether that's for good or bad.  To live without your family, or money, or to have no ties and not give a fuck - you are free.  Free of responsibility, or material obsessions, or free from caring what other people think.  Nothing left to lose.
Most people are waiting for a blog about our trip to the MIND institute.  This is not it.  I'll say our trip was  AWESOME and Owen did unbelievably well on the flights, in the hotel, and enjoyed his favorite stool at the hotel bistro where he could flirt with all the girls.  More on that later.

What has happened is that Owen's diagnosis - the emotional fallout, and then the publication of this blog - has totally changed my life, for good AND for bad.  Publishing this blog was an enormous stressor and at the same time it was a relief, to have it 'out there.'  It has also been difficult living with the repercussions of many acquaintances and strangers (O's medical staff, school staff, local parents) knowing such an intense and vulnerable part of me.
Almost two years since starting this blog, I wonder - is it still who I am? Does it still represent me and how I feel?  Maybe not.  (But yet here I am again, baring all on this fucking blog.)  Can I live for the rest of my life with this blog title attached to my name? I don't know - because REGARDLESS of what it says under the blog title, people still continue to misconstrue it, misunderstand it, and even  look at me like I'm a monster when they hear the title.
I was recently accused of being a hypocrite when I took offense to someone who regularly uses the words "gay, fag, queer" - but it was OK because he used them "in context" and "has gay friends"!  He said "Look at your blog, it's all in the CONTEXT!"  What, huh?  So this blog negates me being able to be offended by racial or homophobic slurs?  Again, am I somehow misrepresenting myself and what I stand for?  Or was he just a huge douche bag? (The latter is a definite).
When I was in DC and met FX Dad and now friend Shannon, it took him some time to put 'me' together with 'my blog' - and when he finally did, he said "You are much nicer than I expected you would be!"  Am I being represented here?  But sure, ok, I'm not THAT nice.

I have spent the past year saying "Yes" to everything, only to become overwhelmed for taking on too much.  I took a risk and allowed this blog to be published for all to see.  It's always fun to admit to suicidal ideation in public.

I pushed myself to do more, be happier, not WAIT...and the fall-out from that has been both good and bad.  Through it all I realized I WAS NOT HAPPY and not 'because of Fragile X' but because of a soft but powerful voice in my head, telling me, reminding me, "You aren't happy, you can't wait, not happy, don't wait...." over and over.  I didn't know what to do or where to go about the nagging voice, so I just said "Yes" to everything I was asked to do, showed up, and tried to ignore the fucking thing as much as possible.

I started connecting with more people - FX friends - and expanding my circle of local friends, some old and some new.  Through talking and BEING with other people, my unhappiness became clearer to me - I would hear how others talked about their lives and their marriages, with faith and hope and love, and I just felt a sense of hopelessness and negativity.  I had lost my faith in a happier tomorrow.  Through doing 'everything' I was just combating what I was trying to avoid - that my life wasn't working.  I realized one huge part was my marriage.  It has been one of the worst times of my life -  worse in ways that are different from the FX diagnosis, which was pure grief - it's been a a complicated tangle of marital problems and separation that made me physically sick - I have lost almost 40 pounds since January and have had handfuls of hair falling out.

I would think repeatedly, over and over "This isn't what I wanted. This isn't what I wanted. This ISN'T WHAT I WANTED."  40 years old, two kids, one with special needs, and now to get divorced? I am quite the package!!! But I couldn't ignore the whisper in my head any longer, so we are now separated.  The kids have done amazingly well with it, we are both very active co-parents, and we work hard to continue to provide a parental 'united front' against the monsters that are our children. I'm proud of their Dad, who has also been finally battling his own FX grief and demons and kicking ass at it.  I can only hope that regardless of what happens to my family that we will always remain a 'family'- in whatever form we take.

Private practice, my non profit job, marital separation, our cat Mojo went missing, summer, full time single parenting, cobbled together child care, California trips - let's just say I've been "a little overwhelmed" lately.  I'm feeling like I'm doing so much that I'm not doing anything well (sound familiar MOMS??).  I need to streamline - keep streamlining and de-stressing my life - what can go? What can't?
So I've decided to leave my non profit job and focus on expanding my private practice.  I have worked for 13 years there, and it will kill me to leave  - coworkers who have become family, who have seen me and supported me through the worst years of my life, and some of my clients I've known as long as I've been there and watched grow up - frankly I can barely get through writing that part without tears.  You can't do my job (well) and not care - and those kids that you feel like you've known forever, they have a part of  your heart, leaving them, losing them, I'm not prepared for that. At. All.

But...SOMETHING HAS GOT TO GIVE and seeing as the whole Fragile X thang isn't cured YET, I have to go with process of elimination.  What can go?  

Jump. Jump. Jump - Jump out of marriage, out of a job, jumping into the future and the unknown is absolutely fucking terrifying.  I haven't really been looking where I am jumping, I've just been throwing myself off the cliff and hoping I don't smash my head (heart) on the way down...But you know what? It's kind of easy, too.  Because there is a freedom with all this loss, and grief, and acceptance.  When we sit in a restaurant, and O screeches and flaps and people look, I DON'T CARE -  I don't.  I only see him for his adorableness and smiles and being MY BABY.  My blonde little baby boy.  I enjoy him, so look at us, look how much I love him, look all you want because I don't give a shit.

Free - freedom from caring about other peoples' judgements, free to choose my own future,  free to become whatever I want when I grow up.  There is a freedom to being vulnerable and honest on this blog.  Here's my truth, do with it what you will. 

So I'll jump- again - keep your fingers crossed, let's hope I land on my feet...


  1. Life begins at 50. Well that was the timing for me. You have just written my story, almost word for word, so I won't bother to say any more about that period in my life.

    I would never have even dared to hope that life could be as good as it is now, especially after it all fell apart 10 years ago.

    Nietzsche may be right in saying "what does not kill us makes us stronger" but I think it was someone else who said "the cure can be worse than the disease". (It was Francis Bacon - I just had to look it up).

    My new life slowly took shape. My reaction was anxiety and depression as well as loss of weight. This forced me to do some work on myself. I now look on life in a different way, do not allow it to be affected by guilt. I recognize my limitations and accept them so I can now say no. I do not take on more than I can handle.

    I have a loving partner who is a great step father to my children including my 22yr old who has Fragile X. Life is good.

  2. I loved this KQ! Can't wait to see you!

  3. Totally off the subject, but I love the pic at the park and I love your hair color! Okay back to post. Having 3 with FX I have struggled the last 7 years since first diagnosis about not being able to, or having the strength to, participate as fully in ANYTHING as I would have liked to. I am just now this year feeling like I am somewhat in the right frame of mind and situation to give back to all those represented in being such a support to us. It still doesn't always seem like much but we do what we can. So I guess I was more the opposite of what you went through. I was saying no to everything. And in it, was feeling like a loser because I felt like I couldn't handle anything. It's funny how many of us have this fragile x thing in common, yet our lives experience it (life) differently.


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