Tuesday, February 7, 2012

Happiness.

Sobbing hysterically in my therapist's office in September of 2010, I cried "I'm never going to be happy again." It was unfathomable to think I could ever experience joy again.  She looked at me (a little too smugly if you ask) and said "Oh, yes, yes you will."  I thought 'LADY you have no friggin idea - but if so what do you know, and can I get a written guarantee?'  But she did know.  The reason I was sitting in her office in particular was because when she called me back to possibly schedule an appointment, she said "I know what Fragile X is.  My best friend's son has it and she wrote a book about it."  That was all I needed to hear, and it turned out that reading that book was what started to help change and reframe my life.
"Spelling Love with an X: A Mother, a Son, and the Gene That Binds Them, "  Claire Dunsford wrote about her struggles both scientifically and poetically, and I related to her need to express the depth of her grief and curiosity of genes and families. I started my blog soon after, just for me, then I sent the link little by little to a few friends and family.  One year later, it became published publicly.  Am I crazy to disclose my inner suffering pain and shame to the world? Why yes, yes I am. Here's why.

Before, I couldn't understand parents like the Gengel's, who had lost their beautiful daughter in the Haiti earthquake - how could they be so active so soon after her death, helping others and building orphanages?  I would think "I would just lay in bed for years and cry."  How do you survive the loss of a child? 
Now, I get it.  Not completely as to the depth of their grief, I wouldn't compare, but to the similarity to a deep loss for your child and their future.  The part of you that will forever be broken, the part you don't 'get over' but learn to live with.  Everyone says, "As long as my kids are ok...."  and when they're not - well, freedom's just a word for nothing left to lose.  I can't change it, I  have to live with it.  So, life can't wait.  There will be no, "Once the kids are a little older...graduate high school...go to college....get married." I can't wait for my life to begin so I have to live it now - and since Owen's diagnosis, I have been the house of Y.E.S.  Yes, I'll be on the committee, become a member, go to your party.
I notice this with my other FX mom friends - many are busy exploring a diversity of interests and also make time for themselves, nights out and soon, for us local moms, our FXMoms' weekend away (real woot!).  We all make the time NOW - our kids may never sleep through the night, be able to be unsupervised, grow up, out and away - we can't wait.  The time for fun is now.   We easily, no guilt, ditch the kids and leave them at home with our husbands.  I'd like to know how many moms could truly do that.  NO. GUILT.


I have to work this whole 'happiness' thing - can't wait for the damn bluebird, have to hunt the thing down and capture it.  I have to make a conscious effort to make decisions that will make me happy, including all the small yet important daily stuff, minor joys like a new scarf, lattes, sitcoms, library books and dancing with the music up.

I have to say yes, seize opportunities, why the hell not?  SURE I'll open a business, join an advisory board, agree to public trainings? And why not sign us up for 6 monthly cross country trips for research? Start a dining club?  Yes yes yes.  Disclose the most painful part of my life to the entire world for scrutiny? Why not? 

Really, you can't take any more from me then I've already lost.  It's easy to take risks when you've lost big.  All the cliches are true - life is short, life won't wait....life is fragile.  You either let it stop you or push through it and fight, head down and with no fucking idea where you're going but always moving forward.  No guarantees, no idea, but can't wait and today better be good.  Will I ever be happy again? Trying.

I'm heading to Washington in early March for Fragile X Advocacy Day due to 'recruitment' by pushy/fantastic FX friends - and let's face it - how am I supposed to say 'no' to advocating to my son's future? That is the truly meaningful part.  So yep, I'll do it, I'll show up, I'll write, I'll risk it, I'll go.  Jump in, jump in NOW.

28 comments:

  1. This might sound odd, but when I read your blog I picture you as a happy person. And your profile picture - your smile radiates an inner beauty.

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  2. Reading this made my day. So happy that your therapist was right. How can any family function if mom doesn't take care of herself? If I ever sleep again you know I'll be ditching everyone with no guilt for the next dining club!

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    1. Love you Danielle! With baby twins, your fun can wait! LOL!

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  3. Jump on in the water is fine...most of the time. I'm really looking forward to this weekend AND D.C. (I'm just going to assume that I am the "fantastic" friend and Holly is the "pushy" one.)

    This probably isn't time for a great big I TOLD YOU SO either, is it? No...too soon I think but keep me posted ;-)

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    1. Someday you will get your "I told you so," Lola! Not yet!!

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    2. And I'll give you a push whenever you need one. xo

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  4. Wtf! I am *not* pushy!
    Beautifully written, as always. And Claire is a gem!

    And M is the fantastic one <3

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    1. Um can I say 'assertive'? But I also said FANTASTIC! CMON!

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  5. house of YES :-) excellent, as always, and so good for me to read, again, about living NOW... one of my focuses for 2012.

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    1. Thanks Ame - fashion helps the happy :) !

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  6. Beautifully written and good advice for me, someone who likes to hibernate sometimes. My mom always says, "This is not a dress rehearsal. You only get one life, so make it good"

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    1. Thanks Kristie - moms are often right, eh? So annoying!!

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  7. Love your House of Yes idea. That's why I'm taking my drum lessons and having more lunches out with friends and my girls night out here and there! Wish I could go to the Moms Weekend! You ladies have lots and lots of fun!

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    1. Drums!??! That's awesome Rosie! I have a sudden idea - national fx moms' weekend away!! Who's with me? Lola, anonymous non-pushy Holly, get on this!

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  8. National FX Moms' Weekend Away has been considered *but* it always seems to involve therapists and support groupishness rather than lots and lots of alcohol. FYI.

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  9. Loving the attitude; so like mine!

    Yes I can be a school governor, yes I can do a degree and get a really good 2:1, yes i can do a teaching degree and then be a teacher of adults, yes I can have a laugh and not feel bad about it, yes i can buy those killer heels (like today) and have lunch with my daughter and grand daughter, yes I can go out and get pissed at the weekend (hopefully) and Yes i can do this all on my ownsome with 2 very special FX teenage boys!!!

    Yaaaay Don't take life too seriously cos no one gets out alive anyway!!!!

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    1. OMG! I love it! You are awesome!

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    2. You're awesome too Kathleen and I am just lurving your feistiness and fun nature...
      Like the saying goes; "If you've only got lemons, then make lemonade" Or something. Anyway the point is that you can either bemoan your 'bad luck' at whatever shite life throws your way or you can grab the opportunity with both hands and say 'Ok now what we gonna do to make this experience fabulous"

      The first attitude is dull, boring and negative and achieves sod all. It is reflected in your personality and everyone will know your'e a negative person and will feel your negativity reflected back into their lives...
      Now that's not to say we don't all get down days/weeks maybe even months, but if you can take control of your life and your situation then that's the main battle won.

      Oh blimey this is getting like a blog in its own right haha.
      By the way i'm not anonymous, I just didn't know how to put my name but you'll find me on the FX pages on FB (Kerry Page)

      Lets big it up for all us wonderful mums, dads and carers of such fantabulous children- they make us what we are today and for that we should be damned grateful!

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    3. You are. too. funny. I am finding you on fb and friending you, watch out!

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  10. Oh my, you set off my waterworks every time!

    I sometimes wish we could get some of that freedom to enjoy the now but situation dictates otherwise so I'll just sit by the fire and enjoy the fact that you guy are doing it or all us 'special mums' xxxxx

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    1. We're doing it while we can, Dorinda! Nights by the fire don't sound too bad either!

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  11. It may be a club no one wants to join...but will you ever feel uncontitional, non judgemental, and joy for your child???

    Kids with needs are just as wonderful as kids with different abilities.

    Fragile x is only a piece of your child...you determine how much controls you or them.

    Does that make sense?

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  12. Not sure if you are refering to this blog, but i have never read any conditional love, judgment or any other feeling than what we all feel for our kids. Just interwoven with sadness and anxiety. Not grieving who their kids are, but grieving the future they had envisioned for them

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    1. That makes sense. Grieving is very hard and it con.tinues to come up. Maybe thats what gets in my way and guilt.

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  13. Loved your blog post, Kathleen...I appreciate your honesty and as a parent of a twenty-five year old FX'er, a thirty year old carrier daughter, and a thirty-four year old untested son, I experienced a deeper understanding of my personal coping strategy all these years through your words. '...Freedom's just another word for nothing left to lose.' Truer words were never spoken...keep moving forward and keep writing, girl! Debby Simcoe

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    1. Thank you so much Debby! I really appreciate words of encouragement from someone who is traveling the same road but further along her journey. I'll keep writing if you keep reading, and feel free to always pipe in with advice, it's valued!

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