Thursday, August 30, 2012

You're not awesome, and you don't suck.

Summer is over, and although I am despondent about the weather change (under 65 degrees? FRIGID!)  I'm happy to return to routine and finally have time during the day to write.  It was impossible to write during the summer while juggling two jobs and full time single parenting - a girl needs a few SILENT hours to write and there certainly was no silence in my house this summer!

Life has continued to be crazy, and busy, and stressful.
As my mother has said before "Kath-a-leen, you never  make things easy on yourself.  You always take the hard way."  And (grudgingly admitting this) she is right.  I tend to explode my life and then am left picking up the shards, as oppose to thoughtfully and 'appropriately' making changes.  Example - the social service agency formally known as my job found out first on THIS BLOG that I was leaving after 13 years employment.  Let's just say my boss, and her boss, were NOT HAPPY.  Oops.  And a duh.  Perhaps I should have had a little chat with them first, that would have made sense.  Sense, what IS that?  Do they sell it at Walgreens? Is there a prescription for it?

Drama.  Insanity.  50 Shades of FX.  Psychotic stalkers.  The summer has been full of weirdness and heartbreak and chaos, and I'm hoping that with fall, streamlining my life, and intensive therapy, there shall be more sense, healthy decisions, and agreements between my heart AND head (those two argue a lot).
I know I'm heading in the right direction, I can feel it.  Plus I REALLY want to paint the dining room purple, and I'm positive that will fix everything.

Our family had no formal vacations this summer, although O and I have had three trips to the MIND Institute in Sacramento ('Where IS the post about that anyway, Kathleen? We are still waiting to hear what the hell you are doing there!'  No blog yet.  Keep waiting people, I'll get to it.)

So I've had three Cali trips and also a quick 3 day visit to Miami for the National Fragile X Foundation's International Conference.

Intercontinental Miami, beautiful hotel host of the NFX Conference
The NFX Conference was fabulous and completely necessary for me.  I LOVE and NEED to spend time with my national FX family.  It's a mutual love and understanding that goes beyond anything I've ever known or experienced.  It's can also be totally overwhelming - the amount of information, hearing stories from more experienced parents, both horror stories and stories of hope - it's a highly emotional experience and there is much information to digest.

By day 3 I shut down and spent part of the morning in Eric and Lola's hotel room solo (I was leaving that day and had already checked out of my room).  I'm not so great at hiding my emotions and didn't want anyone seeing the stunned look on my face - Eric only had to take one look at me and handed me his hotel key (see how awesome these people are?).  I laid in their bed, cried a little, and slept for a few hours.  I left the hotel that afternoon to hop on my plane without a 'goodbye' to anyone  - except Mrs.  Cindi Rogers who kept popping up all week like "Where's Waldo" - she was, and continues to be, a gift that I desperately needed.  I can't thank her enough for the support she gives me.

Myself and FX celebrity Cindi Rogers. 

While at the conference, we watched a phenomenal video called "Fragile X Got Talent," highlighting the talents of kids and adults with FX.  Click HERE to watch it...seriously...PHENOMENAL.

We also watched a sometimes wrenching, sometimes hilarious but ultimately uplifting movie called "Mission to Lars" about two siblings, their brother with FX, and their adventurous attempts to meet Lars Ulrich from Metallica (Do they? Don't they? You'll have to see, you can friend them on Facebook here )

As part of the conference, we also went to a Florida Marlins baseball game (INDOORS! Sacrilege!) that not only promoted FX awareness (Click HERE to watch the Marlins Fragile X PSA!) and paraded our unbelievable LINKS group leaders on the big screen, but the highlight was when the first pitch of the game was thrown by Glenn Sheldon, a 12 year old boy with FX!  We were all as proud as if he was our own - because really, he is.

Glenn and his parents

Deep Thoughts with Ted
During the game, multi- award-winner-and-friend Ted approached me and we had a 'deep conversation'  - yes, during a baseball game!  Who actually watches those things?  Can you see the look of intensity in my face in the photo above?

He had been concerned about my well-being and wanted to know how I was doing (one of the many reasons why he wins the awards! Sweetest and most caring guy evahhhh!).  We discussed the many recent changes in my life, and Ted could see I was clearly struggling - to figure out who I am, where I'm going, and what I want out of life.  We discussed the pedestal that others put parents of special needs kids on -  SO often hearing quotes like "You are so amazing/awesome/strong!"

The problem with being thought of as amazing or awesome or strong is that most of us parents (all of us?) don't FEEL awesome or amazing - we feel flawed and broken, struggling to get through our days,  imperfect people and parents.   We are only trying to do what's best for our kids, and that isn't so unusual!  So when you hear "You're awesome! You're amazing!" -  it doesn't ring true, doesn't FEEL true, and therefore is a lie, a facade that others put upon us.

Our lives are filled with IEPs, OTs, PTs, SLPs, potty training, repetition, frustration, sadness, aggression, grief, guilt, hope, inspiration, laughter, everlasting friendships, dripping sarcasm, love, pissed-offed-ness, when someone says "You are AMAZING! You are AWESOME!" you think "Nope, I. just. suck. You have NO IDEA."

I'm not perfect, and as I've written before, it feels as if imperfect=suckiness.  House, car, kids, body, jobs, decisions, daily mistakes and fuck-ups - if it's not perfect, then what IS it?  It blows!  Or at least that is what it feels like - what I feel like.  I SUCK!  (And I know this doesn't hold true for only parents of kids with special needs, but many of you 'regular people' also.)  

And the best words of wisdom from Ted - that I have held onto ever since - "You aren't awesome, AND you don't suck.  You just have to be good enough."

Good ENOUGH? Good ENOUGH? Really, that's it? Well THAT I can try!
(Although even that can sound formidable - define 'enough.'  Ted would yell at me for saying that though, shhhh.)

Ted said "On your best day people will think you're amazing, and on your worst day people will think you suck.  What you need to remember is you're actually aiming to be in the middle - just being good enough, every day."  

So yeah, I'm not amazing, or even awesome.  But I also don't suck.
Lather, rinse, repeat.


  1. Ok, here I am, all ready for the day (make up included which is NOT normal) and I have to tear up and ball? The fact is that we all know you are awesome's just a matter of YOU figuring it out. Oh, and purple is my favorite color......:)

  2. Very well said - I always feel like crap when people tell me I'm amazing, because you're right, it's a lie - most days I'm just getting by, and success is when everyone survives - nothing amazing is happening.

    1. Yep, just keeping them alive every day is a success, Bonnie!

  3. Wow, I didn't know you were such a good writer AND you remind me of .........ME! I feel writing is one of my strongest skills in this life and what you wrote above seems like you secretly drugged me, I said all of these things about how I feel and then you wrote them down and put them in your blog! WTF???? I am so glad I got to meet you at the Conference. I too, shut down on day 3, maybe 2. I wanted to get the hell out! I didn't enjoy the banquet and dancing even and I was looking so forward to that! I was emotionally spent and physically exhausted. Thank god we went to the Keys for 2 nights before returning to reality. Anyway, my point here is you are funny, like me, great personality, like me, can write, again like me.......and maybe you're a true redhead too?? I sure am......;) I feel so lucky to have met you in Florida. Without FX friends who actually get what you are feeling because they live it too, I'd be broken. My husband just text me and said, "did you read Kathleen's blog on FB? It's good.." and as he sends me that I was typing to you this message......craaaazy. He knows everything you say above hits home from the R word to the awesome crap. We despise being told we are awesome and amazing parents because we feel we don't live up to those words we just do what we can and it's never enough in our minds. So with all that being said........I ......think..... you're.... neat. Do you like that word? What about swell? hahaha anyway, one more thing. We have/had the same line of work too. Social Work......this just is creepy now isn't it lol? Thanks for this and hope to talk to you soon.

    1. Megan, it's totally bizaahhh how much we have in common! Neat? Swell? LOL. SO HAPPY I met you too! It's what this crazy little FX world is all about!!! xoxoxoxo

  4. I often cringe and find no words to say when my friends tell me what an amazing strong mom I am and that I am such a great person for being able to do what I do. I want to look at them and ask if their heads have been checked recently for a screw loose. My house is a wreck, my child is a mad man, I am lucky if I make it out of PJ's on the weekend, and if I get a home cooked in meal in at least 2 times in a week!
    I do not like to be placed on a pedestal it puts undue pressure on me and if I fail then I look like an idiot and no one will be there to pick me up because everyone says I was such an amazing person and apparently amazing people are not suppose to fail in their eyes.
    I felt, reading your blog, that we shared a lot of the same feelings and thoughts. When I first started reading about what FX my heart sank and I felt a sense of anger with it being classified as retardation. My child is not retarded he is the smartest young man. I hate that word I hate hate hate the R word!
    I hope your life is starting to return to normal now that school is back in the swing of things and you can have so much needed "me" time

    1. Thanks so much for your comment Jamie!! And your words are exactly why Ted's meant so much to me - we AREN'T amazing! One of my friend's "ordinary people living under extraordinary circumstances".... and even that felt strange...'extraordinary'? We're all just trying to get through EVERY day...sometimes we barely survive them, sometimes we might..even...have...GASP...FUN?????


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