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|
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 http://www.facebook.com/MissionToLars. )
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|
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, judgement......so 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.