Tuesday, October 23, 2012

Tomorrow will be alright.

It's an FX takeover week! This past weekend I spent in lovely Connecticut, watching the fabulous Dr. Marcia Braden speak at the Fragile X Society of Connecticut annual conference.  Tomorrow, I am departing for our 5th and final trip to California at the MIND Institute of UC Davis to complete our 'Parent Mediated Language Study' - where they will be assessing and measuring us to see how well their pilot study 'worked.'  While there, we will be meeting with the world famous Dr. Randi Hagerman   for a little 'extra extra' evaluation (per this mom's request).  I won't even mention how next month I have another article in BayState Parent Magazine about - of all issues - marriage and raising kids with special needs! My editor is HILARIOUS, isn't she!  Including a tidbit of 'my own personal story' - along with interviews, research and resources, and including more picture of families - including one of my own by my own 'personal' photographer Shawna Shenette (See our new family photo on my blog? Yep, Shawna. She is unbelievable.  Call her.).  So yeah - it has become a Fragile X takeover-my-life-week.  I'm exhausted and I haven't even hit the airport yet.
I realized today that we will have traveled to Cali a total of 5 times - two planes per day - which equalsa total of 20 planes we will have traveled on by Friday!  WHEW!  The flights are already starting to merge together in my brain - tomorrow is American Airlines - is that the one that has a movie? I can't remember.  Two flights ago we almost missed our flight - literally boarded at 8:28am for an 8:30 departure - we've faced extended layovers, delays, broken planes, frost on wings, little creatures climbing on wings - I can barely remember one from the other at this point.
So yes, Fragile X has taken over my life this week.  I usually DO NOT like that.  It's fine if it's PART of my life, but I'm not a huge fan of it BECOMING my life.  Yes, I'm involved.  I do advocacy and conferences and FXMoms' Nights Out.  Oh and this blog.  So YES, a big part, but not ALL.
I text some of my FX moms daily, others message on Facebook daily, and still others post in our super uber private magnificent Facebook room daily.  Take-over? No.  A huge part? Yes.  But I still have work, writing for BSP, my friends from high school, college, work friends, my dining club, the local restaurant near where I work - when I enter they yell "NORM!!!"  I like to surround myself with all kinds of peeps.  I like to have a big support system (it takes a village to raise a me.).  I like to do all sorts of other 'stuff.'  I like to not dwell on past issues (I know, maybe you wouldn't know it from this blog) but I want to live in TODAY and prepare for TOMORROW, not wallow in yesterday and what couldawouldashoulda.  Focus on the positive.  Yep, that's what I prefer to do.
But this week? We have had the takeover.  Conference, last Cali trip, even my article coming out next week - a little tiiiiiiny bit of the FX life takeover.  It can annoy me, frustrate me - maybe because it makes me sad.  Sad to go to a conference and hear about the struggles, watch videos of 'worst case' kids, fear 'will that be me?'  Sad to watch the videos and how much the kids struggle to do things that 'typical' kids do so easily - like walk over thresholds, get off the bus, interact with other kids.  Sad that I have to 'go' to California at all - that my son's speech - his development- is so delayed that I would - that I HAVE to - do ANYTHING to help.  And sad that I wrote an article where I'm not the 'success story' but rather the 80-90 percent that 'failed' at marriage.  And I also had his monthly school clinic this week.  He's fully potty trained THERE, but they are concerned because 'it takes him so long to adapt to transitions (learned about that at the FX Conn conference) that he isn't getting much 'schoolwork' done - and very little pre-math skills.  Sigh.
Sad that it is a week of reminders of what we are up against.  I don't like to dwell on the negative, or the past, but sometimes...sometimes when it's late at night, and I'm procrastinating packing, and I have to be up at 4:30am to leave on a 7:30 flight, to meet with a bunch of experts and be research guinea pigs, and then to fly home 36 hours later - I'm just drained.  I'm already tired.  I want to get back to my regular life, my regular schedule, and just be normal.  I mean, I'm not normal (insert bad joke here funny friends!) and that's OK, but I want my abnormally normal life back.  Arriving Friday night at 93pm into Logan, I will have it.  But damn if tonight I'm not a little sad, and tired, and grumpy.
So I'll drink a Blue Moon, eat a PopTart, and complain to you peeps.  And next week I'll be back with my big girl panties on, and I'll tell you how pheeeeeeenomenal our visit was, and how they helped, and how I'll miss them.  I'm also hooking up with the awesome Kay sistahhh Michelle - our rooms are next to each other (we DEMANDED that the researchers overlap our visits) so I'll get to see ANOTHER one of my 'national' FX mom friends! I'll also brag about my article and our awesome family photo in the November issue.
But tonight dammit, I'll bitch, I'll whine - because I'm allowed.  Because even the strongest get tired of fighting.  And as I tell EVERYONE - you are allowed moments of weakness. You are allowed moments of grief.  It's OK, it's normal, and it's necessary.  I've gotta practice what I preach.  A moment of sadness....and tomorrow - I'll do whatever I have to do for my kid, because that is what us moms do.  Anything.  And I can't stand wallowing in crap.  It stinks in here.  Can someone grab me a Yankee Candle?
Plus - I'm procrastinating packing.  Maybe I'll finish tomorrow after I throw on my big girl undies.  Yawn.

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