Big Girls Don’t Cry

It’s really the small moments in life that can break you.  

I like to think I’m a tough cookie.  I’ve had a pretty shitty last few years and I want to believe I emerged from the embers like the phoenix, to overcome and conquer.  What I used to think is a hokey saying “Everything happens for a reason blah blah blah” – now, I do believe that.  Mostly.  When Owen was first diagnosed in 2010, I spent months awake at night, worrying and crying about his future and the future of myself and my family.  I. could. not. sleep.  Finally, being a therapist, I used a technique I teach my own clients called “Cognitive Behavioral Therapy.” I started by refocusing my thoughts by ‘being on a beach’ in my head, using all my senses to engage my brain and stop intrusive thoughts.  I became so good at it that now I can just flip the switch in my head and shut off the thoughts.  And frankly, I’ve never been much of a worrier anyhow.  

We Fragile X carriers come with our own host of related issues.  Fragile X is relatively newly diagnosed disorder – it has only been scientifically identified for about 25 years.  Most research has been conducted on our ‘full mutation’ children and very little formal research has been done on us carriers.  Some symptoms are proven – early menopause and ovarian insuffiency, while there are many other anecdotal symptoms suspected to be common in carriers – immune disorders, mood disorders, joint issues, learning disabilities.  

I like to be basic and break us down into two groups “Anxious, Anal and Organized” and “Wild Women.”  My own research (cough*my friends*cough) has shown me that some carriers are very anxious worriers, with an attention to detail, and many are successful and over achievers.  Then there are the ones like me – a little more free-spirited, disorganized, with a history of fun and frivolity.  Really, I think we are all the same, but us ‘Wild Women’ developed different ways of coping and became more rebellious.   I have never been one to think very long term, I’m impulsive and tend to focus on the ‘now.’  This has helped me in dealing with Owen’s diagnosis – I try to do all I can for him ‘now’ with the hopes it will benefit him ‘then’ – language development, behavior management and skill building.  This also helps me deal with my own grief and sadness – I will not think about the future….his future….that could be filled with judgement and teasing and dependence on money from the state and care from strangers and oh god what about when I die and…..FLIP THE SWITCH.  Off.  I try not to think or talk about this stuff.  I have enough to deal with on a daily basis, it does me no good to worry about the uncertainty of the future.  And I recognize and embrace the richness that has come into my life due to his diagnosis – shift in priorities, being happy in the NOW, and the many wonderful people I call friends, all members of my FX family.  My life has a meaning now that it had never had before (right Cindi?!!?).  

And sometimes, I forget there are others who must also grieve and cope with his diagnosis. 

My daughter Bridget’s bus stop is directly in FRONT of my house – quite a beautiful thing for someone slightly unorganized (slightly? HA!) and not a morning person – I MAY wait until the last possible minute to wake up.  Owen had already left on his van to his ABA classroom, which is in a different school within our district.  Bridget was sitting in a chair in front of the window, waiting for the bus (why would we wait outside? It’s COLD out there!).  She was watching our neighbor play with his little sister – Cam is in 3rd grade, like Bridget, and his sister is in kindergarten – just like Owen.  Bridget asks me “Will Owen ever go to the same school as me? Because that is what other siblings do when they get old enough.”  And I froze.  The mom in me wanted to bandaid that question – apply something soothing and reassuring – the child therapist in me said to shut up and ask questions. about HER feelings.  The mom in me won and I rambled about how he maybe will never go to her school, but for her to think about the many kids that would be in the town middle school, how many people we know in the district,  and how she will know SO MANY kids when she is eventually in the 2000 student high school.  I realize now I didn’t say any of that for her, but for me.  

I have never cried about his diagnosis in front of her.  I have never talked in front of her about my grief or resentment.  I have always tried to be a good role model, be resilient, teach her about empathy and acceptance and diversity.  I have tried to show her through my own behavior that we love and accept Owen for who he is  – truly loved, accepted, flawed and unique – just like she is.  Just like we all are.  Focus on the positives – and I suppose my uber-liberal-hippie-social-worker self finds that easy to do – I do it at work, for my clients, and I practice it in my life.  We are ALL equal, regardless of skin color, sexual orientation, social status, or disability.  It doesn’t matter ‘what’ you are, it matters WHO you are.  

But that question – that one simple question – “Will we ever go to the same school together?” – it broke me.  There was her loss laid out, her grief, wrapped up in those few words.  What she will sacrifice – the normality of a typical sibling.  Parents just want to give our kids everything they deserve – education, a happy life, a kitten and an iPad – and here was something I couldn’t give her.  Here was something that I had robbed her of – my genes did this.  MY genes.  No bandaid is big enough to cover that crime.  

Hours later, driving, I broke into tears.  Tears for FX are infrequent for me – but there they were.  And here they are again, just writing these words.  I can handle the loss.  The grief.  But GOD – to think of her loss.  It breaks me and my heart aches for her.  I know this is just the beginning of her journey – she will have a lifetime being his sister, while I will only have a half a lifetime with him.  

And as much as I want that huge imaginary magical bandaid, I know she is allowed her voice in this grief, and her own losses.  I just wish I could protect her from them. 

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Thanks to Shawna Shenette Photography for use of this photo.

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I’ve changed by not changing at all….

I’m in one of those semi-rare moments of contentment and peace (spell check just changed ‘contentment’ to ‘containment’ – however being locked up is not so rare…).  Maybe it’s just because I actually got some shit done today instead of procrastinating.  Maybe it’s because I have a long weekend coming up.  Maybe it’s a mere reflection on what an amazing year 2013 has been, and thinking about last Thanksgiving….

Last Thanksgiving was my first major holiday ‘alone’.  I had Jenn and Keith and my mom over for brunch.  I was racing around making eggs and pancakes and bacon and monkey bread and mimosas.  I was standing at the counter, pouring and mixing and flipping, and my eyes welled up with tears.  Tears of relief and happiness and peace.  My first holiday alone, free of fighting, anger and rancor.  A holiday with people I loved and free of tension (well, except the kind my mother causes me).  I was so thankful to finally be living a life  true to myself.  It was an unbelievable feeling and I was totally content in that moment, in that life, with those I love and who love me, and my two little pumpkin munchkins.  At night, I loved putting the kids to bed and coming down the stairs to a quiet and peaceful house.  I was ensconced in my little home with my children, my pets, a warm bed and plenty of electronics to keep me in touch with my friends near and far.  Content and peaceful.  

I am not the most demure girl.  If I had a nickel for every time someone has ‘shushed’ my very loud voice I’d be a millionaire.  Or a at least a thousandaire.  I had made some controversial choices in the past and I didn’t always pick the right path, and I know I have been judged for them.  I was a devastated confused girl free falling and desperately grasping at exit doors.  I won’t apologize for the mistakes I made, although the Catholic school girl deep inside me chides me for such pride.  But last November, it had all brought me to that day, my very grateful Thanksgiving of 2012, and I was happy.  HAPPY! Can you imagine? It wasn’t long ago that I couldn’t imagine ever being happy again.  

And the universe wasn’t done with me yet (‘ARE YOU DONE WITH ME NOW?? DIDN’T THINK SO.  CAN YOU CUT ME SOME SLACK THOUGH?? KTHANKS’).  That same month of November 2012 I joined match.com – I know, I know, but it is the new millenium and all the cool kids were doing it.  At that point my friends were sick of my regular texts begging them to hang out with me.  I needed a companion-type person to go to dinner and the movies with.  I could have gotten one of those service dogs but they are really pricey and are frowned upon when sitting on barstools.  I just needed a date because Uncle Bernie wasn’t going to cut it anymore.  

So I went on dates – I went on dates with all sorts of lovely dudes.  One tried to bring me to a strip club on my first date.  One resembled a troll (not that there’s anything wrong with that).  One texted me 27 times within the first 5 minutes after our first (only) date.  But I was only looking for a twice monthly companion, and my friends REALLY enjoyed the stories, so I went on dates like they were job interviews and assumed that the worst that could happen is that I could run out of one dollar bills.  

And then I met this dude – this tall, quiet dude, who watched me talk non-stop all night on our first date and laughed at all my jokes.  He didn’t even suggest a strip club until the 3rd date (KIDDING! He waited until the 8th.).  He noticed my little quirks, like how I play with my earrings and he complimented me on my smile and laugh and my walk and told me he loved my (loud obnoxious) voice.  He saw ‘me’ and liked me for who I was, and I wasn’t sure if any boy had ever done that before.  He was funny and sweet and smart and handsome and a phenomenal full time dad and he was…it.  I grew to respect him, loved his company, and his kiss brought me to my knees.  (Proverbial people, get your minds out of the gutters!)   And here I am this Thanksgiving, one year later, in another totally unexpected place.  

Life has become broken into two parts – “BEFORE” Owen’s Fragile X diagnosis and “AFTER.”  It feels like anything before 2010 is a gray haze of in-utero shadow memories.  And then BAM – the diagnosis – and the earthquake of Fragile X hit my life and since then life has become a reassembly line.  Keeping what fits, getting rid of what doesn’t, finding what is broken and replacing it with glue and tears and hearts, covering the broken places.   It has been change after change after change, and I continue to have waves of feeling overwhelmed and stricken by all that has happened within a short amount of time.  And through it all, I have had one constant.  This girl right here….Image

 

I knew her before she was conceived – the one thing I always wanted in life was a daughter named Bridget.  She was a part of me when I was still a child – Bridget is my middle name and I would berate my mother “WHY did you name me Kathleen??? There are SO MANY Kathys at school? Why didn’t you name me Bridget?”  But now I know why – because my Bridget was destined to come to me later.  

I never knew true joy was until she was born.  She was the epitome of a good baby – sweet tempered, great sleeper, great eater, and adorable (not that I’m biased or anything).  She was my mini-me, and I understood her.  We love the same things, suck at the same things, and I ‘get’ her because she is so much like me.  She is an old soul and very, very wise.  Also a huge wise ass – and yeah, don’t think I haven’t heard the old “wonder where she gets that from” joke umpteen times.  

Just as I have endured these years, so has she.  A brother with a disability.  Divorcing parents.  A mom who is dating – and dealing with other kids who want her mom’s attention.  And this week, the loss of our oldest dog, Georgia, our 13 year old labrador.   Bridget has been through so much and has amazed me with the ease, compassion and dignity she has shown through it all.  As Owen is my soul, she is my heart.  I think of this Thanksgiving, and all that I have to be grateful for.   And as I laid in bed tonight with my little girl – she will always be my baby, and I tell her this – and I stroked her soft cheek and ran my fingers through her long straight hair, and I thought how blessed I was to have birthed this little person.  This phenomenal, sweet, awesome, cool, funny, little person.  I am overwhelmed with gratitude at her presence in my life.  She doesn’t yet know her own strength, and I’m not sure she fathoms how much she has truly endured (although she will freely tell you how awesome she is).    I have 10 years left with this kid under my roof, and no matter how crazy she will make me when she is a teenager (maybeshewon’tmaybeshewon’tmaybeshewon’tokwhoamIkidding) I will never take her presence for granted.  

This Thanksgiving continues to remind me of how much has happened and how life has changed.  At this moment, I have a foot in each life, the old, the new.  It can feel precarious, not out of one life, not completely in another, still slightly shell shocked from all that has happened, and with a sliver of terror at the changes that are coming and will continue to come (some days more like a whole full pie of terror).  The word “overwhelmed” is one I use often.  I’ve been resenting my life limbo – I want to move on! I want the next phase already!  But tonight, lying with Bridget, talking and snuggling – it hit me that I need to accept this moment.  This place, this limbo, THIS is where I am supposed to be right now.  Here, with her, in this bed this time this space.  Today, she was 8 years, 4 months and 25 days old.  And she never will be that again.  

So we lay, and we talk, and we read together, and I am grateful for all that this year has given me. 

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Love.  Loyalty.  And definitely, lots of luck.  

Where’d you go?

I know it’s bad when even Leah’s Aunt Carole from England is asking her why I’m not blogging.  I could give you a laundry list of reasons, some truer than others -procrastination, insomnia suffering, being happy, having other people involved in my life and wanting to protect them – maybe even wanting to protect myself.  

For so long, 3 years now, my blog was where I turned when I had no where else to go.  It was where I could vent, inform, educate, but mostly a place I went when I was devastated and desolate, grieving and lost.  Almost all the significant changes that have happened have been directly and indirectly connected to the publication of my old blog in BayState Parent Magazine in November of 2011.  Never one for subtlety, I did totally explode my life right around my 40th birthday in April of 2012, and have been picking up the pieces and reassembling the old and the new.  

I wake up everyday and thank the universe for the people it has sent me these past years.  The support I receive from my friends is one of the only things that can leave me speechless. I also know that as I have begun to live a life true to who I am, I have become more available to be a friend to those people also.  I am no longer hiding myself and my shame, my guilt, and the nagging voices in my head that I tried so hard to repress.  As I live a life of realness, I attract people who also do.  As I live an honest life, people have appeared as my angels.  I could not have a better cheering squad in my life.  I’m a lucky, lucky, lucky girl.  

And yet – I’m still in limbo.  Life is still assembling but isn’t done – and really, is it ever? I’ve been separated for over a year and a half years but still not divorced, although classes have been taken, mediation conducted, and papers almost filed.  And although not divorced I have met someone and am very much in love.  And he and his family have become a huge part of my life, however they never signed on to this whole ‘public blog persona’ and I feel a need to protect them.  And I also (thank you Irish Catholic guilt) feel bad writing the next chapter when the last one isn’t completed.  So there is my life limbo.  

I am living a life I never thought possible. I never knew you could live an imperfect life and yet be so fulfilled and happy.  I had no idea that life could change so drastically for those you love and yet continue on and become even better.  I didn’t think it was possible for me to ‘do more’ – and be more and have to handle more – and yet still feel complete.  I never believed in destiny until I realized that everything I have been through has brought me to here – and ‘here’ is wonderful and exactly where I am supposed to be.  

Is it easy? No.  Dating at 41 and all that comes along with it is a HUGE adjustment.  And as Leah has said (I’m stealing her quote) “Owen still has Fragile X.”  He is adjusting to kindergarten, he is still mostly non-verbal, he had 3 restraints in school a few weeks ago, another toilet clog, kitchen flood, several vomitting episodes INCLUDING one in the middle of Pub 99 (I caught 90% of it on a plate – SO impressed with myself!).  So easy? No.  But I never expected life to be easy.  My dad was diagnosed with cancer when I was 14 and died when I was 19 – I learned at a very early age life was not handing me unicorns and kittens and cookies.  Many people grieve for a lifetime when their kid is diagnosed with a disability.  I refuse to do that, but I also accept there will be times that the wave of grief hits me.  

My boyfriend and I signed our girls up for gymnastics.  Night one – waiting room was MOBBED, tons of people, Owen was a huge grump and I knew…just knew…it wouldn’t go well.  He was in a frenzy, running, opening doors, trying to escape.  We finally took turns waiting in the car with him while the other adult watched the girls through the viewing room window.  That night devastated me – FUCK I just wanted to be NORMAL and be able to watch the girls like all the other parents! I worried about how his diagnosis will affect my daughter and my ability to participate in her life.  I just wanted to WATCH OUR KIDS like everyone else.  So I had a ‘why me’ night, cried a little, and the next day I called the gymnastics center and set Owen up with his own private class with an instructor who has experience with kids with special needs.  In other words, I put on my big girl undies.  

And he loves gymnastics. So there ya go.  That is where I have been.  Living, loving, fixing, surviving, rearranging, changing and being with the people who love and support me.  I’m happy, probably for the first time in my life.  I’m lucky.  I’m blessed.  And I am so, so excited for the future and what lays ahead for me.  

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Beautiful Boy….

My little boy turns 5 years old today! As the kids say, I’m shaking my head – I have no idea how 5 years have passed in the blink of an eye….and I’m happy to say, my sadness has left like a fever has broken.  Woke up Tuesday and – snap, it was gone.  Asking for help and support, writing this crazy blog, getting messages and emails and words of thanks and encouragement and understanding.  All of it helped.  

And last night, we celebrated.  

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He was thrilled with all his Teenage Mutant Ninja Turtles presents…..and enjoyed his party with his family and friends.  ImageImageImageImage

When the Levee Breaks….

It’s Fragile X Awareness Day! Do you KNOW what Fragile X is?? If you know me, my kids, or read my blog, I hope to hell you do by now.  And today I am NOT ‘celebrating’ it, I am mourning it.  

It has been a rough month for me.  It all started a month ago, when Owen “graduated” from pre-school and I attended the little pre-k ceremony they have.  

The pictures below are a great example of how people can use facebook to put forth a happy smiley face when all hell is breaking loose….

ImageOmgoodness! Look at how adorable he is! Look at how much fun he is having! However this picture doesn’t include the total meltdown he had while I was there.  He threw chairs, picked up and dumped out the trash, and used his aide as a punching bag, hitting and biting her.  I sat with a fake smile on my face watching the adorable slide show, and I could feel everyone’s eyes on me, and I could see the pity in their eyes.  Owen just couldn’t handle it.  He couldn’t handle me being there, the change in routine, all the DIFFERENCES threw him off and he lost it.  And that was my pre-k graduation.  How was yours? 

On Thursday he’ll be 5.  He is still non-verbal.  He still wears diapers.  I still have to put him in the cart at the grocery store so he won’t take off.  Our Ipad has been dropped down the stairs and thrown against the wall, part of the screen is shattered but it is held together by duct tape – because if I don’t have an ipad I don’t get to do ‘normal’ stuff like take him to a restaurant or Walmart.  He’s on 3 different medications – Zoloft for anxiety, Tenex for ADHD symptoms, and Melatonin for sleep.  This year he had an obsession with flushing things down the toilet – the plumber came no less than 4 times to unclog it.  On Easter it started raining in my kitchen because he had flooded the bathroom above.  He is over 60 pounds and at almost 5 years old, is wearing size 7 clothes.  On his first day of summer school I had to physically put (wrestle) him into his van because the change of bus driver freaked him out and he refused to get in.  

In September he’ll be transitioning to kindergarten.  Not to Bridget’s school, but a continuation of the Applied Behavioral Analysis classroom where he is now, which is in a different town.  New teachers, new aides, none of whom know anything about Fragile X.  His classroom is for children with autism – and although many kids with Fragile X have an autism diagnosis, he does not.  And during his preschool graduation it became very apparent to me that he isn’t like those kids either.  I’m going into his new school to conduct a training on Fragile X in early August.  More educating educators. 

And the grief comes in waves.  Bridget’s birthday in early July was very hard for me.  Bittersweet.  Because every milestone for her is the only ‘typical’ child milestone I will get to experience.  Triggers for grief are everywhere, every day.  Seeing another same age boy on the playground.  Hearing parents talk about “Enjoy your children now, some day they will leave you!”  Owen won’t.  He will always need my care.  Worrying about how he will be perceived and treated….as a child, as an adult, after I die…who will be responsible for his care…

I do a pretty good job hiding it, including from myself.  I push it aside because I can’t live in the daily grief.  It’s no way to live.  And then, suddenly, my ass gets hit and pushed down by a wave and I.am.drowning.  I think horrible thoughts.  I think “I can’t do this. I can’t.”  I think of suicide.  I put Owen on the bus, I bring Bridget to camp, and I go back to bed.  I sleep.  

I confide in a few people.  “I’m depressed.  I feel shitty.”  People look at me surprisingly – “WHY??” they ask.  And I think yes, why? Aren’t I ‘over it’? Aren’t I ‘better’?  Hasn’t my life improved a million times this past year?   And I think no, kind of, and yes.  

Having a child with a disability is a loss.  It’s a loss of hopes and dreams for your child.  A loss of normalcy.  A loss of baseball games and Disney world and photos on the first day of kindergarten.  Of college graduations and weddings and grandchildren.  That loss NEVER GOES AWAY.  We live with it.  We put it aside, smile, move forward and live with it.  And every so often, the wave of grief hits.  And man, does that fucking wave hit hard.  I’m always surprised when it hits me.  Because like you think, I AM SUPPOSED TO BE OVER THIS.  And I’m angry with myself for feeling weak and sad.  I’m Irish.  We are supposed to be tough non-emotional mother fuckers.  I hate the wave of grief.  It breaks me.  

Last night, out of desperation I turned to the one place that has the people who ‘get it.’ Who truly understand….The Fragile X room on Facebook, where there is over 1600 members across the globe. And I posted this….

“OK. So I need a minute to bitch and have a pity party. Please excuse my complaining. And excessive use of ‘f’ word. 

SO it’s Fragile X awareness day tomorrow. I AM FUCKING AWARE, OK!!??? 
I have had a miserable July. My (typical) daughter turned 8 and it threw me into a tailspin. Which I was SO surprised about although 
a. I shouldn’t be, it’s normal. 
b. In retrospect I have had a few (all) rough Julys since Owen’s diagnosis in 2010 (both kids’ birthdays in July). 
c. He’s turning 5 this week, is still non-verbal, and is starting kindergarten. 

And everyone around me is like “What is wrong with you?” Because, you know, I hide it well and don’t worry most of the time, and don’t talk about it, or complain. Because no one really wants to listen, they just want you to be “over it” and all better and back to your perky self again. 

And when I actually decide to open my mouth and confide in people, they look at me SURPRISED! ‘What, you are still upset about THAT?’ And I think to myself, I KNOW RIGHT?!!?? I thought I was BETTER also! And I want to explain that thoughts of FX colors so much of my daily life – but I just shrug it off. But they.don’t.get.it. They don’t fucking get it. 

Fucking grief sucks. I wish it came with a warning label. “Caution, contents of this person can explode at any time. And really, it’s not you. It’s the grief they keep hidden that occasionally combusts and kicks their ass. Do not take personally.”

K, thanks. I’m all better now. ;-)”

So far, the post has received over 60 comments.  All from other parents saying “I hear you.  I know this feeling.  You are not alone.”  My beautiful, gorgeous, unbelievable sweet friend Amy commented “lady, i love you. you are simply saying what we all feel at different times. Mostly, we ride the waves. We have a soundtrack for this freaking roller-coaster because we’ve been on it so many, many times. Then, out of nowhere ( or July) Fragile X comes and kicks us in the arse… and our hearts break again. and it takes TIME to move on- we never ‘get over it’… we carry it with us, sometimes in the back of our hearts, sometimes right in the very front. xoxoxo”

I love that – we carry it with us, sometimes in the back of our hearts, sometimes in the front.  So true, so poignant.  

And my heart, my soul sister Stacey wrote “You can’t “get over” a piece of your heart. O and. B make up the fabric of your soul. Some days it will stretch, some it will be crinkled into a ball and sadly some days it will tear. But you will always be able to repair it because of them.  Love you lady!!!”

And thank you to EVERYONE who commented on that post.  I would love to quote you all.  Comments of support and love, lots of virtual hugs, comments of understanding.  

And for one last stolen quote, this time from Cindi Rogers, I thank you, all my friendships born from Fragile X, for being the very best part of this journey.  My local moms, my birches, my friends across the country and across the pond….thank you guys for ‘getting it.’  I will always need you, and I know you will always be there for me.  

My baby, in pictures.

IMG_0344 I don’t want to work, I just want to bang on my drums all day….

IMG_0423Compilation of his school pix from 2013

IMG_1205York, Maine

IMG_0586I can swim AND watch Spongebob?? This place is GREAT!

IMG_0607 As “Humpty Dumpty” in his inclusion class.  Kid is a total ham.

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Lastly, some photos of Owen and I sitting in front of our house, watching cars go by and making faces.

 

When it’s time to change, you’ve got to rearrange.

It’s time.  Time to start over.  My old blog, like an old friend that you still see, yet no longer have anything in common with, doesn’t fit me anymore.  I started it in November of 2010, only 6 months after Owen was diagnosed with Fragile X, and I was angry, and devastated, and grief stricken.  I was lost.  I was living a life that I knew was wrong, and was trying as hard as I could to ignore the voices in the back of my head that kept repeatedly reminding me.  I had lived with those voices for so long, but eventually it became impossible to drown them out.  I tried, and I tried HARD in so many unhealthy ways.  I was living a life of dishonesty – to myself.  

I’m not that girl anymore.  I’m at peace with who I am.  I have made some difficult choices that wrenched my mind and wracked my body, wreaking havoc on my gastrointestinal system and exploding my life into thousands of desperate shards.  But now I am living a life where I am FINALLY true to myself, and the voices in my head have quieted because they are congruent with the way I am living my life.  I am far from perfect, though I still wish I was.  I am finally ‘good enough’ – for me.  And that has given me a sense of peace that I never thought possible.  Freeing myself and listening to my gut has left me open to receiving love and happiness I didn’t know I could experience – and frankly, after Fragile X, never thought I WOULD experience.  But here it is, and here I am, and I needed a new place to start over and write and share.  I love my old blog, like my old friend, but we no longer “fit” anymore.  

So thanks for sticking with me.  I hope you won’t hold my past against me, and I pray you will continue with me on this journey.  
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