Friday, June 7, 2013

Dear John....

Dear Blog - I laughed, I cried, you were better than "Cats."

I really really really want to keep writing, but when I show up here to do so, you're just not right for me anymore.  I see what you've gone through, and how you've suffered, and how you have supported me, but it's just not right for me anymore.  It's not you, it's me.  No, actually, it's you.

Don't get me wrong.  I'm proud of what we have been through.  You've been published, you have had a lot of good to say, and you changed my life - for the better.  You really did.  You listened and were there for me when no one else was.  You were my only outlet for my devastation and grief.
AND you also caused a SHITLOAD of drama. DRA-MA! You didn't just change my life, you threw a grenade on it and exploded it into millions of insane pieces.  Totes cray cray.

You gave me lots of good stories to tell my friends.  Book material, frankly.  But we have reached the end of our relationship.  I'll still send people here, don't worry.  (However I won't miss seeing the disgusting and creepy search terms that have brought some perverts to this site.)  But I hope that my real followers - my true friends - follow me to my new blog, my new life, and my new happiness.  I'll always have a special place in my heart for you.  I may even miss you, just a little. And truly, I can't thank you enough for what you've done for me.

Follow me, follow into the next chapter, and let's leave the bitterness behind (but the sarcasm is coming with me).

http://afragilelifexamined.wordpress.com


Thursday, February 14, 2013

Heart's Content - This is a New Year.

Happy Valentine's Day everyone!  It's a day that strikes both fear and expectations into the heart of many, whether you have a Valentine, want a Valentine, want to stab an ex-Valentine, or are greatly dreading buying for your Valentine. Or, as my friend Delia said succintly on her Facebook status today  "Please do not hold back on posting pictures of flowers/chocolates received today as dateless fucks such as myself seriously cannot get enough of them xoxo."  

After a busy and insane week, I now lazily in bed, drinking coffee, websurfing, twittering, facebooking and OD'ing on social networking, and I feel content.  Happy even.  It was a slightly over a year ago when I published the blog "Happiness" - which to date has been my most popular blog EVER.  E-V-E-R!!!!  In it I wrote "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."  (Isn't it totally pretentious to quote one's self? I'm such a douche.)   Then I proceeded to go through 6 of the hardest months of my life while making those decisions.  

I chased down the fucking bluebird of happiness, though the route took me straight through zip-a-dee-do-da hell.  Those things don't fly straight paths, ya know! And now, one year later, having come emerged to other side....Whew. Sigh. Relief.  BLOOM!  I think of the many people who supported me, loved me and encouraged me through it all...and how LUCKY I was to have such a great support system.  I still truly feel so very, very lucky and blessed for the great peeps in my life.  And now, this next month, a repeat to last year's - a month that looks much the same yet life is so very different.  

Another - our 2nd annual! - Fragile X Moms' Weekend Away this weekend! It's gonna be EPIC!!! I'm SOOOO looking forward to it -  and we are no longer "Seven Strangers", but 7 (8, 9, 10 and counting, as our group continues to grow) FRIENDS.  Close friends who communicate and support each other daily - crying together, confiding in each other, giving each other shit.   In the past year, we have continued our FXMNO (Fragile X Moms' Night Out, for those slackers who don't keep up with my blog) punctuated by more get-togethers, and as the onion layers of our personalities peel back, we have continued to get to know each other.  It has been truly awesome to have these ladies become such a huge part of my life.  They're my soul sisters. 

And in a few more weeks, I'll be heading back down to Washington DC for Advocacy Day.  I suppose it's 'my' 2nd annual AD!  Getting to see all my beloved 'national'  friends, I'll also be getting the chance to meet all my 'new' virtual friends, and I'm sure I will get a chance to expand my ever-growing "Fragile X Family" with more strangers who will become family.  


Advocacy Day was one of the best things I did for MYSELF last year.  Did I originally do it for Owen? Yes.  But it became the highlight and a significant turning point of last year.  While I was there, I realized I was capable, likable, accepted and that I was NOT alone.  That the tentacles of Fragile X spread throughout the state and throughout the country.  I had felt alone and isolated in my grief and sadness, feeling 'that no one would ever understand,' and always feeling worthless.  Now, I am never alone, even in physical solitude, and I realize I AM pretty fucking awesome.    

So I lay here, having no idea what the future will bring.  Having no 'great life plan' other than getting to summer, wearing bare feet and sundresses.  (Oh, and also that whole "changing the world" thing too.  But I do that daily.)   For now, I'm just looking forward to spending time with the people who I love, and who love me.

I'm content in my 'now' - and I'm HAPPY in my now.  I don't need all the answers -  I don't need ANY answers - because life does not come with written guarantees.   This moment - this moment right HERE - is a great one.  

I finally followed my gut and somehow became the person I always wanted to be- strong, independent, shameless, lovable, brutally honest and competent.  My path will not always be easy, and the not-so-distant past was suck-ass, but as Emerson said "What lies behind us and what lies before us are tiny matters compared to what lies within us." 

I saw this song on "Glee" a few weeks ago - and it spoke to me.  Watch it. Now.  



I will give the world to them.  


Another year you made a promise
Another chance to turn it all around
And do not save this for tomorrow
Embrace the past and you can live for now

And I will give the world to you

Speak louder than the words before you
And give them meaning no one else has found
The role we play is so important
We are the voices of the underground


And I will give the world to you

Say everything you've always wanted
Be not afraid of who you really are
'Cause in the end we have each other
And that's at least one thing worth living for


And I would give the world to you

A million suns that shine upon me
A million eyes you are the brightest blue
Let's tear the walls down that divide us
And build a statue strong enough for two

And pass it back to you
And I will wait for you

'Cause I would give the world
And I would give the world
And I would give the world to you

This is a New Year
A new beginning
You made a promise
You are the brightest

We are the voices
This is a New Year
We are the voices
This is a New Year

Monday, January 28, 2013

Just Open Your Eyes.

To understand that life is beautiful, you must have experience pain, seismic events, catastrophe and struggle.  Then, you must go through the pain, feel it, and emerge on the other side.  Forever scarred but wiser and clearer.  It is then, and only then, you see true beauty.

Beauty in the love between siblings. The kindness of Bridget making a bed on the floor for Owen, because he was out of his bed, and "he likes to lay on the floor Mumma."  There's a Spongebob pillow, a blanket for the base, and another blanket she had carefully laid on top of him, and he lays calmly in his floor bed that she has made for him, contentedly sucking his thumb.

Before bed, after baths and teeth brushing, wrestling the Ipad from Owen's hands, he prepares to flop on the floor and kick and scream and thrash in the detox of Ipad from his system, and I grab him, and hop into bed with Bridget.  His back to my front, laying on top of me, one arm around him, his belly, and the other around B.  My babies.  He breathing stabilizes and slows quickly and I can feel all 50 pounds of him get heavier as he relaxes on me.  My touch, relaxing, calming, my breath as his, just as we were 5 years ago when he was still inside me.  My baby boy full of life changing surprises.

And my other baby, my baby girl, underneath my arm, and I'm running my fingers through her hair, fingernails against her scalp, as I slow to a stop she grabs my hand and puts it back on her head.  And the three of us lay there, in a little twin bed, our breaths and bodies intertwined, as only a mother and children could be, the plastic starry sky shining above us.  And there is beauty in this, this fleeting moment of childhood and love and routine.  The quick deterrent of flops and meltdowns, the gathering of my childrens' bodies in my arms, as I gather the pieces of their lives, hold them together, put them back together, make them feel safe and loved and protected, as only a mother can.

The confession of loss, of love, of sadness.  The admittance of wrong and the vulnerability of truth and grief.  The beauty of someone baring their soul, full of amends and regrets.  The glimpse of what could have been.  The slow, painful grinding noise of gates closing on an old life.  To know I'm not loved by some, but hated, and the beauty of truly accepting of that.  The skin, once thin, is stronger through the scars, and to feel the truth hit me, and yet ricochet off instead of embedding under my skin....There is beauty in pain, because there is beauty in truth and raw emotion and acceptance.

There is beauty in watching your child struggle and make mistakes.  Watching her flippant reaction and as her consequences increase, watching the burden of her decisions begin to weigh more heavily on her until she breaks, and cries, and then accepts her mistakes and learns to embrace herself, not as perfect or broken but merely as herself.

There is beauty when she looks at me with her eyes shining from tears and says "I don't want you to be disappointed in me Mumma.  I want you to be proud." It is beautiful to watch her learn and grow in front of my eyes, in one mere day, as she realizes how her choices can impact her life and her relationships.  And through this humanness, she also opens herself  to ask questions about her life and her future.

She learns not to condemn herself for something that is merely a part of her - her personality, her liveliness, her openness, her confidence and lack of fear.  Just as Fragile X is a part of us, and Owen, it's not wrong or bad, it just...is.  And it is beauty to see that I can teach her.  Teach her that 'we are who we are', and our perceived 'defects' are often nothing but our true strengths.  To be 'chatty' is to be outgoing, friendly, fun, spunky and confident - now let's learn when to harness it and learn where we can let loose.  And understand that regardless, she will be accepted and loved.

And it dawns on her that her consequence was a not a result of 'who she is' but her behavior.  And we discuss ways to use her strengths for good, 'not evil,' and I see her grow.  I see her learn, right in front of me, so many life lessons in a short time, and I see beauty.  Beauty in my children, what I have created, and beauty in me.  In what I can do, and how I respond, and how I can be both a firm and loving parent.  I can see the beauty and strength in me, never more apparent than in the hard times, the difficult times, the pain-so-searing-it-will-break-you-times - and then the 'show 'em what you're made of' times.

And we lay in bed, under the stars, we three, she whispers "I love you so much Mumma.  I love you as much as you love me."  And we talk about the sign for infinity, a "Number 8 laying on its side," going around and around and around, never ending, and I tell her I love her more than she knows.  I hug them close, and we breathe, and I recognize the beauty of this moment - a finite moment in an infinite love.  Life is not easy, it is cruel and unfair and unkind, and even that is beautiful, because it reminds us of our humanity.  And it rewards us with these moments, and we know amidst the pain - because of the pain -there is beauty.

Everyday.  



Saturday, January 26, 2013

Post Traumatic Growth.

See, told ya I'd be back soon.

I was reading the February edition of Marie Claire magazine and when I got to the article about Karina Hollekim, I started to cry.  Crying in recognition of myself.  Karina was a lover of extreme sports - skydiving, paragliding, BASE jumping (that's not the part where I saw myself, I don't even like standing at the top of the stairs) -  and she shattered both legs during a skydiving accident.  What struck me was this part of the article....

"The realization and the dramatic changes that followed are hallmarks of a remarkably common psychological change called post-traumatic growth. The term was coined in the early '90s by psychologists Richard Tedeschi and Lawrence Calhoun, a pair of clinicians and researchers at the University of North Carolina, Charlotte, who began by surveying hundreds of people who had survived severe injuries or lost a spouse. Over and over again, the researchers heard how those terrible events had sparked changes in the victims, who reported experiencing feelings like a renewed appreciation for life, new possibilities for themselves, enhanced personal strength, improved relationships, and spiritual change. Understanding why some people experience this kind of growth has become something of a hot field in psychology. (The U.S. Army, for example, is currently conducting a large study of post-traumatic growth in combat veterans.)  The kind of personal growth Hollekim experienced requires what researchers call a "seismic event" so devastating that it compels a re-evaluation of one's core beliefs. And, in doing so, the survivor reconstructs his or her sense of self, becoming a better, wiser person in the process. You hear human-interest stories like it all the time on TV (the battle-scarred soldier who decides to devote his life to helping others, for example) and in pop culture (if he had never witnessed the death of his parents, Bruce Wayne would never have become the defender of Gotham). Growth is the archetypal hero's journey. There's still pain and suffering, of course — studies show that those with the worst cases of PTSD report the most growth — but it usually results in a hard-won sense of wisdom, a fuller life lived with more meaning."
(Jim Rendon, author)

Ho-ly crap.  As I therapist, I know about Post-Traumatic-Stress-Disorder - as a matter of fact, I specialize in it.  But I have never, ever heard of post-traumatic growth as terminology.  Sure, I was aware that it could occur, that 'what doesn't kill you makes you stronger' and all that other bullshit - I have seen clients struggle and emerge stronger - but to read that it's something REAL, it's being studied, it exists - and I suddenly realized it's happened to me.  IT HAPPENED TO ME.  Tears.

I like answers.  I like Google.  I like to understand why I do what I do and why my brain works a certain way - I like insight into behavior.  This has always helped me function and survive in life, to be able to understand the people around me - it started when I was a child.  Learning about behavior helps a child survive in an unpredictable environment.  Gaining insight into people helps foster understanding and forgiveness.  Looking into myself helps me be aware of my interactions with others, with my clients, and improves my ability to help others (a very important lesson for me has been learning when to SHUT THE FUCK UP.  Still working on that one).

Seismic event - I'm pretty sure that Owen being diagnosed with Fragile X when he was just a baby, my little baby boy, qualifies.   There is a blankness to the next year - a gray foggy haze of memory - of tears and grief, of suicidal thoughts, of barely being able to function.  And then...I slowly started to  outreach for help.  One simple sentence in the Fragile X facebook room - "I don't think I can do this."  Starting to write my tiny little blog, just for friends and family, but mostly it was for myself.

And then the event that turned my world upside down - my blog being published in BayState Parent Magazine.

It started small - I won a contest.  They were giving away name stickers, about 5 different names, one of which was "Bridget" - I quickly emailed the editor and 'won' them.  We messaged back and forth about them - they were reusable, adorable, and hard to find (YOU try finding things with the name "Bridget" on them).  Then, within a week, I see a post on Facebook that they were looking for a kid with special needs to be a cover model.  I had JUST had Shawna take our family photos, and I figured, hey, what the heck.  I TOOK A RISK.  It's what I tell everyone to do - clients, friends - just take a risk.  Put yourself out there.  I sent the editor our family pix, a link to my blog, and a link to the National Fragile X Foundation.    Within days she called and said "Kathleen - we want to put Owen on the cover.  And....we want to publish your blog."  And I took another risk, and said yes.  Put my whole life out there, to be seen and judged.  It wasn't easy, folks, and we all know I was pretty upset when the negative letters to the editor came rolling in.  But I was weaker then, more insecure, more scared.  More thin-skinned.

I took a risk, and the risk paid off.  Becoming published and then becoming a regular freelance writer for BayState Parent.  Joining the DCF board.  Posting in the FX facebook group and becoming part of a group of local FX Moms.  Going to DC and advocating for Owen - and then becoming part of a national group of FX friends.  Going to the International Conference in Miami, gaining INTERNATIONAL friends, being interviewed on camera for the Foundation.  Going to California and meeting with world renowned experts in Fragile X.  Quitting my job, leaving my marriage.  Risk after risk after risk.  Much of that wasn't easy, and I often fucked it up.  Twas not a 'smooth transition' shall we say.  Some parts were excruciatingly painful, and others were beyond stressful.   Obviously, some both, and much of it sucked - big time.  But they paid off.  It all paid off.

I love writing, and I love interviewing for my articles.  I'm probably the chattiest interviewer EVAH.  I was at Wheelock College Theater on Friday for my next article, meeting with professors of education and the producer of the theater.  We talked for two hours about disabilities, 'abilities,' education, theater - and at the end of the interview the producer said to me "I've been interviewed many times through my years at the theater. But this interview was like one I've never experienced."  And then they asked me to come back and speak to their classes.

With Owen's diagnosis, I saw nothing but doors closing and my life ending.  And yet, since then, so many more doors - vital ones, important ones, ONES THAT MATTER - opened.  And I realize "THERE IS MORE FOR ME OUT THERE."  I can FEEL it.  Feel it in my bones.  There is more for me.

Yes, there is a part of me that feels very guilty.  Feels guilty that my little boy had to have Fragile X so that my life could become better.  It sometimes feels as if  *someone* was saying "Fine, if you won't change your life, I will."  I'm not sure if life is pre-determined, but it can feel that if you don't bend to its will, it will make you bend.  And you can bend until you break, or you can be like a birch tree -
"The birch is highly adaptive and able to sustain harsh conditions with casual indifference. Proof of this adaptability is seen in its easy and eager ability to repopulate areas damaged by forest fires or clearings. Bright and beautiful, the birch is a pioneer, courageously taking root and starting anew to revive the landscape where no other would before."

The kids' godfather said to me a few weeks ago "You're so much more competent than you were 3 years ago."   Post traumatic growth.  "Renewed appreciation for life, new possibilities for themselves, enhanced personal strength, improved relationships, and spiritual change." 


TAKE RISKS.  TAKE THEM.  It's ok to be afraid, it's normal to be afraid, and sometimes, yes, you will fall flat on your face.  But without risks there is no growth.  I always say to my clients that love is a risk.  Fine, don't take the risk, and you won't get hurt.  But without risk - and without love - there are no rewards, either.  Take risks, be like the birch tree, and allow your life to grow from trauma - it will, I promise you, it will.













Monday, January 21, 2013

Stop with you and all that fucking procrastinating.

Yes, I know, I know.  I'm a horrible blogger. I'm a bad girl.  Please, hit me in the nose with a newspaper.  I have been TOTALLY (one of my favorite words, not to mention favorite to emphasize as if 14 year old girl) neglecting this blog.  It's one of those things that languishes on my 'to-do' list, and runs on the hamster wheel of 'shoulds' in my brain...should write more, should be better, should clean, should walk the dogs, should write thank you notes and return those calls and should....be more perfect-er.  (Hey, it's MY neglected blog, I can make up all the fake words I want OHHHKAY?).

Something significant and momentous has changed in my life - I. Have. WIFI.  WIFI!! Oh my lordie it is the best thing EVAHHH and I love it more than my kids.  Kidding! I love wifi equally to my kids.  I love to lounge in bed after throwing the kids in the bus, browsing my laptop and drinking coffee.  Frankly, I've thought many times about bringing the coffee machine upstairs to put on my bedside table BECAUSE THEN I WON'T HAVE TO MOVE FROM BED.  Ahhhh, that is my idea of heaven.  So thank you BJ Hill and your amazing technological skills, because in your purely nerdy IT way you have improved my life.  Watching Netflix, surfing the web, reading books and magazines, on-line porn, sighhh. Heaven.  So now, NOW - I really have no reason not to write. Except I'm a busy single mom of two kids and a business owner, with about 17 volunteer jobs and I'm...well...lazy.  THAT'S RIGHT I SAID IT.  I procrastinate writing, perhaps because I expect or need it to be some deep philosophical bullshit that makes my peeps  both laugh and cry.  I LOVE when people tell me it makes them cry.  So I think I procrastinate because I worry it won't be stellar and emotional, I laughed, I cried, it was better than 'Cats.'  Procrastinators are perfectionists.  Like right now - my kids are hungry and I'm procrastinating cooking them breakfast.  Oh wait, that's lazy.  Well that and I neeeed moooore cofffffeeee.  Bring the pot UP!

An update about the fam...Owen is doing well.  Much better, actually.  What I did NOT disclose in the blog was that he was increasing aggressive in the fall.  Fragile X is characterized by symptoms of 'hyperarousal' and 'overstimulation.'  It's comparable to when you go to Chuck-E-Cheese and within an hour (or less) have a huge headache due to all the sounds, kids running and screaming, and gunfights.  That is how every day is for a kid with Fragile X.  Anything that is transitional or out of schedule - even the TV or his sister being loud - can overwhelm Owen.  Getting on the bus.  Walking through a doorway.  He reacts with the 'fight or flight' mechanism - escape or flailing or flopping (falls to the ground, stays on ground rag-doll style).  So if the TV is on really high AND Bridget is non-stop talking, and she gets too close to him, he would 'swipe' (like an off-the-mark slap) or hit her.

I was starting to see it more and more, and she was his main target.  I can deal with a lot, but I have NEVER ever been a fan of violence or aggression, including in my counseling work.  I've always told parents to never allow it, including from young 2 or 3 year olds.  Nip it in the bud, folks.  So when he started to hit her, often, I was upset.  Very upset.  Devastated even.  And it felt like 'nothing worked.'  Addressing negative behaviors often reinforces them, so I was struggling with how to decrease it.  He was swiping at his bus driver in the morning, or other kids on the bus, or his teachers and friends at school-ugh.  Not just upsetting, but scary as his mom - how would this bode for the future?

I called Boston Children's Hospital and insisted on an appointment with his developmental pediatrician.  They attempted to blow me off for another month because that is when his typical 6 month appointment would be, but you know me.  So within a week we were in there, and I knew exactly what I wanted. Zoloft.  Noooo, not for me silly (I have beer) but for Owen.  Anxiety is one of the main reasons for the hyperarousal and overstimulation symptoms (which are technically more complicated and related to scientific stuff, like lack of production of a the FMRP protein myself).   Many kids with Fragile X are on an SSRI (otherwise know as anti-depressants) like Zoloft or Prozac; they also help reduce anxiety.  There is a study going on right now at the MIND Institute by Dr. Randi Hagerman about the usefulness of Zoloft, so that is the drug I wanted him on.

Thankfully, our developmental pediatrician, Dr. Rappaport, loves me.  He's told me many times I am a 'great advocate' for Owen, and he somehow even trusts my judgment.   Even though I have been known to argue with him at times, which has been pointed out to me by the kids' dad "You will even argue with the HEAD and CHIEF of developmental medicine at CHILDREN'S HOSPITAL" (what, I'm smarter than EVERYONE!!).  I asked Dr. R during this visit if I was a pain in his ass - and he looked at me surprisingly and said "Have I ever said that to you? No, I think you are a phenomenal advocate for him!" (Did you hear that beep? That was me tooting my own horn).  Plus Dr. R knows I'm smarter.

We started O on the Zoloft.  First a tiny little bit at first, .05 mls.  I don't even know what that it - 10 micrograms I think? Then, after a month, we went up to 1 ml.  It. Has. Been. Fabulous.  Transisiton are soooo much smoother, aggression/swiping has significantly decreased, his behavior has improved.  It's been awesome.  Throw in our new Ipad and I can take the kid anywhere now.  Even grocery shopping with them both has been easy - the magical formula is a car cart, iPad, and stolen apple (stolen because by the time we get to the checkout it's allll gone.  Sorry Price Chopper, we are thieves.)



Another very exciting update is POTTY TRAINING.  If you've every had to change the diaper of a 50 pound boy, you'll feel me on this one.  It ain't pretty.  He's been FULLY potty trained at school for about 2 plus months, but at home, naaah, he's got a sucker of a mother to take care of that for him.  At our monthly clinic meeting in December his teachers yelled at me (or questioned and encouraged me) to get on the ball.  Finally, over winter break I used the Ipad as a reward and BOOM.  That was it. Potty trained all day long.  Course, he's naked all day long, as anyone who visits my house or even sees my pix on facebook can attest to, but hey, whatever.  As long as he's peeing in the toilet and not the linoleum I don't care WHAT he's wearing. Or not wearing.

We also just finished up our MIND study this month.  After 5 months of Cali visits, we had 3 months of follow-up Skyping and ongoing monitoring.  I thought I would be happy when it ended - it's been so very very helpful, has taught me so many skills to help his language and behavior, but was also a part time job - but I was soooo sad when it ended.  These people, our 'girls' - Ashley, Monica, and the head researcher Andy - have been in our lives for 9 months.  They have seen us at our worst.  They have guided me through tough times, not judged, and been supportive and caring.  I KNOW they genuinely care about us.  So at the end of our last Skype session, saying goodbye, trying to express to them how they have helped us - I choked up.  Welled with tears even, dammit.  The Fragile X community - both families and professionals - is so small, and also so supportive.  They GET it like no one else does.  Losing my research peeps was a loss.  They reassured me that they are ALWAYS there for us, in anything we may need, ever (I sound like a Taylor Swift song at times, with all my always, nevers, and never evers) and I believe them.  THAT is the beauty of our Fragile X community - you are a call, keystroke or text away from people who are there to help you, both friends and professionals.

The National Fragile X Foundation is releasing a series of videos called "Forward Thinking."And yep, I have my 'own' video coming out in February (fame whore), but please, please check out this compilation video, which includes myself and many of the great friends I have made along the way.

It reflects the closeness of our community, our commitment to progress, and our positive thinking.

From the NFXF - "Forward Thinking is a video series of interviews with parents and others that we conducted at last summer's International Fragile X Conference. Members of the Fragile X community all over the world have found them deeply moving and inspirational, so we are pleased to present to you our 2013 video series with this compilation of the faces and voices you will see and hear as the year progresses."   






I hope all my friends and readers had a fantastic holiday season, and I have made the 'resolution' to myself to WRITE MORE.  Recommit to myself, my blog and my writing.  So I promise to check in more, update more, and BE HERE MORE in 2013.  Life is good, kids are good, and I am good.  All I need is to read last year's January blog to appreciate how far I have come and how much my life has improved.

Last year I printed out this quote, hung it on my bedroom mirror, and held desperately to it....
"She stood in the storm, and when the wind did not blow her way, she adjusted her sails." 
(Elizabeth Edwards)

This year my dear OLD friend Earle Collins quoted to me 'There are years that ask questions, and years that answer them." 
(Zora Neale Hurston, from "Their eyes were watching God")

I've adjusted my sails, and this year, I'm looking for answers.
Thanks for staying tuned and bearing with me, folks.  I'll see you around the blogosphere.  xoxoxo

Shawna Shenette Photography


Monday, December 17, 2012

Searching for Meaning, Where There is None.

Why.  The question everyone wants answered is "Why did this happen? HOW did this happen?"  We all want someone or something to blame - we want answers. As humans, we crave answers to make us feel safe in our world.  Somehow, if we can understand something, we feel like we can also prevent it.  Do we need stricter gun control? Should we arm our teachers? Is this a failure on the part of the mental health system? Or parents? Is it the media for sensationalizing violence while also densensitizing us to it? WHO is to blame? We need to point fingers.  We need explanations.  We need understanding.

Through it all, I have understood.  I have understood that I will never understand.  As a therapist who specializes in the areas of grief, trauma and abuse, I learned a long time ago that evil exists.  Evil exists inside people, people who you know, people who you see everyday, people who are related to you and are supposed to love you and care for you.  I have looked into the faces of innocent children, and seen in their eyes the harm of evil.  I have met face to face with abusers and pedophiles.

I have held my clients as they wept in my arms.  A 5 year old, raped by a gun, by people her drug abusing parents allowed in the house.  A teenager, raped by a friend.  An adult, raped for years by her father, and sacrificing herself to protect her younger sister.  I have heard stories of children being sexually abused and raped by their own parents.  Being prostituted,  being 'shared' by their parents' friends.  Stories of clients being raped while hearing their siblings raped in other rooms in the house at the same time.  Stories of physical abuse, emotional abuse....I used to specialize in sexual abuse of preschoolers.  Tiny little children used in sex games by their day care providers.  They would draw pictures of their abusers in cages, in rocket ships, and we would send them to the moon, and rip up the pictures of them.  Recently a man in Wakefield Massachusetts was charged on a hundred counts of sexual assault and rape.  A hundred.  One of the many, an 8 day old baby, raped.  Yes, I have seen evil.  I know evil.  It is part of my job, every day.

So I thought I would be prepared to walk into my daughter's school today for my weekly library duty.  My library class is a 2nd grade, not my daughter's class, but a class filled with her friends who I have known since kindergarten.  They were running late and I walked down the hall to check on them - had they forgotten me? Was there a change in schedule? It's pajama day, and all the kids and teachers were in their 'jamas.  The teacher was reading a chapter book to the kids, and said "Thanks for checking in  on us! We will be right there!"  I walked back to the library to wait for them, and was holding back tears, which is surprising for  a stone-cold-Irish-bitch like myself.  The hallways echoed with the sound of children's voices and laughter, kids in the cafeteria eating, my own daughter in her gym class.  I saw teachers walk by each other and touch - a shoulder, a hand - I saw my daughter's teacher give a quick pat to the school secretary as she walked by.  The kids were the same, but I could see it in the teachers.  I held back my tears.

After my class left the library, and I was re-shelving books, I thought 'What would I do? What if I was here and that happened? Would I run to my daughter? Stay put? What if we then both died and left my son without either of us?'  I think of the beautiful 27 year old teacher, Victoria Soto - and I have thought of her often - cramming her kids into cabinets and closets - and I think of my daughter's class - they don't have cabinets or closets.  That beautiful young girl - thinking of her students, putting them first - having the wherewithal in a crisis to hide her kids and then lie and say they were in gym, only to be gunned down.  Sacrificed herself for her sweet students.  What would I do?

I left the school, signing out, saying good bye to the principal and the secretary, who runs the school with an iron fist.  Just last week she had yelled at me for not stopping in the office when I went to the nurse's office to grab my (faking) sick kid.  I'll be back on Thursday, helping my daughter's class decorate their gingerbread houses.  I'll be in her classroom.  What would I do......

I've seen the face of evil.  I've seen the aftermath of evil, everyday.  I thought I was hardened, I thought that 'knowing' there are no answers, no easy answers, would somehow protect me.  But walking through the elementary school today, grades K-5....I cracked.

It's Monday, and the ground is covered in ice.  The blades of grass, branches of trees, walkways and stairs - all coated in a thin sheet of ice.  2 hour delay for students, and then the buses came, and took the children to school, driving carefully through the icy streets.

I have been thinking of the movie "Natural Born Killers" often this weekend - actually a favorite movie of mine.  A serial killing couple become revered in our country, a statement of how the media sensationalizes violence. Thinking about 'Grand Theft Auto' video game, where you earn extra points by killing the prostitute. Thinking about my 7 year old neighbor, who spent Halloween watching rated R horror movies. Thinking about my own son, so prone to aggression since September, his main target being his loving sister.  What would I do......

As much as we all want to feel safe in our homes, our schools, and our families, we need to acknowledge that there are no easy answers and there are no quick fixes.  "God wasn't there, 'he' didn't prevent it" or the reverse  "Everything happens for a reason, God has a plan."  I don't buy either of those.

All I know is that there is something very, very wrong in our country.  I'm just not sure what it is.

Photo, as always, by Shawna Shenette Photography



Friday, November 2, 2012

Love and Marriage

Included in this months Bay State Parent Magazine is an article by yours truly entitled "Marriage: A Casualty of Living with Special Needs - OR NOT?"  It includes statistics, resources, and interviews with the fabulous Hamburger and Jackson families, both of whom are local families and ones I consider friends.  I also briefly cover 'my own story' -   it's a family magazine people, gotta keep it 'Rated G'.  And to also respect the privacy of 'others' (cough cough).

Click on the link here http://issuu.com/baystateparent/docs/1112bsp to read.  You must flip through the on-line magazine to get to it, it is on page 30!!!

Included is a family photo (the same as the one on my blog) by the always phenomenal, patient and talented photographer Shawna Shenette.  She is a freakin miracle worker.  Owen was a NIGHTMARE during the shoot (really, I just scheduled it for Christmas cards and it bizarrely coincided with my editor's request for that article - she REQUESTED I write it, let me add, I didn't volunteer that topic!).  He was crying, kicking, resisting - a total nightmare - and yet somehow he (sorta, barely) calmed down and of course Shawna got SEVERAL phenomenal shots! An hour after the shoot, we were out to dinner with his godparents, and Auntie Jenny pointed out he didn't look too hot - he was BURNING UP with fever! Within 48 hours he had been diagnosed with strep.  NO WONDER he was such misery! So in that picture that is included - is my little boy burning up with fever, yet still smiling.  Love him.  And of course, my always outgoing and dramatic B- when I told her we would have another picture in BayState Parent she replied, "AGAIN?"  Oh yes B, big sigh, fame, don't give me your false protestations! She's quite the little character.

And let me add I just love this photo of me and the kids - summarizes us perfectly - B's flair for the dramatic, Owen snuggling into me, me kissing him, and my arms wrapped protectively around both.  My munchkins, my blessings, my everything.