A Reality Check with Bret Michaels: Every Rose Has It’s Thorn

Last Saturday night Rick and I had the honor of attending the JDRF Rock the Cure Promise Ball.  It was a fancy affair, and I enjoyed the opportunity to peel off the yoga pants and sport an actual gown. And see Rick in an tux.  Yes. He is hawt.

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Our new digs also inspired a lot of Rock the Cure group selfies and fun pictures with friends….

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Photos above provided by Stefanie Marco, KINDSPIN DESIGN

 

As you can see, I had to practice the poses, as I had to impress Bret.   He and are are true besties now.  Rock on!

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*Photo Provided by JDRF

We went to Rock the Cure in honor of some of our favorite people in Connecticut.  The Christensen family and the Poulin family bonded last year at the  humid indoor pool, where Jessica and I spent several hours a week on the butt-numbing bleachers while our older kids were at swim team practice.  We both have little ones who sat with us… her son Jack, and my little Stella.

 

I remember the day Jess told me she was worried about Jack, who was suddenly mad-dog thirsty and peeing every ten minutes.  It was totally justified worry, it turns out, as Jack ended up in the ER the next day, Valentines Day 2013.  He was diagnosed with Type 1 Diabetes (T1D) and the Christensen’s life course was radically altered.

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Type 1 diabetes is an autoimmune disorder that attacks the pancreas, and halts the ability to produce insulin, the hormone that metabolizes fat and sugar in the body.  T1D is a life threatening disease.

 

Suddenly, Scott and Jessica, Jack’s parents, were thrust into the unwelcome role of acting as their son’s pancreas.  This includes regular finger pricks to test the blood, adjusting glucose levels by giving shots of insulin or consuming more sugar.  They had to become experts in nursing, nutrition, endocrinology, and Worry.  And through the past year, they have launched themselves into actively doing all they can to help find a cure for their little boy.

 

The Promise Ball was an incredible night.  It was conference center full of men and women whose lives have been touched with T1D, and peppered with beautiful children. Many of them had ports taped to their arms, a badge of their courage and vulnerability.  There was a palpable spirit of camaraderie and generosity that I have never witnessed at this magnitude, and it was deeply moving to be a part of it.

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Photo Credit:  Stefanie Marco, KINDSPIN DESIGN

 

After listening to various experts share the advances being made in the research, Bret Michaels spoke about his own challenges living with T1D since he was a six year old boy.  We got our  80’s rock on with Bret as he performed for us, including Poison’s legendary  “Every Rose Has It’s Thorn.”

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Photo Credit: Stefanie Marco, KINDSPIN DESIGN

 

 

Later, our friends got up in the spotlight to share their story.

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As they spoke, I remembered a conversation we had last summer, about six months after Jack was diagnosed.  We were sitting around their fire pit chatting after a delicious meal. Despite the darkening summer night, our kids giggling in the yard, and good company,  I was feeling heavy.  Filled with a dark, syrupy worry that stuck to my insides and made it hard to match the lightness of the evening.

 

Every rose has it’s thorn.

 

We all have our sharp, thorny parts, the pricks that will make us bleed, along with the beauty.  And that night, I felt overwhelmed by my thorns.  Misophonia had been escalating in our house to sanity threatening levels,  (which you can read more about here and here).   I was lost in my own sorrows.

We began talking about misophonia and T1D with Scott and Jess. I had sought comfort by expressing how everyone has painful challenges.  Everyone has the hills they must climb to bring their children to safety and health and sanity.  Theirs was T1D.  Ours, misophonia…. drawing comparison to our mutual struggles as parents.

 

I remember the look on their faces in the firelight.  They kept quiet.

 

I had been so, so wrong.

 

Watching them bravely presenting themselves on the stage for JDRF, outlining their heartache and their hope last saturday, their love and passion for their son was powerful.

They presented this amazing short video, highlighting their journey:

 

 

WIth the birth of each baby, I went through a phase of  utter exhaustion that made my body feel as if it became one with any solid surface if I remained still for a few moments.  Despite the numbing fatigue, I felt the overwhelming compulsion to  watch my baby sleep, driven by fear that the length of time I closed my eyes would directly correlated to the length of time my baby’s breathing would cease.

 

Thank God that passes.

 

But for Scott and Jessica, it has begun again, in one eternal phase.  The fear is real… the fear that one night while they sleep, Jack will slip away from them.

 

This is their new normal.

 

There is the scary day parents face… when we must leave our child in the care of another,  trusting someone else to love and protect our baby… It is a painful loss of control for any parent.

 

But for Scott and Jess, they must ask his teacher not just to educate their son, but to be Jack’s pancreas too.

 

And did you know that blood sugar is affected by all kinds of things… not just the food you eat?

 

Swimming lessons, a family hike, a hot summer day, a fever, a bout of the stomach bug, a stressful day at school….   these normal, everyday occurrences can tip Jack into unstable territory for hours…. they teeter on the razor edge of worry, phone at the ready to call 911 as they watch him sleep and wait for his numbers to improve.

 

It is true, every rose has it’s thorn.  But not all provide a prick that can take your child’s life.

 

I thought about that night around the fire, and how I wasn’t able to see this family clearly.  I was bound in my own despair.

 

I had been blind to the realities of their crisis.

 

At the JDRF event, I was awash with gratitude for my own challenges.  I have not been required to become a vital organ for my child.  I am not living with the real and present danger that T1D presents for Jack.

 

The night provided Rick and I  with the conviction to stretch and do what we can to help JDRF find a cure.  As a recognition of my gratitude.  As an acknowledgement of their struggle. As a path around our own wounds and a means to feel empowered by sharing what we do have rather than focus on what we may lack.

 

If you can, please spread the word.  And donate here… even a small amount makes a difference.

It may soften the thorns you carry, too.

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Photo credit:  Stefanie Marco, KINDSPIN DESIGN

 

The Sounds of Our Crisis: Living with Misophonia

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Everyone has a trigger… that one thing that will make you go apeshit.  The emotion you just can’t cope with.  The monster you were sent to slay.

Mine is feeling silenced, my voice stolen.  Muted. Dismissed.

So naturally, I have  a child that hates the sound of my voice.  She suffers from misophonia, which makes her go crazy if I talk in the car while she is in the back seat.  She can’t stand to hear me talk on the phone, or converse with Rick downstairs on the couch while she tries to fall asleep.

Is that irony?  Divine cruelty?  God’s stab at satire?

Maybe.  But it also gives me clear direction…it demands that I find a way.   I have a little corner here, my own piece of the internet, and all I can do is write about what is happening with honesty.

I’m scared.  Driving home with my girls squabbling in the car, the fear creeps in.  It makes me angry and I am yelling at them before we have hit the driveway.  We have been together for 4 minutes.

We are emptying the dishwasher, setting the table for dinner.  Lydia stomps down the stairs, on the defensive.  She is singing loudly, slamming things to the ground, shoving chairs into the table, she crashes through the kitchen… the fear grabs me by the throat, and I struggle to maintain calm.

Lydia hisses at Carly as we sit in our chairs, and jumps to her feet quickly, almost knocking over the chair, slopping water out of the glasses.  About five months ago, Carly was added to the growing list of things that provoke Lydia’s misophonia meltdowns.  I take in a few gulps, the panic I feel tightens every muscle in my neck, strangling me.  She grabs her plate and kicks the swinging door in, stomping.  She grits her teeth but it doesn’t muffle the  furious screech.  We all freeze in place.   I put my hand on Carly’s back, and the small gesture of compassion breaks her composure.  She whimpers, and then grunts angrily.  Rick hands me Lydia’s  fork and napkin.  I snatch them from him and storm into the kitchen.   I try not to throw them at her.   She is cowering in the corner,  plugging her headphones into her iPod, turning it up so loud I can hear Bruno Mars damaging her eardrums.  She looks at me with disgust.

It hurts.  I can’t help it.  I feel wounded by her posturing.  Her revulsion.  Her aversion.  It’s an old wound now, scarred over and reopened by her sharp looks and high-pitched screeches over the last 18 months.  It’’s raw right now.  Because she is triggered by Carly too.  And every time she hurts my adult feelings, every time I must reach deep into the best, most mature part of myself to process this hurt and turn it into much-needed compassion for my glowering daughter, I think of Carly.  Her inability to process.  Her young spirit, and what this rejection must be teaching her about herself.  The complexity of the emotions swirling around our dinner table is nauseating.

I retreat to the dining room, and we eat, minus one.  While we eat, I struggle to pull my mind out of the next 10 years.  How will we survive this?  What will this do to us?  What will happen to my little girls?  To me?  I look at Rick, my eyes communicating my desperation.  He tries to ground me into the moment.  “Take a bite.  It’s just dinner,”  his eyes say, pleading.

It doesn’t feel like just dinner, it feels like our whole lives are being swallowed by this crazy, mysterious misophonia.

Sometimes, I can not keep the monstrous fear at bay and  I lose it.  Most of the time, it looks like anger.  I rant. I watch Stella’s eyes widen as she hears, “I’m so damn sick of this shitty behavior!”   The words taste terrible as I spit them out, aware of their sharp edges.     This extra loss of control  must do wonders for all three of my girls’  already tender, aching spirits.  Their appetites.   Being angry with Lydia is like being angry when a wounded animal snarls at you.  She is hurting, I know this.

Sometimes, the tears just roll, drip into chicken orzo pasta, and everyone acts like they don’t notice.

Sometimes, we pretend it isn’t happening.  We spend the meal sharing things we are grateful for in a clockwise, orderly fashion.  Stella gets up, runs to the kitchen, and makes Lydia lift her headphones and give her grateful words so she can report to the group.  The grateful list is building up, the room tightening with tension.

After dinner, when the clicking of the silverware against the plates stops, when the sight of Carly chewing her dinner is gone, when the sound of me taking a sip of water is over, Lydia goes into sweetheart mode.  She is throbbing with guilt and shame, she is not oblivious to the pain she is causing.  She snuggles up to me, she brings me school papers with great marks, she sweetly engages with Stella, offering to help her get her pj’s on. She tries to make Carly laugh.   She leaves us love notes, to smooth out the hurts.

I often find Carly sulking in bed.  The rejection is getting to Carly.  Normally so passive, so unexpressed, so quiet and easily content, Carly is beginning to show her pain.  She is frustrated and pissed off, she cries in an angry fit, kicking at my attempts to hold her.

“She HATES me!  She thinks I am disgusting!  And I am not doing ANYTHING!”

She folds her arms defensively, growling at me.  I try to explain.  But the explaining doesn’t soothe.  I know that, as I ache too.  I feel rejected.  I feel terror about how Lydia’s life will unfold, how she will manage.  I feel the weight of the damage she is doing to her sister, unintentional, but real, slam me in the chest.

Oh my GOD, what are we going to do?

It is not breaking my heart…it is eating me alive.

I think about all the families out there, trying to hold on.  Carrying their own burdens.  Their own hurts.  I am grateful for the health we do have.  That my girls are doing well in school.  They enjoy sports and friends and music and movies.  I think of people I know.  People I know who have children with closed  head injuries.  Autism.  Feeding tubes.  Wheelchairs.  Brain damage.  Schizophrenia.  People I know who have to liquefy their child’s meals and feed him through a straw.  Or are acting like their son’s pancreas, spending sleepless nights on his bedroom floor, praying the numbers go up, one hand ready to summon an ambulance.

These thoughts do calm me.  I do feel genuinely grateful.  I feel relief that it is not me.  And then I cross my fingers, knock on wood, send up a half-hearted prayer.

And please bless that will never be me.

But it does not drain me of my fear.  It does not help me feel capable of handling my own life.  My own daughters.  My own burdens.

I used to have a recurring dream, showing up when I was a small child.  It has haunted me for most of my life.  In the dream,  I am going about a normal day, when I notice that a tooth is loose.  And when I wiggle it, the tooth pops out in my hand.  Horror fills me as I realize that the tooth has come out.  My permanent tooth!  I tell someone… whoever is with me in the dream.  They seem unconcerned.   I dial the dentist’s office.  And while I scramble to tell people what is happening, or make an emergency appointment, my teeth become loose and fall out, one by one.   I feel completely out of control.  Helpless and panicked.  Permanent damage is being done, and there is no reaction, I can’t stop it, I can’t find someone who can stop it.

I haven’t had that dream for many years.  Maybe because I have climbed inside of that nightmare.   I am living in it now.  That feeling of helplessness and desperation.   We are living with something no one has heard of.  There is little known about it.  Our doctors haven’t heard of it.  Psychologists.  Therapists.  The few that know it, can not agree on what it is.  A psychiatric disorder?  A neurological disorder? A hearing problem?  A sensory integration disorder?  An autism spectrum-symptom?  A behavior problem?  The sensation of absolute helplessness is paralyzing.  I have no control.  I have no where to turn.

Why I am writing this?  This private, personal account of what really happens at our house, around the dinner table?

During the summer of 2012, misophonia had already slithered its way into our lives.  It’s presence a snake, coiled and waiting.  Watching us.  I had a sense it was there, but only that unease that comes as a premonition before the strike.   When it struck, here, and here,  I did what most sane, reasonable parents do.  I turned to the internet.  And there, I found almost nothing.  The info that I did find was less than encouraging.  It still haunts me, the things that I read that summer.  About families that can not live together.  About kids who leave home and never come back.  About mothers or fathers or siblings that are lost to each other, unable to overcome these tiny, imperceptible, everyday noises that scratch at Lydia’s brain like nails on a chalkboard.

There was a blog, I wish I could remember the name of it.  One blog.  And the mom who wrote it, posted about her son, and his misophonia.  All of the things they had tried.  All of the medication, and therapies and specialists that were not helping.  About dinner time.  But what left the lasting  impression was one sentence.

“We are in crisis over here.”

It was the most comforting thing I have read about misophonia.   I think of her often, and her willingness to admit it.  The crisis.  “Me too,”  I thought.

Knowing I was not alone was everything.

We are trying things.  We are draining our energy, our time, our savings account, trying to find help.  On the outside, we look like a normal, everyday family of five.  Mini van, soccer cleats, playdates, preschool art projects, birthday parties, piano recitals.  On the inside, if you came to visit, you would see a functioning family.  Home cooked meals, sibling squabbles, love notes, piles of laundry, homework unpacked on the coffee table.

Maybe we are a normal everyday family of five.

And everyone has something that makes them feel out of control.  Helpless.  Terrified.  Alone.

Are we all there?  Walking around with our teeth falling into our palms?  Clinging to the stories of the other people?   Gathering gratitude like seashells in a bucket, talismans of the burdens that we don’t have to carry?

The one thing I can do is step forward.  Use my voice, and say it when I can.

Me, too.   Me too.

To learn more about misophonia:

This NY Times article

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The today show segment, here   Warning:  trigger sounds are played.

My On-Screen Life

“The significance is hiding in the insignificant. Appreciate everything.”
― Eckhart Tolle

I got up early today to walk with a friend.  The morning was dark and quiet, the street lamps perfectly illuminated the fire-red and orange trees. The houses that lined our lovely gridded streets were still dark and sleepy, the porch lights illuminating the pumpkins and mums.  The grand white colonials with black shutters and red doors stood at attention, the Tudors took on a storybook quality.  It was picturesque, straight out of a movie set.

I may be a freak, because sometimes, in moments like this, I feel that I am walking in my own movie…a sort of out-of-body experience, where I observe myself and how sublimely orchestrated and beautiful the world is.

I love those moments.

Does this happen to anyone else?  The moment where you are walking down a tree-lined street, or sharing a bottle of wine with a friend, or your husband reaches to lace his fingers in yours and laughs in such a way that your mind starts searching for the sound track to go with the scene…like every detail is thoughtfully orchestrated to convey this moment.  Everything slows down, and you feel yourself softening into a timeless breath that will carry you through the day?

The leaves were crunching just so under my shoes.  Leaves fluttered softly to the sidewalk from the molting trees, gold and crimson confetti that made the quiet daybreak feel like an occasion.  There was a posse of adorable elderly ladies in their walking gear, zipping down the sidewalk.  We ran into them on our zigzagging Continue reading

Gratitude, the Collective Cup

“Invisible threads are the strongest ties.”

― Friedrich Nietzsche

I can not stop watching this video.  I found it on Brene Brown’s blog, where I was seeking solace from a very difficult morning…needing a bit of inspiration and a lift in spirit.

I needed to find a place of gratitude to reset myself.

What an instant spirit boost… it worked after the first view, but I like to be extreme about everything, so I have, of course, watched it about ten times.  Ok  fifteen.   Well, maybe more like twenty.  

What an amazing experience for these kids.  I love the amazing feeling of community and interconnectedness that washes over me just watching the video.

There is something transformative about participating in something so collective and beautiful.  It is a reminder of our unity and wholeness, Continue reading

Gratitude: the Back Float

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Wow.  Have you ever had one of those weeks (or two or three or forty in a row) where all of those cliché sayings like, “When it rains, it pours…” and “The shit’s hitting the fan” and “That which does not kill you makes you stronger” are appropriately running through your head?

Not the truly devastating stuff… not the real monsters like a death in the family, or a life threatening emergency or the end of a marriage.  But mid-level crap and madness that are stress inducing and eat away hours of your sleep.  The junk that makes you alternately lose your appetite and then eat a whole pizza at midnight like you are a 19-year-old college kid?

Stuff like that, peppered with ridiculous moments that seem to add insult to injury…since your brain is occupied with the mid-level madness, you don’t realize you are pointing the non-stick spray at your face and not the hot pan while making your kids’ breakfast (yes.  It happened.)  Or you begin dropping things constantly and repeatedly (never the car keys, always the iPhone).  Then you bend over six times in a row before successfully picking it up, making you look like you are doing some ridiculous dance in the cross walk of Target while everyone waits for you.

The moments that kick up that stress level until soon, every word you utter brings tears to your eyes?

Well, that sums up my last few weeks.  A stressful event happens, I freak out, I deal with it, I wake up the next day having talked myself down through a night of sleepless agonizing.  I begin my day feeling much more stable and ready to carry on…and then something else happens.  And slowly, I begin to unravel.   I will try to get some advice from a friend about the day’s non-emergent, mid-level flavor of the day crisis and suddenly I am desperately wiping away insistent tears on the kids’ playground at school.  It seems like a terrible over-reaction to the issue at hand…but  the culmination of it all at once that threatens to take me down.

Having these experiences has seriously challenged my ability to write a Gratitude post.  Something I committed to doing weekly and have been failing to meet the mark.  I am drowning here, people. Continue reading

Sound Gratitude

“We can only be said to be alive in those moments when our hearts are conscious of our treasures.”
― Thornton Wilder

It’s August.

Late August.

 Which means that we have made it one year here in Connecticut.  The thick humid air, charming old houses, light summer nights ripe with singing wildlife, it has me feeling unanchored in time.  The trauma we went through last year is blinking back at me in blimps and flashes… like post traumatic stress disorder.

We moved.  People do.  But during this time, our daughter Lydia, always a child who struggled with sensory sensitivity, burst into a new and life altering mania.  She hated sounds.  Specific sounds, like chewing and swallowing, and sounds of speech, especially S, T, K, P and C.

She hated these sounds, when they were made by me.

 Her mother.

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 This suddenly made every day life a harrowing ordeal filled with angry tantrums and sudden outbursts of rage.  I could barely communicate a simple “it’s time for dinner” without her falling to the floor screaming.  She flinched, grimaced, covered her ears, kicked her feet, jumped away defensively like she had been burned.  She would stomp around loudly and hum, crash things together, sing obnoxiously loud, anything to drown out my sounds.

 

Lydia has Misophonia.

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Desperate, we turned to the internet for help, and the things we read about Misophonia devastated me.  Completely eviscerated me.  The scarcity of good information and the personal accounts were awful.  Stories of families that can no longer live together, or live in the same household but in isolation from one another.

  “My little girl is ill.  Our lives will never be the same” played in my head, a vicious mantra.  No one I talked to about what was happening  would validate my devastation. In well-meaning ways they suggested  it was simply a discipline problem, perfectly normal considering the transitions the move had forced upon my daughter.

That wasn’t it.

Car rides were a nightmare.  Meal times were a nightmare.

And bedtime made me ache.  Even now, the sight of her summer pj’s has me reliving some of those nights with painful sharpness.

 Just a few weeks into our move, I went in to get the girls to sleep for the night.  I decided to just breeze through it, act nonchalant…not expect a battle.  Be positive.  I took some cleansing breaths, trying to wash away the day’s earlier traumas.

I entered with a smile…and the moment I said “hop into bed and I will read you a story” Lydia screamed and cowered on the bed, kicking her feet angrily in my direction.

Palpable disgust radiated from her expression.

When I turned wordlessly to walk away, not knowing how to bear it, she crawled to the end of the bed and hung on my waist, sobbing.  She begged me to stay, and I could feel how rejected she felt as thickly as her disgust, two emotions that I simply did not have the tools to carry together.  I smoothed her hair and wiped the  tears off my face with my sleeve.

I tucked Carly in first, she complied despite the fear I saw in her blue eyes.  I did not dare whisper, so I signed “I love you” and touched my lips with my fingertips, and then hers.  I tucked Lydia in next, and repeated the sign language.

This silent communication  was not a comfort to me but a physical act that seemed to be shredding our futures together.

 I turned away and she grabbed my hand.  She whispered “Im so sorry mommy.”  She tugged me closer.  I climbed into bed with her, pulling her against me, I held her tightly, buried my face in her freshly washed hair, and wept silently until she slept.

*****

Today, my girls are in Vermont with my in-laws once again.  They are enjoying all the brilliant fun of summer at Grandmama and Grandpapa’s  house…the pool, learning flips on the trampoline (gasp) and eating icecream at the fair.

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 And I am here, with Rick in Connecticut, swimming in memories.

 

But, with the PTSD flashbacks comes gratitude, washing over me in great waves.

 

1.  By the time we settled into our new home in Connecticut, my inability to communicate with Lydia had reached a crisis stage.  Rick and I would pour over internet information at night, searching for a tiny glimmer of hope.  We found a post on a message board.  A woman and her son, in Australia, claiming they had found success with a very specific type of neurofeedback therapy.  She cautioned that it must be this specific form of biofeedback, as she had tried many others that had failed to work.  One positive story, one mother who had not been forced to live in silence or away from her child.

Gratitude.

2. We had just moved to a small town, in a small state.  What are the odds we would be able to locate a therapist that performed this type of specific neurofeedback for our child?  I was skeptical.  And we found Inner Act, run by Rae Tattenbaum, a woman who specialized in this neurofeedback.  Her office is less than two miles from our home.

Gratitude.

3. For the first 5 months, I brought Lydia three times a week.  The minute we opened her office door and Rae would inquire about our day, I would crack open, and weep.  Every time.   But it started working.  I was able to kiss Lydia goodnight.  Ask her about homework.  Take her to buy soccer cleats.  Eat (sometimes) together.  We pared it down to twice a week, and eventually, once a week.  Rae saved us.

Gratitude.

4. Lydia has not had regular therapy from Rae since early June.  When summer came, our schedule went.  We’ve been traveling, visiting family, going to summer camps and beaches.  I had hoped the progress we had made was permanent.

It was not.

Lydia is now showing signs of sensitivity towards her sister, Carly as well.   We have not eaten a meal as a family, in the same room, for well over a month.

But I know there is hope.  To get her back to a place where we can manage.  We can be a family.  I will not lose my daughter.  We will find a way to maintain our bond.  There is hope.

Gratitude.

 

5. A few days ago I found out that the young neighbor who used to babysit for us in Colorado has been diagnosed with misophonia.  I called her mom…

Oh, the cathartic nature of a talk with someone who truly understands.  I can not express my gratitude to Lori enough.  She also shared with us that she has found a new therapy… hearing aids that help decrease the sound sensitivity.  Her daughter has found immense relief.   I can’t wait for tomorrow, to seek them out.

 And then maybe,  I can have dinner with my baby.

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Gratitude.

Gratitude bites

Change is the very basis of our life, not to be fought, to be welcomed and tasted, to be seen for the gift it truly is.
~ Brenda Shoshanna

Well.  It’s sunday.  I have just returned from a glorious trip to my beloved Colorado.   People, Colorado is heaven.  There are no words, for the beauty, the glory, the loveliness of my home state.  The air…it is so dry, light.  As in not wet.  The horizon, it is so open and full and distant and colorful.  Not a green tunnel.  The houses, they were so large and spacious, the plumbing, the roof tops, so… vivacious.

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Yesterday, we flew as a family of five, a family containing a three-year old person (God Bless Us All) from my glorious Colorado after a long visit,  to our home in Connecticut.  I proceeded to apply every ounce of any people pleasing, energy-sapping, procrastinating, doubting, lonely and fearful energy to the road ahead, as we bounced down the runway.  We arrived home, and instead of breathing in our home, taking in the charm, the soft light, the artistic nuances, the brilliant color, the fresh familiarity and promise… I picked a fight with Rick, pouring every particle of fear and heaviness that the months ahead will hold for us into making him feel inadequate, making our home look rundown, making my spirit feel small.

Not good.

It is now that gratitude is necessary. In the moments when gratitude bites, and everything feels impossibly fickle.

A year ago, we moved here.  That word, moving, does not capture what we went through. Or maybe it does.  Move.  Ing.  Movement.  Motility.  Mobility.  I know that many, many people in the world experience this excruciating transforming, called moving.  From the old, to the new. The fossilized, to the green.  The roots were dug up, and we found ourselves in pain.  To be dug up is painful.   It was an acknowledging, that our lives needed new movement, as much as we resisted that change.

We arrived here in the northeast a year ago.  I found myself facing monsters, unearthed from a vault I was no longer able to keep locked.  The August air here was as thick as my fear.  My daughter became ill with a bewildering affliction.  The cracks we had spackled over and repainted in our marriage became fissures threatening to render us in two.  The acknowledgment of my powerlessness was paralyzing, the idea that I was not strong enough, capable enough to withstand a “silly move” across the country filled my body with cement.  I found myself facing a spiritual crisis larger than I had ever known.

I fantasized about walking out of my life.

I found myself weeping into a cardboard box, with a new and passionately destructive mantra:

This is not my life. This is not my life.  This is not my life.

I shocked myself with the depth of my misery, my weakness.  When you choose to move, change, transform something in your life, every problem that has not been addressed, every injury, every insecurity…it will rise to the surface, reveal itself to you for acknowledgement, for repair.  And it did.  Viciously, and without pause.

Apparently, I had been standing on a volcano of suppression, and it erupted at our taunting…our invitation, by moving our family to Connecticut.  I am still in the process of digging out.  We hit our one year move-iversary and while things seem more familiar here in Connecticut, the repeat seasons, the fact we have spent an August here before… the humidity, the rainstorms, the unpacking of suitcases, it floods back to me in giant waves of panic.  Like post traumatic stress disorder.  My scalp has been itchy as the memories barrage me (did I mention that we all got lice during our move?)  A certain sight or smell or taste will trigger a powerful rush of memory of my misery just a year ago.  The site of the weeds in the yard, growing taller than me.  The organizational nightmare of our garage, still housing trashed cardboard boxes. Or the smell of wood smoke wafting from the eighty-four year old chimney after a rainstorm. I am randomly overcome with the remembering of my absolute undoing.

Two days ago, at my parent’s home, we had a dinner with the people closest to us in Colorado. We ate and drank and reminisced and took pictures. The kids made messes in the dress up box and turned dinner into a combined game of duck duck goose and musical chairs.  Periodically an adult would snag a child and trap them in a hug without their permission and the impending close to our visit would loom larger.  And then we said our goodbyes.  Again.

I wiped the tears of my children  with the palms of my hands, I buried their heartbroken sobs into my belly and rubbed their backs and soaked in their sadness.  I kissed my nieces and nephews and hugged my brothers and sisters just as we had last year, on the front lawn of my parent’s house.

Yesterday, we hugged Grandma and Grandpa in the early morning chaos of the airport and flew back again, to the place where the moving must happen.  It is happening now, as I write this, with a lump in my throat.

As we made our final descent  yesterday, I held Stella’s dimpled three-year old hand in mine and felt the airplane speed up to meet the fast approaching ground, and then slow…speed up in a burst, then slow again.  It felt choppy and unpredictable as we dipped lower toward the ground.  I was afraid we would land too hard, the inconsistency would prove to be a danger to our arrival.  Despite the unsteady approach, the ground seemed to rise up to meet us, and we eventually bounced to a roll, roared to a lull, and found ourselves safely…Home.

There has been changes, monumental, and minuscule, in our movement from one place to the next.  But mostly, the change is in the mantra, which has been unearthed from the rubble so far.

This is my life.  This is my life.  This is my life.

And the universe will rise up to support me.

Today I am grateful for:

-a family worth missing

-the softness of Stella’s hand

-the healing properties of spackle

-the reassuring step from the threshold of an airplane on to solid ground

-movement