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

Gratitude Sunday

“When you are grateful, fear disappears and abundance appears.” — Tony Robbins

I am heading into my last week of vacation with friends and family in Colorado, and so I am a bit behind with my posting…but I made this gratitude pledge last week and I am sticking to it!  True confessions, I haven’t done it with my kids this week, but I tend to give myself a lot of leeway on vacation.  On vacation, the kids can pick whatever cold cereal they want in the cereal isle, eat ice cream for dinner at least once, go to bed too late, and eat out of grandma’s red licorice drawer.  So, the daily gratitude has not been introduced, they are too tired and hopped up on sugar to think straight.  (Me too…Ahem).

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We are spending the day with this lovely couple, our besties, Shannon and Dean.  We took this picture a year ago on their anniversary, where they threw us a goodbye party at the park.  Today we are helping them celebrate their little girl’s 4th birthday.  Finding good friends is like dating… some friendships are short and intense, some come and go, wane over time, or grow apart.  And some friends are for life, till death do us part.  And today the knowing we have this kind of friendship fills me the gratitude.

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So, we’ve moved.  To the northeast.  And it was so, so hard.  If you are reading this blog, you will hear more about this.  After a year of being in Connecticut, the grief and overwhelming disorientation is waning a bit and I can see some of the beauty and fun that we will get to enjoy being in a new part of the country.  But one thing I miss is the amazing horizon and views.  Living in Connecticut is like being in a green tunnel.  You can’t even see the gas station when you exit the freeway.  I miss this gorgeous distant view of the mountains and surroundings.  The ability to see more than a few feet away.  And, let’s not overlook my sweet not-so-little girl, still game for a good snuggle and huge hug.

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A note one of my girls wrote Rick for Father’s day…I will insert myself into the message…a glowing endorsement of our parenting skills up to this point.  Gotta be grateful she has such a positive spin on her childhood so far!

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Not the greatest in pictorial skills…but are tantalizing pictures of licorice really necessary?  Actually, while I do like red vines, I rarely buy them unless I am missing my mom.  She loves it, and has a drawer full of it in her kitchen, on road trips and vacations she always has some to pass out, and she has no trouble throwing out half a bag to open a fresh one she has stored in the cupboard.  Delish.

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We did the Warrior Dash last year.  There is a huge mud pit you have to swim in under barbed wire, and I was pretty grossed out peeps.  I have all kinds of sensory issues.  The idea of having to touch a terra cotta pot makes my skin crawl, so submerging in mud…not my gig.  Thank goodness I have someone to push me out of my comfort zone, because it ROCKED.  The whole experience was so fun, Rick is trying to convince me to do the Tough Mudder next.  But, live electrical wires are part of that experience…and I don’t know that I am ready for defibrillation while fully conscious.  When I feel like getting fried, I will be sure to let you all know.

That’s my five gratitude highlights this week!  What are you grateful for?

Clawing Out of the Hole

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There have been a few different times in my life where I have found myself at the bottom of a deep, dark hole.   A few of those dark times in my past, I have jumped on that “grateful journal” bandwagon in desperation to hoist myself out of the pit of despair. And guess what?  That whole gratitude journal thing works.

The one downfall to this magical method is that when you are in that dark deep well, the last thing you want to do is plop down criss cross applesauce on the slimey, rank ground and start ticking off the blessings showering down on you.  We like to wallow, or scream for someone to come and save us. I have been exploring some of my life adventures, like moving across the country, and lice, and humidity and surgery…things that recently had me wallowing in deep misery.  While the idea of revisiting the gratitude journal popped into my depression-fogged brain once in a while, I would snicker at the very idea.  Sunny skies and puffy clouds and giggles could not pull me from the shit hole I wallowed in, not this time.   I resisted.  I was saturated by my misery, consumed…depressed.

What I do know…  gratitude is the life line.  It’s simple. So simple, it is easy to angrily crush the idea between two fingertips.   Wallowing in the muck is so much more…available.  But the thing is,  you can force yourself to start with just one tiny thing.  And pretty soon, more tiny things appear.  And then you will find yourself actively searching for those tiny things, until the collection of beautiful things becomes more consuming than the collection of miserable thoughts that keep your ass bound in the mire at the bottom of that hole.  If you use those beautiful things to stand on, the hole will become shallow enough to climb out into the sunshine.

I write 5 things a day.  They must be unique and they must be written.  And I will share five things on sundays here on my blog.  I am going to start this practice with my three children at home as well, and report how it goes to you all.  I want my children to actively participate in collecting beauty and finding gratitude in their every day moments.  Gratitude must be more than a concept I angrily throw at them when they whine on the way home from the movies.

This is a big commitment for me, because I live in a wasteland of chore charts and jars half filled with “reward marbles” and potty posters with just a few random stars stuck to it.  I am abysmal at creating and consistently implementing great parenting ideas such as this…but since the gratitude journal concept has brought me from the darkest places into the lightest moments, and because I believe gratitude is essential to bliss, I will do this.  Now.  With my children.  And, with you.

I invite you to join…do it yourself, in your own household, or just post a comment on sundays with one thing in your week you are grateful for, and see where it brings you!

For my inaugural Sunday of Gratitude, I will use pictures too.  (A dangerous precedent).

ImageAn obvious one.  I  have no idea how I managed to turn this dude from a pen pal in my mailbox into a man willing to take on…ME for eternity, but it happened, and there is nothing more incredible on the planet than that.

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So, do you all know about Azaleas?!?!??  I just lived my first spring in Connecticut, and you guys from other places, it was RIDICULOUS.   I practically drove my car into a mailbox every time we went anywhere.  No one in my family could finish a sentence without me gasping and pointing it out, in every yard.  Look!  Look! At the hot pink bush!  That coral color!  Oh LORD can you see that purple bush!? Sometimes, I would randomly have to pull over and take a picture, it was just too hard to zip on by.   I still can’t get over it.  Crazaaaay.

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So, the last time Rick and I went into NYC, we finally made our way to the MOMA.  Whoa.  It was inspiring, and sometimes, a bit confusing.  What is NOT confusing is my joy at seeing pantyhose being stapled to walls and filled with sand.  This is a picture captures how I feel about pantyhose… I would rather be nailed to a wall than wear it.  And, since I used to be mormon, I have done my share of suffering their sausage-like suffocation.  I am truly grateful that I no longer own a pair of these wretched things, and I don’t feel the need to subject my little girls to this torture either.  It is true freedom.

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When my oldest daughter was cleaning out her backpack, I found this in a stack of papers.  She had written it at school, not for an assignment, but just because she felt like it, she told me.  It is framed and hanging above her bed now.  I hope she eats these words for breakfast every day for the rest of her life.  I am grateful that right now, her 9 year old self is captured in crayon, in the most breathtaking way imaginable.

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This is a picture of a bookshop in NYC.  I fell in love with this ceiling, and I stare at this picture as my wallpaper every day.  I wish I could remember the name of the shop.  But when I see these books, I am grateful for the sense that my spirit rises up to meet them, I can smell the pages of those books just looking at this picture, and let it fill my soul with a dream that is ever present within me.