Magic Night Cream, Magic Night Cream, Do Your Job, Do Your Job

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Last night, I put my five-year old Stella to bed.   Well, I snuck in and stole the best part from Rick, who had her in her jammies, teeth brushed and she was in her bed with book in hand, waiting for someone to read to her.  I crawled into her bed by her and read her a story.

I love, love, love doing this with Stella.  I regret not loving it with my older two, Carly and Lydia.  We should have separated them more during the bedtime routine so I could have had more of this one on one time with them.  But mostly we did it all together, which made it so much more exhausting and chaotic and filled with fighting and bickering.  By the end of the day I just didn’t have the energy to deal, much less enjoy bedtime.

But Stella gets the story alone.  And she is so squishy and fresh and funny, and I adore it.  She loves the ritual of the hour, and I do too.  I read to her, and then I say, “Stella….”  as if I am about to begin a great story or tell her a fantastic secret… and she will say, “I know what you are going to say!”  I act surprised.  “How can you possibly know?  You can’t know!”  And she giggles that giggle that makes the cells in my body reorganize themselves so they can be permanently attached to her warm belly and her staccato laugh.

“You are going to say, I ADORE you.”

“Whaaaaaat!?  How did you know?”

I usually smash my face into the side of her soft neck at this point.  I feel so full of the force of my love,I want to breathe her into my body again.

Then, we do magic night cream.

My girls hands, (especially in kindergarten),  become so dry in the winter they turn bright red and crack.  (I now realize  it is a hand-washing and drying issue.)  It’s awful.

I have a bottle of Aquaphor by her bed that I rub into her little hands, and we chant, “Magic night cream, magic night cream, do your job, do your job…” a few times.  Just massaging her squishy hands, still chubby with the vestiges of toddlerhood just greases up the magic of the nighttime ritual.  Last night, I bent to kiss her cheek and she grabs my hair with her lubed up fists and says, “I have one more thing to tell you, mom.”

“What’s that?”  I lean in, her lips right in my ear, bracing for another sweet declaration of her love for me, and she says,

“Boca gum staaaaaaaah… bock, bock, bock bote bote…”

This is what she believes is the first line of the song  “Gangnum Style.”

Which brings on the giggles, and my heart bursts like an over-filled water balloon and I leave feeling like tomorrow, I can do this whole parenting gig all over again, just for the magic night cream, and that laugh.

I am holding tight to this right now, as I am desperately trying to remind myself to be present.  To ignore the phone, burning a hole in the butt pocket of my yoga pants.  To stop checking off the time I am with my kids the same way I check off my chore list.  To quit longing for that glass of wine and a good book, or a moment of peace devoid of Meghan Trainor on repeat and constant bickering.  To just Be in my body.  Be alive.  In the moment.  RIGHT NOW.   There are sensations.  And feelings.  And breathing in and out.  And those things must be noticed, if I am to live a full and meaningful life.  I am trying to wake up and BE.

It’s fucking hard.

So I did some searching, and realized that Stella’s magic night cream is my life line.  My anchor.  My one moment I can count on, where I am fully in my body.

PRESENT.

Right then, I am out of my mind.  I am in my fingertips, smoothing her chapped hands, feeling the dimples still in her knuckles and the meaty part of her thumbs as they connect to her palm, and I don’t need to tell her that I adore her, she knows because my love is a vibrating energy that is coating her, thick and protective.  It’s better than the magic night cream.

It is the invitation to be here, and nowhere else.

Magic night cream, magic night cream, do your job, do your job.

Turn Away From the Light…A Dark Invitation

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And if the dam breaks open many years too soon

And if there is no room upon the hill

And if your head explodes with dark forebodings too

I’ll see you on the dark side of the moon

-Pink Floyd-

I got bitch-slapped on Facebook last week.  I was in one of those on-going, soul draining never-gonna-go-anywhere heated discussions with someone I am FB friends with,  regarding LGBT rights.

—Deep Breath—

Every once in a while, I am deeply triggered by this whole equality thing, particularly when the perpetrators of righteous discrimination are centered in my cultural roots.  So I found myself upset and riled up. At the end of the evening, a stranger stepped in, and basically called me an agent of darkness.  She urged her friend to ignore any and all things that upset her, and to step out of the darkness (me) and only focus on the light.  It was a huge bitch-slap moment for me, and I thank her for it.  It stung, as those moments do, but it brought me right to awareness of why I felt so triggered.

And it has everything to do with the dark.

There has been many times of struggle in my life when my father has told me this beautiful metaphor.  He talks about how the Self is an ancient holy temple, filled with rooms.  Some have windows and sunlight, and we allow people to come into those places.   But inside each temple there are also windowless rooms, places that sit dark and locked up.  There is one room at the center, the inner most sanctuary, called “the holy of holies.” It is the center of the temple, and of Self, where we store our most secret and dark parts of who we are.  It takes courage to open the door to these dark places, shine a light inside, and find out what we have stored there.

I have always loved this metaphor, as it validates a deep yearning in me, and makes me feel brave.  Because I am a person who wants to look inside those places.  And see what is there, to name it, to own it.  It has been my personal quest, to become more aware, more conscious.  My drive to peer into the dark was emphasized enormously by becoming a mother, and leaving my religion.  I have been bravely opening those doors and peering inside, flashlight in hand, an act that directly defies the teaching to “only be in the light.”

What I have found there has been… unpleasant.  All my darkest thoughts.  My ugliest feelings.  Monstrous and powerful fears that I thought were gone, but were just tucked away in hiding.

The opening of those rooms has sent me deep into depression.  Riddled me with anxiety.  Caused terrible, tear-filled clashes with people I love most.

I am realizing now that this temple story has to change a bit.  I have been at war with my darkness. There are hard and unpleasant emotions stored there… jealousy, anger, selfishness, immaturity, bitterness, loathing, rage, unbelievable sadness.  No one wants to feel those.  No one wants to see those stored up in their innermost spaces.  Shining a light in there has made me feel tremendously ashamed and panicked to the point of blindness.

We are so conditioned to keep ourselves in the light. To be scared of the dark. To run from the “bad emotions” and deny they exist at all. In the culture I was raised in, this teaching is so powerful, people are encouraged to never read anything that opposes their point of view, or makes them feel uncomfortable.  To never allow someone to challenge their ideas or discuss things that bring fear or uncertainty.  There are good feelings, and bad feelings, and people are supposed to avoid those bad feelings.

AT ALL COSTS.

And the costs are untold.   We are denying ourselves.  We are cut off from who we really are.  The whole range of human emotions must be acknowledged in order to experience what we all long for as human beings… love and belonging and meaningful connection.  To ignore/deny/negate/make taboo all of our human emotions that are not joyful and uplifting is devastating.  Either we become so cut off from ourselves, we feel depressed and hollow, or we label every “dark” emotion as “bad” and become crippled with self-loathing and guilt for our humanness…. and judgmental of everything.

What I am starting to understand, is that I don’t need to shine a light in my dark places.  I need to open the door, step into the darkness, take a seat, and get to know it.  Welcome all of my Self to exist and be acknowledged.  When I enter these dark places, I now work to become fully present.  A terrifying endeavor after a lifetime of fighting against these unpleasant emotions.  I sit, and step into my body.  Draining my mind, which is constantly operating in the past or the future, and bring full awareness to my body.  Attention to the physical sensations forces me into the present moment.  I notice how frustration makes my throat throb, and anger makes me hands clench and my stomach burn.   I feel how shame makes my toes curl and my eyes close and my body collapse in on itself.  Rather than deny it or fight it, I just acknowledge that it is there, inside of me.  Manifesting in ways that I was  unconscious of before.  These dark emotions are asking for allowance.  The awareness gives it permission to be there, and I am finding that once permission is given, the intensity of the emotion dramatically drops, but it doesn’t disappear.

Following the recognition, comes a question.

“What do you need?”  

The idea that I should welcome these emotions has changed me.  I have been spinning and sinking in a deep swamp of self loathing, feeling that I only had two choices:

1. to completely deny the existence of the dark.

2. willfully explore the dark rooms, condemn the darkness as bad, and fight like hell.

There is another way.  Radical Self-Acceptance.  Which begins by understanding that those scary places have something to say.  When I give it a voice, and permission to exist, I am finding that there is not a good and bad, just wholeness.

A person.

As I begin to sit in my dark rooms in welcome rather than judgement, I realize the scope of this practice. As a mother of three girls…being capable of modeling self acceptance, showing them how to love themselves, to feel welcome in every room, embody all of the human parts, not just the light ones.  Their beauty lives in the dark places too.

There is a reason the innermost sanctuary, the holiest of holies, is a perfectly dark room.

The most sacred work is done in the dark.  The answers to the simple question,  “What do you need?”   are the real reasons we are here.

Why I Do Not Teach My Kids To Respect Adults

 

Last week, I got into a huge argument with one of my daughters.  Big news, I know. It’s the end of the school year, and we are all limping to the finish line, barely in tact.  Actually, it looks more like this:

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This particular dear child had been demanding and sassy all week, and with every interaction,  I was barely restraining myself from losing my grip.  My patience for her pre-teen attitude had withered away, and so it happened… the inevitable freak out.

 

I yelled at her, climbing high on to the untouchable podium of parenthood, and told her that she was being rude, sassy and disrespectful.  I threw in the appropriate amount of veiled threats, couched with “YOUNG LADY” and “LITTLE GIRL”  and finger wagging.  I told her in no uncertain terms that her tone with me had better stop, or she would find herself without a lot of fun in the coming weeks.

I really let her have it.

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She burst into tears, of course.  And I was mad and prickly, so I was not in the mood to hold her while she cried.  I took some deep breaths, tightening myself for the onslaught of her righteous indignation.

 

But she simply said, “I don’t understand.”  I could see the sincerity in her brimming eyes.

 

This took me by surprise.  I had been explicitly clear.

 

“Why are you allowed to talk to me that way, but I am not allowed to use that tone with you?” she cried.

 

I flailed.  Something in her words went deep, and found a raw nerve.   I was shocked to recognize that I understood and agreed with her.

 

The fact that I agreed, that it made sense… it was too much for me.  I gathered my wits about me, raking in the reasons I should stand my ground.

 

RESPECT.  And ADULTS.  And AUTHORITY.  And RULES.  And RESPECT.

 

And she will be a TEENAGER someday.  Lord, save us.

 

The demand for respect as the adult won out, and I rose up to my feet, hands on hips, to tell her how she must show respect because I am her mother, and she is a child and she must learn to show respect to adults and people who have authority!

I am her mother, and I demand respect!

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She cried some more, and I felt like a barbarian, and we got on with our night.

I tried to move on, get over it.  I gathered evidence that made me feel justified.  I mentally reviewed all the gross memes on Facebook, about the “olden days,” and how kids were so much more respectful of adults… and what is the world coming to?  Like these:

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But there was this nagging knowing inside me, poking at the truth. I had been using a “tone” with my children over the past few days, or weeks even.  A tone that says, “I’m so tired of dealing with this,” or a tone that speaks, “You are annoying me!”  or  “Hurry UP!”  A tone of general exhaustion and irritation, where manners and kindness are lost in my coarse, tired demands.

 

I hear it in my voice, as I tell them to get in the car.  AGAIN.  Or pick up their back packs.  Or close the door.  Or go to bed. Or to stop FIGHTING FOR THE LOVE OF HUMANITY.

 

AGAIN.

I hear that edge creep into my voice, and it has stayed.  So even when I simply ask for a hug, or tell them goodnight, it is there.

I realized I have been commanding  my children to have more respect and more control than I posses.  I want my daughter to lose the attitude and that disrespectful tone in her voice, but I have been unsuccessful in showing her the same respect during these stressful and strenuous times.  Not only is our relationship out of balance, her disrespect was important for me to notice rather than rage at.  She stepped up and challenged me to investigate what I believe about respect.

 

So I have given it much thought, lately.  Respect is a word thrown around rather carelessly and is often spoken about with a very contemptuous and entitled attitude. There are many generations that believe that today’s youth have lost respect for authority.   And others who believe that respect is not freely given, but earned.

Social media sites are teeming with declarations like this, which serve to perpetuate ineffectual beliefs about respect.

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I was shocked to uncover some of my own privileged ideas about respect.  It isn’t something I would have been able to own, or recognize in myself just a few weeks ago.
I felt ashamed to recognize that I would not speak to my husband or a friend the way I had been speaking to my children.  In that admission lies the notion that my authority and superiority over them justifies my behavior… I felt sickened by the ugliness my inquiry revealed.

In my careful examination, I began to see deeply ingrained ideas about respect that do not serve us well.   So, I set out to redefine my beliefs about respect.

A reset button, of sorts.

#1  Respect is not a hierarchy.  There is no human being that deserves more respect and deference than another.  We are all deserving of basic politeness and compassion by virtue of our inherent worth as human beings.  Therefore, I do not believe children must show respect to their elders.  They must be taught that respect is at the core of basic human decency. Age is irrelevant.  One day old, or one hundred years old.  A homeless man or a wealthy billionaire.  A janitor or the President of the United States.   Their worst enemy or their best friend.  Their annoying little sister, and yes… their mom.

 

#2  Respect for one another does not mean you hold their behavior in high regard.  We can feel disrespectful about abhorrent and hateful actions.  For bigotry and scorn.  But even the perpetrators of actions we disdain should be treated with respect.  Because at the root of pain, anger, and negativity…there is a hurting person.  A person aching to be seen, to be heard, to feel loved.  And showing them disrespect as a human being only advances their hate.

#3  There is a difference between disagreeing/arguing and disrespect.  As a parent, this detail is crucial.  Because I must not view my child’s disagreement as a form of disrespect.  I want my girls to find their voice… to stand up for themselves… to bravely challenge things…to seek understanding.  I must not contradict this value with a demand for their agreement or silence. Honing these skills must start at home, with their father and I, people who will give them a safe place to practice respectfully disagreeing, taking a stand, advocating for themselves, sometimes forcefully.

#4  Respect is not earned.  It should be given freely, as it stems from the understanding that we are all parts of a greater whole.   It is our way of honoring the human experience, of employing empathy and compassion for every person we interact with.  It is an acknowledgement of the nugget of precious truth at our core… we respect others as we respect ourselves.   The level of respect you show others is a reflection of the love and honor you have for your self.

 

#5  Disrespect is a symptom.  Often, it is a reflection of poor communication or unexpressed, repressed emotion. It is an aching call to be recognized as valuable.  My daughter was being disrespectful to me… it was a reflection of the disrespectful treatment I was showing her… I was overlooking her.

We can never insist on more respect from our children than we are capable of manifesting for ourselves.

 

A week after our fight,  I went on a field trip with my daughter.   On the way home, we cuddled up in our bus seats, I pulled out a surprise stash of her favorite candy, and I fessed up.  I told her I was wrong.  I had not been treating her with respect.

 

This was hard.

 

I felt as though I was conceding some age-old battle between parent and child.  The fear tried to rear up, the fear that told me that if I do not command respect from my child without fail, she will grow into a teenage monster and make our lives a living hell.

 

So naturally, I stuffed myself with peanut M&M’s and shouldered on.

 

I thanked her for being my mirror, always showing me the way to a better self.  I told her how powerful she was, how I felt honored to be with her.   I promised her that I would be more mindful of the level of respect I show her.  I told her that I firmly believe that if you want to be respected, you must embody that respect for yourself, and then let it reflect in your treatment of others.

 

And we finished with a hug, some sour patch kids,  and the most important message of respect I believe can ever be delivered from one human being to another…

 

I see you, my love.

I really, truly, see you.  

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Disney’s Maleficent: How to Protect your Sleeping Beauty and Prince Charming

 

ma·lef·i·cent

adjective:

doing evil or harm; harmfully malicious

This past weekend Rick and I led our three little girls, popcorn in hand, to see Maleficent in all her red-lipped, menacing glory.

Maleficent was the quintessential villain that haunted my childhood dreams…those huge black horns,  green evil spells, spindly fingers and deep, wicked laugh…  She was just so unrelentingly vicious, and her unchecked malicious intent left its mark on my young psyche.

Hence, I couldn’t  resist bringing the girls to see my animated fears come to life.

 

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Disney did an amazing job, and all five of us loved her story.  I did not realize going in, that so much of the original story of Sleeping Beauty would be retold.  But most of the characters in Disney’s Sleeping Beauty also appear in Maleficent, making it a retelling of one of my childhood favorites.

When we got confidently settled into our seats, my four-year old with her blond pigtails and dimpled elbows sat on a booster seat next to me. And when she looked at me with her innocent, wide eyes I wondered what the hell I was doing, letting her watch this:

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I was that parent.  Ah, another opportunity to humbly swallow old judgements.

I pulled her into the bathroom, and while she washed her hands, I quickly explained that Maleficent was actually a mommy named Angelina Jolie. After her job pretending to be scary, she puts down her horns and pulls on her jeans and has dinner with her kids.  Just a mom.

I am happy to report that this strategy worked beautifully, as during the first scary/intense moment in the movie, Stella leaned in and whispered, “This mommy is really good at pretending!”

No one was scarred for life, and we all felt like clapping at the end.

There was just one part that made my toes curl and stomach clench.  One part in which I held my breath and felt totally conflicted.

 

Sleeping Beauty is kissed by the prince.

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Newsflash, I know.

Now, I do greatly appreciate the rewritten version.  In Maleficent, the prince at least hesitates.  He shows some misgivings and even protests, claiming that he and Aurora have just met, and they can’t be in love.

 

All good things, Disney, all good things.

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But he caves under the pressure and insistence of the three fairies, and Prince Phillip kisses the slumbering Aurora.

 

Knowing my little girls were watching this part bothered me much more than the fiery rages of Maleficent or the scary snarling animals.

 

Here’s why.

Disney’s Sleeping Beauty was released in 1959.

Disney’s Snow White was released in 1937.

Two movies, made a long time ago, portraying a man kissing a sleeping woman. Now, I realize that this kiss was an essential part of Sleeping Beauty’s story, and the retelling requires some revisiting… But in a movie theater with my three young children over 50 years later, a man kissing a sleeping woman simply re-romanticizes this action, making it modern and legitimate today.

The kiss still appeared to be an acceptable and chaste course of action, rather than a serious crime.

I know, I know, it’s just a story.  A movie.  A retold fairy tale.  I still have that voice in my head, telling me to “calm down” or “chill out.”   I have tried to talk myself out of this feeling of unease, or the need to write this post and make myself look like  a crazy, overprotective, manic mom with nothing better to do that pick apart a classic romantic gesture, a harmless little kiss.

But.

Parents, this is where it begins.  In the movie theaters when our kids are innocent little boys and girls.  In the seemingly innocuous kiss between prince and princess.

We are all from the generation where we watched movies like Sleeping Beauty and Snow White, and it was all so romantic and sweet.

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But we know that women in this century want more respect than that.  Women want to show up in movies where we are not portrayed as helpless victims and fanciful, silly girls who only care about a prince on a white horse whisking her away.  And slowly, we seem to be gaining ground in our demand for better story lines, at least on the big screen.

(Not so true of Disney’s T.V. programs, as I have already wrote about here).

But there is more to ask for.

It should not be acceptable to walk out of a PG movie in 2014 and allow our children to believe that kissing an unconscious girl is just part of a fairy tale, and not a sex crime. This  action needs to be viewed as inappropriate content for children.  Prince Phillip would not be shown cupping her breast while she slept.  We wouldn’t have trouble seeing that as improper content… but an innocent kiss falls into that same category when the princesses is unconscious.  

We can all see how this dangerous storyline is playing itself out on high school and college campuses across the country, with life altering, devastating consequences.  It is important for us to recognize as parents of young boys and girls, that these subtle messages become part of a greater unconscious.  It matters.  It informs their development and understanding of what is normal and acceptable.  My own feelings of resistance in calling this kiss a sex crime speaks to the power of those subtle messages in our culture.

Those messages that blur the lines between romance and assault do not belong in a movie for kids.   It is our obligation to protect our sons and daughters from the devastating damage that can happen when we do not clearly delineate what is and what is not appropriate behavior.  And we need to start now.

It is never too early to begin having conversations about consent with children, and Disney just gave us all a beautiful opportunity to do that.

We left the theater with a lot to talk about… one of my favorite parts of seeing a movie as a family is the subsequent dissection and discussion.  My girls walked away from the film with a greater capacity for empathy and understanding.  They saw how a villan was created out of  the  agony of pain, heartbreak, betrayal.  They saw how a heart can be hardened by anger and vengeance.  They saw the devastation of revenge, and the triumph of  love and redemption.   I appreciate these ideas being visited more and more in family movies… the world is not black and white. There is a deeper compassion and mercy to be unearthed within a story of good and evil.

And then, we talked about the kiss.  It was a simple and easy discussion, relatively general, but it planted the seed.  One that will grow into further discussions and questions  in a natural way, preparing them for the complicated moments they will encounter in their future.

Understanding consent is more than one conversation.  It is a childhood full of moments where we take the time to point it out.  We have to be vigilant and willing to dissect a song, a movie, a kiss, a story, an idea… not allowing those small moments to slip unnoticed into their minds and become something that leaves them unprepared and unprotected for the experiences that lay ahead.

 

So go.  See Maleficent… be entertained and opened by her story.

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But please, protect our children… don’t forget the conversation after.

 

 

For more information on talking to kids about consent:

http://www.buzzfeed.com/summeranne/30-healthy-ways-to-teach-kids-about-consent

http://everydayfeminism.com/2014/03/examples-of-rape-culture/

http://time.com/40110/rape-culture-is-real/

 

 

Sound Support: 8 ways to Improve Life with Misophonia

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We have now been living with misophonia for almost two years.  Misophonia was a sleeping monster inside my little girl… awakened  during the summer of 2012.

 

Misophonia is condition of extreme sound sensitivity.  It is characterized by an immediate, acute, negative emotional reaction to certain sounds.  People with misophonia experience a fight or flight response to simple everyday sounds like tapping fingers, typing on a keyboard, crinkling wrappers, sounds in speech, eating noises such as chewing, swallowing, or crunching.  The fight or flight response creates panic and rage, and sufferers can become violent and emotionally explosive when they hear these triggers.

 

The easiest way to relate, would be to imagine being trapped in a room with someone who is scratching their nails down a chalkboard and will not stop.  Most people will have a powerful, negative reaction to this scenario… first a cringe, cover their ears… but if the noise persisted,  soon they would flee or get angry and demand that the sound stop.

My daughter feels this intense reaction to small, insignificant sounds.

 

Unfortunately, misophonia triggers can also be specifically focused on one person.  In my daughter, her emerging misophonia presented as an intense aversion to my voice.   In fact, emerging is not quite the right word… misophonia looks more like the sudden transformation from Bruce Banner to the Hulk.  Quick, violent, immediate, and terrifying.

I wrote about that crushing few months in Sound Desperation and Sound Hysteria.

If you have never heard of this condition, you are not alone.  No one seems to have heard of this condition.  Doctors and mental health professionals are unaware.  Which means that as parents and sufferers of misophonia, we are largely on our own, trying to cope with a disorder that looks like a giant temper tantrum.  Without being understood or respected as a true health crisis, misophonia can quickly tear a family apart, destroy relationships, and create a life of isolation and desperation.

Since we began dealing with misophonia, Lydia’s triggers have increased.  She now has powerful reactions to her sister as well, a heartbreaking reality I wrote about it in Sounds of Our Crisis, Living with Misophonia.

Her list of triggers are growing every month.
It has been bad.  Really, really bad.  I will admit here, that there have been weeks of time where my husband and I wondered if we would be able to raise our child.  I have googled  boarding schools in our area, feeling my heart may just disintegrate in my chest like a wet tissue.

 

Two years in, I am relieved to report that things have gotten so much better.
I finally feel like I have something constructive to say!  So, here is what we have learned, and how we are coping.  I want to share it, to help others who are in those really dark places right now.

It seems like every health article out there begins the same way… perhaps because even though we don’t want to hear it, the truth and healing lies in diet, sleep and exercise.

Bleck.  I know.

But essential.

Misophonia is easiest to relate to when you think about irritability.  Moodiness.   It is really hard to understand Lydia raging about the way I say my S’s, but I do understand what it feels like when I am too tired, too hungry, or too inactive.  Human beings are more likely to overreact, say cruel things, tantrum, or embarrass themselves if they are  sleep deprived, hungry, or have a lot of pent up, unreleased frustration.

 

So.

#1.  SLEEP

 

Lydia must have regular, good sleep.  We rarely allow her to have sleep-overs with friends or stay up late on weekends because being tired makes Lydia impossible to live with. We are very, very strict about her sleep schedule.  I am afraid as she gets older this will be harder for us to manage well, but for now, she doesn’t have much flexibility.

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#2. EXERCISE

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We find that she does so much better when she is really active.  We will always have her in a competitive sport that requires exhaustive exercise (like swim and soccer and track) because this makes her feel so much less irritated… and she sleeps better.

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#3. DIET

When she is hungry, watch out.  When we plan poorly and she gets too hungry, or if we get lazy about healthy snacks, Lydia has a much harder time with her misophonia.  It’s an almost guaranteed disaster if she gets into that low blood sugar zone.

 

#4.  HEAVY BLANKETS AND TIGHT HUGS

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Misophonia is worse with overstimulation.  When Lydia is feeling triggered, she will often come get a really tight hug from me.  The squeezing is helpful in reducing sensation and sensitivity, and calms the nerves.

We also bought Lydia a heavy blanket… these are straight from heaven.   We bought ours here…

http://www.saltoftheearthweightedgear.com

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It is a blanket filled with beads or rock.  They come in various weights and sizes.  Lydia sleeps with hers every night, and the heaviness does the same thing as a tight hug.  It calms her overstimulated nerves and helps reduce sensation.  When she is in a meltdown mode, we will send her to her room to calm down, often under her blanket.

#5.   OVERSTIMULATION

 

We got really focused on the sounds Lydia hates, but the trick is to reduce stimulation while masking the sounds she is triggered by.  Bright lights and lots of noise chaos can make the sensitivity worse. We found these apps that have all kinds of noises… rain, static, chimes, wind…

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We turn down the lights, turn off the t.v. and then Lydia can chose one of these sounds to help distract her from her triggers.  We prefer to have this playing because we want Lydia to be able to manage herself with the most mild forms of intervention possible.  But, many times she still has to eat in a separate room, or use headphones to more thoroughly block sound.  It’s a slow process.  Even our four year old will acknowledge in gratitude the days that Lydia joins us for dinner.

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#6.  NEUROFEEDBACK THERAPY

 

For about a year and a half, Lydia saw a neurofeedback specialist, Rae Tattenbaum.  Here is the link to her practice:

http://www.inner-act.com

We were also featured on a local show, Better Connecticut.

Kara’s Cure: Inner Act and Neurofeedback

 

When the misophonia was nightmarish, Lydia would go at least 2 times a week.  We were able to cut down to once a week, and we did that for a long time.  This treatment did help her enormously, and we saw a huge improvement in her coping ability.  In the beginning,  seeing Rae was the only thing that made me feel like I could raise my daughter, the only thing that made our situation liveable. Once we had things more under control, we began to realize that the neurofeedback was not a long term solution for us.  When we stopped the treatments, she would slowly slip back into misophonia meltdown mode.  Eventually, we felt stable enough to look for alternative answers.

 

#7.   HEARING AIDS

In February, we found a professional who had actually heard of misophonia!  We took Lydia to see  Melanie Herzfeld, an audiologist  at the Hearing and Tinnitus Center in Long Island, NY.

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She recommended a set of hearing aids for Lydia, which emit a white or pink noise.  They help mask all of the small sounds that make Lydia go nuts.  She does not have to wear them all of the time, just when she is feeling triggered.

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The hearing aids have saved us.   I was very nervous about getting them, because they are so expensive and also not covered by our  insurance… but worth every single penny.  We bought her hearing aids one day before we drove from our home in Connecticut to Washington DC for spring break.  It took us eight hours. Normally, this would have been an epic nightmare.   We have been on way shorter trips that have been emotionally scarring for all of us, car rides where I contemplated hitchhiking home.

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She wore her hearing aids and watched movies with her sisters and I talked to my husband in the front seat… It was a miracle, truly.  I had been unable to speak while in a car with Lydia for the last two years.  I was so afraid to believe that it was not some kind of random fluke… but we drove all the way home without trouble, and have been doing well in the car ever since!

 

#8.  PAIN MANAGEMENT

The audiologist also strongly recommended cognitive behavioral therapy with an emphasis in pain management.  She stressed the importance of finding someone who will not try immersion therapy techniques (making Lydia listen to the sounds she hates).  Pain management would help Lydia learn coping techniques to redirect and refocus her attention.

 

We have looked around, but have not been actively pursuing this therapy for Lydia right now.  The techniques in #1-7 have helped get us to such a safe place, we don’t feel it’s necessary right now.  But I also know that things change.  Lydia is going to change.  We will grow and adjust with her, and it’s good to know where we will look next if we need more help.

There are websites and support groups popping up on the internet now that can also be sought out.  Personally, I avoid them, although I am sure they are very helpful for others.I can not bear the stories told in those groups.  Most of them just fill me with heaviness and desolation, wondering if I will raise my daughter and never see her again when she is old enough to leave.  Will she be able to call me?  Visit?  Will she know her sisters and be a part of our lives?  Will she be able to have deep, meaningful relationships?  Love, without feeling tortured?

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I have to believe so.  And while I ache for those that are in that pain now, I am not prepared to be a part of the support group.  I can’t.  Because today, things are ok.   I can only look forward and believe that my daughter will be ok, and I will have the privilege of always being in her life.    But I offer all my love and support in sharing our story here.

And I will contact anyone who needs to hear a person say, “I understand.”

We understand.

 

You don’t ‘fix’ your child, you create the conditions for them to RISE.  

-Shefali Tsabary

Poulin, Meganphoto credit: phyllis meredith photography

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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

 

Daring to Lose the Baggage We Carry

 

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Photo Credit: Gardner Edmunds

 

When I was a kid, we had one of those monstrous hard shell luggage cases that could transport obscene amounts of luggage, effectively transforming our minivan into a giant, lumbering turtle. The first summer we owned it, we crammed it completely full of baggage and mom drove us out to Utah from Colorado to visit our family. When we got to Grandma’s, we unpacked the shell, completely emptying the vessel.  And then we just snapped the empty case shut and  left the giant shell trussed up on the van as we shuttled around Utah…my dad had so aggressively tied it to the roof, it wasn’t going anywhere.

 

One night, just before rush hour bloomed on the freeway, as we were zipping north on I-15, the case was thudding and banging on the roof, the hot summer wind was raging through the valley, and my mom white-knuckled the steering wheel to keep us from blowing into the next lane.   Suddenly there was a loud ripping POP! and we watched in horror as our luggage case somersaulted across the median, miraculously through oncoming traffic of the southbound lanes, and down an embankment into a field of weeds.  The case had been aggressively strapped to the luggage rack… my dad had made sure there was no chance of it coming loose.  But without the weight of the luggage inside, the wind tore the luggage rack right off the roof of our van.

 

I find myself thinking so often of that luggage case blowing down the hill.

We are like moving vehicles on a grand adventure, and we each have a giant shell tied up to the roof to carry the baggage.  In our childhoods, that case is packed full of experiences and ideas and grand moments and terrible, crushing loss of innocence.  For the most part, we cannot determine what is packed inside, giving weight and heft to our lives.  It is filled with the baggage we carry with us as we strike out on our own.

 

Most of us, at one point or another, stop to take out the baggage.  And my first real stop was after the birth of my first two daughters.

 

They forced me to pull over and examine what I was carrying.  I had two baby girls, and when began to unpack, I realized I didn’t want the bulk of it.  It was full of fear and molds I had been trying to pour myself into.

 

And guilt.

 

It was filled with desperation and apathetic surrender.   It was filled with hard and glittering notions about womanhood.  It was brimming with hundreds of years of handed down expectation and servitude.   And untold instruments to measure my worth and acceptability and faith.  It was filled with boxes and boxes of unanswered questions that I had been told to put away and not worry about. Injustices and inconsistencies and confusion that was my own damn fault for ever acknowledging in the first place.

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Photo Credit: Robert Faulkner  

 

I unpacked all that I could.  I knew I could not carry it any longer, and I would not be handing it to my daughters.  It was an abandonment of my genealogical legacy, family history, the ideals and mantras and precious cargo of my tribe.

 

I drove away, my case more hollow than full, more light than heavy with burden.

 

We all do this, I am realizing.  In various degrees, this is how we humans roll.  Maybe not everyone.  Some, I am sure, roll right along and do not dare open the case to investigate the cargo, to find out if it is weight we would still like to carry.  But the way we create our own experience, forge our own path, and improve upon the journey for people we love is to look it over, and face what has been packed inside.

 

I changed my life, drastically.  And it was agonizing to leave it behind.  It always is, when we take a close and honest look at the things we choose to carry.

 

I had hoped that I was done.  My act was radical and came from a dire place inside that would be crushed by the weight of unwanted ideology.  And I naively believed I had accomplished what I had set out to do.  I had improved my life, and brightened the future for my girls in untold ways.

It was The One, enormous, painful, transforming reach for more freedom, less guilt.  More discovery, less propriety.  More authenticity, less fear.

But it is not done.  It wasn’t enough, I have known now for a while.  In a slow, anxious, build it is becoming more painfully present.  Just as the welcoming of my first two girls had forced me to pull over and examine the contents of my shell, this last child has done the same.

 

Last night, I put on a white dress, curled my hair, wore bright pink lipstick and heeled sandals that made me well over 6 ft tall.  It didn’t feel like me.  We are staying at a lovely resort in Orlando, and while Rick is working the day away, going to meetings and listening to lectures and schmoozing VIP’s on the golf course, I am at the pool.  And in the evenings, we go to work functions to wander the outdoor gathering, shaking hands with strangers.  I have done this many times before, at annual actuarial conferences ripe with mathematicians and insurance executives.  I have enjoyed the lovely hotels and the chance to tour around various cities and the opportunity to sleep in late, wake when I wish, and leave the daily mothering grind to the grandparents.

 

But last night, with my heels and my lipstick, that haunting presence of the weight I carry made my bones ache with weariness.

 

I no longer want to be just a woman on his arm, his satellite.

 

I have known this for several years now.  The feeling of growing out of your own skin is a slow, building pressure, and discomfort that grows into urgency.  The imminence scares me, it is regrettably familiar.

 

The highlight of the evening was speaking briefly with his boss, whom I had not had the pleasure of meeting before.  In a quick, private moment, she gave me a lovely gift, sharing with me that she had never known a man more openly proud of his wife.  How he speaks about me with admiration and respect and greatly values my thoughts and ideas.

 

Such words, such affirmation of his love was a forceful moment of reckoning for me.

His love for me, his support, his patient and gentle reassurances that he believes in my ability to change my self, to honor who I am and wish to be without fear or apology, that has kept me moving forward.

 

And he knows, as I stand next to him in my heels and lipstick, that I want more.
I do not wish to be a woman, standing forever at the ready to support her man.  I have done this for 12 years, as I was trained to do.

I am so afraid.  It means pulling over once again.  It means going through the baggage, and pulling out pieces of me that terrify.  It seems so silly that the idea of digging out my ideas of what makes me a woman and what I have to offer the world have put me into such a state of terrified paralysis.  Women everywhere have been vigorously doing this work.  Throwing out the limiting patriarchal bullshit and becoming more.

 

These women were not admired and revered in my culture.

 

I am looking at hundreds of years of training and expectation and gender roles and patriarchy. Thousands of hours of prayers and talks and books and lessons on how motherhood and marriage are the pinnacle of a woman’s existence, the shining glory, the only aspiration that matters.

 

I remember the sound of the pop, the tearing of metal as that luggage case wrenched itself free and went somersaulting into the weeds.  The sight of an empty vessel, no longer needed, being ripped away.  It sounds violent and scary and ruinous.  It horrifies us all.  But perhaps, this is the sight we all need to witness.  The carrier of our baggage, being torn away, is the very moment we want to achieve.  When we finally unpack all the baggage that weighs us down… we examine it, we see it for what it was in our lives. We acknowledge how it got there, and our power to release it.

 

And when that case gets light enough, it will tear free and blow away.   We will finally be free to drive away, without the weight… just the vehicle we came in.

 

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Photo Credit:  Gardner Edmunds