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

photo-11

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.

The Little Bastards Won’t Die

It’s throw back thursday, and I’m a virgin #TBTer.

You know those moments where people tell you, “Someday, you will laugh…”

It’s time to start sifting through those stories, as part of my throwback thursday contribution.  Nothing insightful.  Nothing informative.  Just my stories, of survival.

Isn’t that what #TBT is all about anyway?  A way to show the world how things have gotten much, much better?  Here’s proof:

photo-2

 

It’s not entirely true that I have not engaged in throwback thursday.  I love throwing back.

IMG_1651

Ha.

 

This picture was taken a few years ago, in August, just a few weeks after moving to Connecticut.

 

We moved from a brand new home in the dry, dry air of Colorado to a green tunnel of humidity so thick, I swear it rained in my living room.  Like the rain forest.

We bought a house that was slightly older than brand new, it was built in 1929.  They didn’t have air conditioning in 1929.  A factor I did not thoughtfully consider as I planned and arranged this move back in Colorado in the dry, dry air of my well conditioned home filled with vents that pumped deliciously cold air into the atmosphere.

 

We moved in during a New England heat wave.  It was in the mid nineties, and everything had the texture of a wet tissue.   You can tell by how often I have mentioned the heat so far, that IT WAS HOTTER THAN THE SURFACE OF THE SUN.  A steam room, on the surface of the sun.

 

I linger on this misery because it was not the worst part of the moving experience, but it was the factor that I believed would break me.  The level of stress I had been enduring was extreme, (moving across the country with 3 kids, leaving my family and friends, Lydia’s emerging misophonia).  The fact that my bed sheets were sticky-damp before getting into bed and I sweat like a farm animal while I brushed my teeth were details that simply melted my coping abilities into a huge, slimy puddle of boob sweat.

Me:  200-13

Rick:  200-16

 

My mom, who came to help us.  Bless her heart:200-14

But the heat, it turns out, was not the driving force in this miserable scenario.

 

It was so.  much.  smaller.

 

Three days into a truly nightmarish move, my saintly mother was taking charge of the place as I fanned myself in a corner and fantasized about this:

200-9

She was helping me unpack the kids’ bedrooms and sort their stuff.  We were closing in on the final boxes of clothes and stuffed animals and blankets, putting them into drawers, order was being restored… until she noticed my two-year old scratching her scalp.

200-10

My mom parted her hair to take a look, and that is when this little bastard jumped out of Stella’s hair.  Jumped.  OUT.  And crawled across her new bedroom floor.

si-body-lice-houston

LICE.

 

I felt the last of my mental acuity begin to circle the empty bowl of my skull, flushing out my sanity….I lost my mind.  I did what every parent would do first…

 

I googled LICE.  Bad idea.

Then I called the Fairy Lice Mothers, who tried to reassure me that everything would be fine.

 

Yes, there is a Fairy Lice Mother.

Walt-Disney-Characters-image-walt-disney-characters-36668398-500-372

She assured me, I  just needed to follow these simple, easy steps.

 

1. Place all pillows, blankets, hats, stuffed animals that my child had been in contact with in plastic bags for two weeks.

 

2.  Wash all bedding and clothing she has had contact with in hot water.

 

3.  Comb out her hair with their special comb (not the plastic kind) using only detangling spray and water… the poison is just that.  Poison.  And it doesn’t work.  Make sure to comb EVERY SINGLE STRAND OF HAIR from scalp to tip.

 

4. Comb her hair like this EVERY SINGLE DAY FOR TWO WEEKS…. and everyone else in the family too.

 

I literally went ape shit.  The lady on the phone did not know what to do.  I think I hung up on her.

 

If I had any real clue what lice was actually going to do to our lives for the next month, I would have needed a straitjacket and a hypodermic needle to subdue me… but I wasn’t far off.

200-17

You guys, LICE IS THE DEVIL.

 

I am serious.  If you have not had to live in this particular nightmare, then you will simply shake your head in judgement of my melodramatic words, but I assure you, it is true. Especially when you have enough hair between the five of you to supply Lady Gaga with a years’ worth of wigs.

 

Lice is in fact, one of the ten curses in the bible, along with BOILS and LASTING DARKNESS and the DEATH OF YOUR FIRSTBORN.

 

Hmmmm.

 

I think our situation was made slightly more challenging, considering that Stella had been climbing in an out of boxes filled with ALL THE BEDDING WE OWNED for the past two days, and had recently found the dress-ups and put all of them on and then found the box of stuffed animals and set them up all around the house. And then rolled around in them.

IMG_2369

When we found the LIVING BUGS crawling in her hair, she had just been burrowing like a small woodland creature, into a giant mound of all of the clothes that my three children owned. The movers had so thoughtfully crammed it all together into several big boxes, and we had been sorting it all out.

 

And we did not have the washer or dryer hooked up.

Rick had to leave his new job that day due to “a medical emergency at home,” meaning:200-3

 

He swung by the local pharmacy, and picked up a bottles of poisonous pesticides to spread all over our children’s scalps (we ignored the Fairy Lice Mother and went for the kill).   And drove across town to pick up the Fairy Lice Mothers special comb at Aldo.

We spent three hours combing through Stella’s hair.  She was two years old at the time, and on a good day, I had to execute an elaborate hunt/stalk/animal take-down and then pin her in a wrestling hold to get a comb through her hair.

IMG_3005

So you can imagine how things went.  Outside on the porch in the sweltering, suffocating, steam room on the surface of the sun.

 

The instructions on the bottle said that Stella must wear the poison on her scalp for a few hours.  So, shaking from the exhaustion of scaring our toddler for life for the past three hours, Rick and I put a shower cap on her to try to keep her from rubbing pesticides in her eyes and put her in the car, hoping she would pass out from exhaustion as we drove around in the air-conditioning.

 

That didn’t work of course.  She screamed like the lice-potion was blistering her scalp the whole time, and I was terrified it was.  We drove home, and while getting out of the car, one of our new neighbors popped over to say hello.  He was in his scrubs, a doctor at the nearby hospital.  Rick and I, drenched in sweat and lice-poison, holding our daughter on the driveway, shook his hand and introduced ourselves.  We did not offer to introduce our daughter, and he did not ask about her.  He must have sensed something was going on….

IMG_1477

Welcome to the neighborhood.

 

I wish that was the end of the lice story, but it isn’t of course.  Because those little bastards DO NOT DIE.   They broke me, those blood sucking beasts.  They were the curse that inspired this picture, and many, many, many more nights like this one.

IMG_1759IMG_1756

I guess there is a lesson to be learned:   Always Listen to Your Screen Shot 2014-06-09 at 10.39.33 AM

http://www.fairylicemothers.com

Throwback Thursday, indeed.

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:

giphy-1

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.

200-28

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!

200-35

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:

child-respect kids respect

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.

spanking

 

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.  

IMG_5208

Sound Support: 8 ways to Improve Life with Misophonia

IMG_5281

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.

IMG_0704

#2. EXERCISE

DSC_3679

 

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.

DSC_5251

#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

DSC_3790

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

unnamed

 

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…

attachment-63

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.

IMG_3939

 

#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.

IMG_3779

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.

IMG_3780

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.

unnamed

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?

IMG_5138

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

SaveSave

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.

Screen Shot 2014-05-15 at 10.51.32 AM

 

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

Screen Shot 2014-05-15 at 10.55.32 AM

Screen Shot 2014-05-15 at 10.52.05 AMScreen Shot 2014-05-15 at 10.55.19 AM

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!

Screen Shot 2014-05-14 at 9.39.14 PM

*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.

Screen Shot 2014-05-15 at 11.10.16 AM

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.

Screen Shot 2014-05-15 at 10.54.22 AM

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.”

Screen Shot 2014-05-15 at 10.53.54 AM

Photo Credit: Stefanie Marco, KINDSPIN DESIGN

 

 

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

Screen Shot 2014-05-15 at 1.05.19 PM

 

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.

Screen Shot 2014-05-14 at 10.09.07 PM

Photo credit:  Stefanie Marco, KINDSPIN DESIGN

 

I Spent Years Begging My Child to Scream… What I Found In Her Silence

Screen Shot 2014-04-29 at 12.06.57 PM

 

The silent cry.

 

The open-mouthed, white lipped, frozen cry of a child.

 

It begins as a breathy, indignant screech, a shocked outcry that is sharp and quick, followed by silence.  This is the cry that sends any parent running, heart pounding, to scoop up their hurting child and assess the damage.… we look them over, and hold them tight, waiting for the scream to come, when the tightness in their lungs relaxes just enough to release the pain in an ear-piercing shriek.

 

My little girl never, ever screamed.

 

The pain from her injury would be frozen on her face when I gathered her up… she would turn red, then purple, the scream shimmered in her eyes, visceral and bright.

 

I tried to get her to breathe.  To release her scream.

 

I would press her tightly to my body, squeezing desperately, wanting to wring it from her.

 

I would curl her up in my lap, and kiss her frozen face a hundred times in a moment, wanting to wash it out of her.

 

I would hold her face in my two hands, and blow in her face, wanting my own released breath on her skin to emancipate her pain.

 

I would look right into her eyes where I could see it trapped, and beg.

“Breathe, baby, breathe.  You are o.k.  Please, breathe. Breathe.”

 

She didn’t.

 

The scream wouldn’t come, and she would pass out.  The loss of consciousness would make her fall momentarily limp, and what should have been the howling scream of a hurt child whooshed out of her in a complacent sigh.

 

And then she would have a seizure.

 

Her whole body would stiffen impossibly tight, her hands would ball up into  white knuckled fists, and her wrists would curl in on themselves.  There was no scream in her eyes… the light in them vanished.

 

Her eyes were the worst part.  For a moment, she was gone.

 

Doctors all assured us that this just happened to some kids.  The seizure was a result of the lack of oxygen, but did not damage her brain.  There was nothing we could do.

 

For six years, we waited for her to scream.

 

Of course, she was our child that ate danger and speed for breakfast.  She ran everywhere at a wild, 60 degree angle. She had the uncanny ability to consistently find a shard of glass, a razor blade, a broken balloon, hiding in the playground mulch.   She climbed to the tippy top of anything stationary.  We caught her swinging from the chandelier.  Literally.  She has no fear.

 

It was a dangerous time for her. When she got hurt, without that release, the exhalation of anguish, there would not be a breath of renewal. She would lose consciousness and fall if we did not find her fast enough.

Today I am left with the terror I felt as a parent, watching her fall down the  stairs just before I was able to grab her shirt, or the countless times I managed to catch her mid-tumble before she hit the last step.  The crazy leaps off the front porch and down the driveway in one giant lunge to catch her before she face planted into the sidewalk, or off the top of the slide at the park.

 

She has outgrown it.  Finally.  She had her last seizure about a year and a half ago.

 

But  every time I watched the light go out of her eyes, it burned an indelible impression in my memory.  It left a mark.

 

I remember begging her to scream.  Wanting to hear her wail.  The need for release is intrinsic, innate.  I think of her frozen face, unable to give in to the hurt, and I see myself.  Maybe it was the years of holding my little girl as she suffered the consequences of being unable to exhale. …. for I can see it now in my own face when I look in the mirror, and in the tightened faces of others.

 

We need to let it go, before we can breathe in again.

 

My sweet child, stiff in my arms, was a constant lesson in the real consequences of repression… of stifling your voice.  Being authentic about who you are…allowing true self-expression… these are real human needs, not fluffy, frivolous dreams.  There is always a consequence for repressing and silencing who you are.  Holding inside the thunderous release of expression does not make it disappear, and the release of that energy will find a different pathway.

 

The trouble is, it works.  The breath holding, the refusal to release.  We do it, and the alternative reactions feel more controlled and private.

 

So we do it.  We hold it back, we keep it inside, try not to be seen.  We hide.

 

She never screamed and wailed hysterically like other children.  It was quiet and private and gentle-looking to anyone who was not cradling her, watching her eyes go dead,  holding her stiff hands.

 

But she taught me that sometimes the quiet is much scarier than the scream.  And the dangers of refusing to exhale are much more present than in the moments that we allow ourselves to be heard and seen.

 

We get used to hiding, and holding it in.  We think that if we do it quietly, and no one notices our hurts, we are…. Brave?  Meek?  Faithful?  Strong?  Gentle?  Peaceful?

 

I don’t think so. Not anymore.   Being seen.  Being heard.  Speaking up.  Releasing.  Letting Go.  Getting real.  These are the healing ways we reach for peace.  And we find our Self, free.

 

Sometimes, out of habit, it is hard to recognize the things we are still not exhaling.  But the signs are there.  They were with my daughter, too.  I see them in me… in everyone as we are all reaching for a cleansing breath.

 

The days when I realize I have been holding my breath, tight and shallow in my throat.  The moments I notice the little half-moon impressions in my palms because I have been holding my hands in fists of tension.  The curling of my toes in my shoes.  The lack of awareness in my lower half, being so wound up in my thoughts that I lose my grounding.  And the absence of joy makes my eyes look dull with exhaustion.

 

When we notice these symptoms,  it is time to locate the tension within.  Find the hurt, the fear, the unmet need, the truth…

What is it within that you fear being expressed?….

 

… and exhale.

 

 

Disney is Ruining My Kid.

IMG_8658-2

Disney has been ruining my kid…. a job I can do quite well on my own, thank you.

 I know, it sounds drastic.  Don’t worry, I am not going to launch into a ridiculous diatribe about how Frozen has a hidden gay agenda (huge eye roll) or is turning my girls in to glittery, sparkly princesses who need a prince to save them, (we are over that stage, thank god) or that Miley Cyrus grew up and dared to climb out of her Hannah Montana box.

In the interest of being a pretty laid back mom,  who fights against my extremely conservative upbringing, I have tried to adopt a more moderate view of the world and it’s evils.  With my girls, I am trying a more balanced approach, believing that they should not be sheltered constantly from American culture, taught to fear and judge and overreact to everything they see.  My general philosophy has been to allow them to take part in age-appropriate music, movies and t.v.

That said, I may have gone too far…

Its been a brutal winter and  I confess, my kids watched too much T.V.  School was cancelled. ALL THE TIME.  There was only so much hot chocolate and board games I could muster before I would hand them the remote and rock quietly in a dark corner of my kitchen with a bottle of wine.

Now, I did check in with them, shouting “whatcha watching?”  and they would yell, “A.N.T. Farm!” or “Kickin’ It!” or “Good Luck Charlie!”  I investigated, and these shows are all listed as appropriate for 8+.  Fine.  Every once in a while, they would call me in to watch some joke they thought was  “Soooo hilarious, mom!” and I would try not to think about how they should be watching something on the History channel instead.  Kids deserve some mindless, silly comedy with no educational purpose, just like I deserve to watch Sister Wives and Grey’s Anatomy.  No big.

Until.

A few months ago, my husband and I started noticing some differences in one of our daughter’s behavior.  She wasn’t acting like herself, she seemed to be putting on a show.   She would fling her hair about and act like a sassy teenager and use lingo  that sounded inauthentic and contrived coming from her.  In these moods she was extra silly, always looking for a laugh.

When this would happen, I tried to talk to her about it.  I pointed out that it did not feel like her “real” personality, and that people can sense when someone is not being authentic.  We talked about crossing the line between silly and obnoxious.   I stepped up my emphasis on important qualities like kindness, generosity, creativity.   I asked her if she was acting like people on tv, and after much pressure, she would admit that she was getting a her sayings and jokes from the Disney channel.

At this point, no real alarm bells were going off.  She was experimenting, and we were talking about it.  It opened lines of communication for me.  A little hair tossing and Disney “lingo” was not going to ruin her.

But then, this dear daughter got into some trouble with friends at school.  I met with her teachers and spoke to the parents of the other girls involved, and was shocked to hear of some of the social things going on with my child at school.   She is a sensitive, loving, girl who is usually fiercely  loyal and empathetic… the reports of her behavior did not match what I knew of my girl. She was saying hurtful and judgemental things about other girls’, throwing around conceited declarations,  among other shocking things.

Now, don’t get me wrong.  I am all for personal responsibility and I am in no way interested in making lame excuses for my child.  We dealt with the situation and helped her learn painful but necessary lessons about jealousy, friendship, self-control, and hurtful words.

While she was at school during this week, I spent a good amount of time in quiet reflection.  The week’s events had been extremely trying as a parent, I found myself in new territory.  Acting on instinct, I spent a day watching some of her favorite  Disney shows, from start to finish…looking for answers.

I COULD NOT BE MORE HORRIFIED.

Parents.  Are you watching this garbage?

I certainly had not been.  Beyond the quick minute or two, I had never sat and watched an episode of A.N.T Farm with the girls.  Because it is Disney.  How the hell do you go from Doc McStuffins, a show that SAVED ME countless tears at the pediatrician’s office, to this absolute trash?    I so very wrongly figured that a company like Disney would not be promoting cruelty, bullying and sexism in their shows for young, impressionable children.  I was completely mortified as I watched.

These shows are laced with terrible social behavior.   Like the scene in one, where a “nerdy” boy walks up to a pretty “popular” girl and asks her out… she threw her bowling ball and ran away screaming.  *Cue audience laughter*

There were so many examples of rude, mean responses to difficult social situations for kids, followed by the character shrugging it off, recorded laughter, and the characters moving on without showing any realistic emotions.  No anger, no hurt feelings.  Comedy.

I was disgusted.  How in the world will we teach our children to be kind and put a stop to cruel behavior in schools when THE DISNEY CHANNEL is showing these bullying behaviors followed by laughter and no emotional response???    It was clear where my daughter had gotten the impression that these kinds of conceited one liners and arrogant vanity was playful and a harmless way to get a laugh.

Just when I thought I had seen the worst, there was a scene that made blood shoot from my eyeballs.  A pretentious girl, conspiring to create a room-sized walk in closet for all her makeup! and clothes! and shoes!  was asked by two boys to help them with a math problem.   She does.

 To which they exclaim, “Thank you, you are a genius!”

The girl is offended.

 The boys hurriedly fix their ghastly mistake with,   “Oh! I mean you are SO beautiful!”

 ….and she prances away, satisfied.

Excuse me while I heave.

Shame on me for exposing my daughter to this kind of garbage.

SHAME ON DISNEY.

What  talented person working over there in the Disney CO.  believes this is an appropriate message for 8 + girls in 2014?

REALLY???

 They are out to make conceit and rejection funny. They are sending intentional messages to girls about how they should value their looks and their walk-in closets over their brains! Now, I realize that not all children are going to be as susceptible as my daughter was to copying the abhorrent behavior on these shows.  But I have more than one daughter.  And who knows how they have been internalizing this bullshit.  It’s outrageous.

After picking up the kids from school, my girls and I sat and re-watched these shows.  I wanted to gouge my eyes out.  As we watched, I paused it every single time someone said something cruel, every time the fake audience laughed inappropriately at what in real life would be someone’s serious emotional pain.  We talked about what would actually happen if you acted like that with your friends, and how you can’t repair things by declaring “Just KIDDING!”  I showed them the “genius” scene and we had a long talk about the awful and unacceptable message it sends to girls about dumbing down, caring only about appearance, objectification… my daughters got more than they bargained for that afternoon.

As a parent, when the kids are watching t.v., it’s mostly because I need a moment.  To make dinner.  To help someone else with homework.  To gather my sanity.  These few examples permanently damaged my trust in the Disney Channel and the trash they are producing for our kids.

It’s hard enough to raise kids who will have the moral fortitude to stand up for themselves and for each other.  It’s hard enough to teach my little girls to be proud and brave and own their bodies and their brains without apology.  To recognize and condemn cruelty and sexism. It’s hard enough to get a moment to catch my breath and feel like my kids are safe and entertained for 30 minutes under the DISNEY umbrella without unwittingly downloading vain, cruel, and damaging sexist garbage into their impressionable brains.

Shame on my naiveté and trust in the Disney name.

Believe me… lesson learned.