Becoming

The hardest part of the day is the last part. Those six or seven minutes between wakefulness and sleep, as I drift off in the in-between space of moments past and moments yet to come.

Instead of those sleepy, mumbled conversations between two married people, parents downloading their day, giggling over a funny thing a kid said, or offering assurances that the work meeting the next day will go fine.... there is silence. 

Sometimes I unconsciously slide my foot over to his side of the bed, expecting the warm reassurance of his presence.  My toes are always icy, and I used to snuggle them up against his shin.  He'd wince and say "ah, c'mon!", but he wouldn't move away.

Now the sheets are cold.  My toes are icy.  He is not there.

I knew separation would be hard, in the broad sense.  I worried about juggling all the moving parts alone.  I didn't know how I would handle the morning routine all by myself.  And what would I do about dinner?  Do I cook for just the three of us?  The kids only really like to eat about four things, so I mostly cooked for him. For us. Would the kids and I sit around the table, where we ate thousands upon thousands of family dinners, with his empty chair blaring silently at us?  I wrung my hands about the schedule - how much time to spend there instead of here?  How would they adjust? How would I adjust?

What I didn't know, what I couldn't know until I was in it, is the hardest part isn't the big picture.  In many ways, because of his long work hours, I handled many of the logistics on my own anyway. Mornings he was out the door before we were all up. Many nights he worked late, and what to eat or where to eat it never bothered me before.  And managing all the moving parts of the kids' schedule?  Well, that was always my role. I'm a pro at all those things.

The part I didn't expect?  The ghosts. Every inch of my life is our life. Was our life.  Is our life.

See?  It's confusing.

Over there is the bureau we bought decades ago, as a newly engaged couple, feeling very grown up on an afternoon of antiquing.  On the mantle are the metal statues of two cranes intertwined, purchased at a funky little store down the street from our first apartment.  When Greta was born we found a little baby crane. "Look, they are a family now, like us," we said. They whisper to me of what was, what is, and what isn't anymore.

I am surrounded by my most familiar and comfortable space - my home and everything in it - and nothing is familiar anymore.  Or comfortable. 

"We marry people because we like who they are. People change. Plan on it. Don't marry someone because of who they are, or who you want them to become. Marry them because of who they are determined to become. And then spend a lifetime joining them in their becoming, as they join you in yours."  ~ Huffington Post

The funny thing about becoming?  It's not a straight line.  It's not all forward momentum. 

Before I thought of becoming like brick laying - cumulative - each brick snuggling firmly on top of the other as we build.  Upward. Stronger.

Then life happens, and that brick wall is smashed to smithereens.  Every brick is still there, except they lie in an unrecognizable jumble at my feet.  Over there is the brick where we saw our first ultrasound picture.  We made a girl, I whispered to him in awe.  That moment is still there, as solid as it ever was, except now it has a crack down the middle.  All that happy, that certainty of how it would all play out, is altered.

Because sometimes, to become, we have to break apart what is to make room for what will be. 

People do change. We know that for a fact, right?  So why is it so hard to keep up?  To pay attention to the thousands of tiny moments, infinitesimal feelings, decisions, thoughts that accumulate every day?  And then it seems so sudden, when things fall apart, or fall away.  But it isn't.  Because we're always becoming.  Changing.  Evolving. 

But our expectations stay stuck.  It's human nature, I think. I am still that young woman clutching her first ultrasound picture, a Technicolor vision of how my life - how our life - would be dancing in my head.

That vision didn't have alcoholism. Or death. Or cancer. Or depression. Or separation. All these things are just as much a part of my becoming as all the joy, success, happiness and peace.


"Marry them because of who they are determined to become. And then spend a lifetime joining them in their becoming, as they join you in yours."

Ah, yes. Sounds straightforward, right?  All Hallmark card-y.  Hopeful.  Because becoming sounds so positive.  All new-agey and personal growth oriented.

But growth, like becoming, isn't all forward momentum.  Most of the growth I have experienced feels a lot like the opposite, in fact. It feels like zooming backward, blind to where I'm headed, white knuckles bracing for impact. 

It's how we survive the out-of-control moments, the backward zooming moments, that define who we become.

Back to marriage. To becoming, and growth.  How do I ask someone to stay with me as I zoom backwards?  As I cast my eyes at the broken pile of bricks at my feet, only to stare in amazement that I'm the one holding the sledgehammer?

I guess the answer is that I don't.  This moment in my journey is an inside job. 

I can kick and scream and lament what was lost, or I can set about, well, becoming.  

On Simplicity, Serenity and Struggle

I find myself in a tug-of-war.  I love writing in this space, and I miss it.

Following the chaos of my relapse(s) and subsequent 90 days of treatment, I vowed to take a break from living my life so publicly.  I have been doing serious thinking about the role blogging plays in my life, in my recovery.  I have more questions than answers.

I still receive numerous emails from people who identify with my story, have been helped in some way by my words. People offer bits of their own struggles, their own triumphs, and it comforts me, makes me feel less alone. 

I don't have regrets, because despite everything I continue to believe that being open brings more gifts to me than being closed. When I share some of my vulnerabilities with the world, the blessings I receive back are beyond measure.  I am long past worrying about judgment, censure or sideways glances on the soccer field.

This blog has been, in large part, about my addiction and recovery story. But I also wrote about motherhood, creativity, advocacy, balance and family.

The past six months have shown me that I do not need to share all the intimate details of my journey. Some things are meant for the sacred intimacy of real-life: family, close friends and recovery people.  

I have focused on living a quiet, simple life. I stepped away from the day-to-day of running Shining Strong, I took a hiatus from my jewelry businesses and from blogging.

My main focus has been on self-care and my family.  My kids are my priority - after my recovery, of course, because without my recovery I will lose everything.

I find myself in an in-between space. There are lots of changes happening in my life, and I ache to write about them.  But it's not just my story to tell.  What I say here impacts my kids, my husband, my family.  

Because I have shared my struggles here, I am stopped often - even from people I barely know - who look me in the eye and ask me, in a heartfelt manner - how are you?  

I don't know what to say anymore.  I am someone who shares; I find comfort in connecting with people.  I want to be truthful, but I find myself uncharacteristically speechless.  

I struggle with the balance between what is private and answering authentically. It feels shallow simply saying, "I'm fine!  And you?"

So what to do about here?  In the land of One Crafty Mother?  I realize, looking back, that I have never been untruthful or misleading here.  I have written as authentically as I could.  But there is a kind of safety in crafting words to describe my life to the unseen masses.  It's the parts I didn't even have access to myself - the pain, the depression, the grief and anxiety - that got me in the end. Writing is powerful, but it can allow me to skip rocks over the really hard stuff, even as I believe I am digging deep.

So here is what I can say:  I am okay. I have an incredible relationship with my kids, and for this I am beyond grateful.  My recovery is solid. I am able to live in acceptance and surrender and keep it in the day, with lots of prayer, meditation and support.  

Recently I re-opened my online jewelry shops, but I haven't been marketing them aggressively. Like sinking into a hot bath, I am slowing reintegrating into creating again.  It feels good.  I am writing a lot on the side, away from the public eye. It is healing.

I am smack dab in the middle of a fantastic recovery community; I reach out for help.  I stay active, present and involved.  I lean into my feelings, and share them face-to-face with the unbelievable support network I have right here in front of me.

I am also not okay. My husband and I are separating. I won't get into the details, because it isn't my story to tell.  It's our story. It will always be our story, no matter what happens in the end.  We are working together with love and respect for each other, and that's a lot.  That isn't to say it's not hard - man, is it hard, but I find that anger, resentment and fear block my contact with God.  It's simpler to live in compassion and faith. Well, maybe not simpler, but certainly more serene.

I know that God's got us, that we need to row the boat but that He is steering. I know I will learn and stretch and grow. 

Our little family has been through a lot in the past three years, and a lot of it revolves around my issues: the death of my Dad, my cancer, my depression/anxiety, my relapse, my absence during my treatment.  And now our separation.  

I find myself waiting for things to settle down, for life to return to normal again.  I find myself grappling for a foothold, wanting to shake answers out of the Universe because I want to know, dammit, what is going to happen.  

When I do this, when I live in the land of expectation, I suffer.  When I pry my white knuckles off the steering wheel, surrender and ask for help, I am calm and steady.  I know now that this is the only power I have over anything: how I metabolize my world.   

I have the power to let go.  

How My Life Changed In Five Months

We are taking a quick break from our regularly scheduled writing for a word from our sponsor ... that would be me, sponsoring myself.... :)

Even though I'm trying not to make this blog too Arbonne-y (totally a word) I had to share this. Arbonne's products have changed my life - physically, emotionally and financially.

I used to spend SO MUCH MONEY on skin care products (really, it was a problem) that didn't work and were full of hazardous chemicals, mineral oils and/or animal by-products.

I used to struggle with a healthy eating plan, controlling calories without looking hard at WHAT was in the foods I was eating.

I knew I had to do something to earn additional money, but REALLY didn't want to go back to an office job.

The skin care products have utterly transformed my skin.  Just the other day a couple of (very handsome) twenty-five year old young men guessed my age as 34.  I'm 44.

I have been able to maintain a healthy weight for months now with little effort, even during the summer months (which have always been hard for me).

I am able to stay home and work - Arbonne fits seamlessly into the other work I do with jewelry and non-profit outreach.

It's funny, because when it comes to shouting from the hilltops about my non-profit work (including my jewelry which funds my non-profit) I have no trouble spreading the word.  I'm getting used to the idea that Arbonne is the SAME.  It changes lives, and it isn't about vanity, or a desperate struggle to look younger, or thinner.  It's about self-care - using safe, pure products that help us feel good from the inside out.

Check out the final results from my two week Genius challenge (Genius is a patented new product from Arbonne and it's going to revolutionize skin care):

Arbonne's RE9 Anti-Aging skin care regime and the new Genius product combined make it so I don't feel like I have to wear makeup to cover dark circles, puffiness and wrinkles.  Let's face it (no pun intended) - how we feel about our skin does impact our self-confidence.  At least it does for me.

And the results from the 30 day fit kit I did in the spring - not only have I been able to maintain these results for over four months now, I learned so much about my eating habits, addictions (hello, sugar) and how toxins (anything our body can't convert to energy) store fat and reduce our energy. I eat CLEANER, and it's made all the difference.

Got rid of stomach/waist fat by ridding my body of toxins.Increased my energy, slept better, went down two clothes sizes and have been able to maintain this lifestyle.

The only way I can show how Arbonne has changed my life from a financial perspective - while maintaining healthy balance - is this way:

Happy kids and the ability to be with them during the summer, after school, at sports - anywhere.

If any of this interests you - healthier eating, your best looking skin, financial independence and security - please ask me about Arbonne ... either the products, the opportunity or both.  My email is onecraftyellie@gmail.com.

I say this not to put a big sales pitch on you, but because it has quite literally changed my life.  I don't ever, ever write about things I can't back up, or that I don't believe in, and I believe in this with all my heart.

We will now return to our regularly scheduled programming - thank you for taking the time to listen and (hopefully) not un-follow me.

Shame On You, Katie Couric

What's the big deal about Moms who drink?

I want there to be more discussion about this, and not for the reason you may suspect.  Many people think that because I'm an alcoholic, I'm cynical about the press drinking Moms seem to be getting these days.

That's not actually true.

My friend Stefanie Wilder-Taylor was on Katie Couric's talk show recently, so of course I watched with interest.  Stefanie is a pioneer in getting the word out about women, moms and drinking, and a pro at handling media appearances (you may have seen her on Good Morning America, Larry King Live and/or 20/20, among others).  She has helped countless women with her brave, funny and approachable spirit, and I'm very grateful she is putting herself out there with such grace.

I'm especially grateful Stefanie is a seasoned media veteran, because I was taken aback by the tone of Katie Couric's interview with Stefanie and other brave Moms coming forward to have a frank discussion about motherhood, drinking and drug use.

Here is a five minute excerpt of Stefanie's portion of the show:

 "Marile Borden is a Boston mom of two who organized a Facebook page called, “Moms Who Need Wine,” which currently has more than 650,500 followers. Stefanie Wilder-Taylor is a mom from Los Angeles who used to enjoy a drink or two at play dates, but gave up alcohol after a big wake-up call."



I recently heard Katie Couric speak at a blogging conference, and I was impressed. She was savvy, down-to-earth, accessible and funny.

I'm not a fan of the talk-show-host Katie. I realize she needs ratings, but I'm chagrined (but not surprised) that to get them she is sharpening her elbows and playing dirty, trying to pit Marile and Stefanie against each other (unsuccessfully, I'm happy to say, because of both of their professionalism and poise) like some Jerry Springer knock-off.

This show was a great opportunity for informed dialogue. Instead we get Katie mimicking swigging wine from a juice-box shaped wine container and badgering BOTH guests.  Katie Couric is trying to create sides in the issue of drinking Moms, and that gets us exactly nowhere.

Despite the middle-school-playground way this show was handled by the Katie Couric show, it raises some important issues.

Is it odd to have a Facebook page called "Moms Who Need Wine" with so many followers?  Is there something wrong with this?

My answer?  Absolutely not.

I would like to believe we live in a world where grown women (and men) can make their own informed, educated decisions about how to handle alcohol responsibly. Does the entire world have to curb their own behaviors because alcoholics exist?  I don't believe so.

Perhaps a better title for "Moms Who Need Wine" would be "Moms Who Want Wine" - but then, of course, it wouldn't be as catchy (or garner as much media attention - props to Marile for the name .. and I'm not being facetious... it's marketing genius).  I have a good friend who writes for their website, and it's not all about drinking.  It's also about the demands, joys, trials and small victories of motherhood.


Other guests on the show included Moms who take Adderall (an ADHD medication), anti-depressants or anti-anxiety drugs, including one Mom who went from Adderall to meth.

These are ALL serious and important issues: anxiety, depression, addiction.  But what was the title of the show?

"Mommy's Little Helper", with the byline: "What Would You Do To Become A Better Mom?"

And we wonder why women are so concerned with stigma?  About any of these issues?

People say they are tired of hearing about whether or not it's okay for Moms to drink.  I'm tired of it, too.  Do we get up in arms if a man (or woman) has a glass of wine or two over a business lunch?  Sure, they may not be as productive or focused when they get back to work, but are they a danger to themselves or others?  Full time Moms (notice I didn't say stay-at-home?) are, to over-simplify a bit, at work all the time.  I don't believe having a glass of wine or two - responsibly - at home or at a play date is any different than anyone having a drink with colleagues.

Can we please stop the media hype on this issue and focus on where the line gets blurred?  When Moms (or anyone, for that matter) get dependent - emotionally or physically - on a drink or a drug to "get them through the day".  When that relaxing glass of wine (or pill) starts to erode your ability to function? Or your peace of mind?

A Mom who is drinking, or taking needed medication, is not automatically putting her kids in danger, and the media hype about this issue only drives the people with a real problem deeper into the shadows.  Katie Couric's line of questioning for each guest seemed to be: "well, couldn't your 'symptoms' just be the normal stresses of life? I feel those things and I'm not popping pills/drinking".

Can we drop the "Better Mom" wars?  Shame on Katie Couric and her producers for exacerbating this Quixotic phenomenon.  Should a Mom with post-partum depression think she should just "buck-up"?  Should a Mom with crippling anxiety feel she's weak if she needs medication to cope?  Should a Mom who likes to have a glass of wine with friends feel judged?

No.

Not anymore than an addict or alcoholic should feel shame about the disease of addiction.  Being a "better Mom" has NOTHING to do with responsible recreational use, anymore than addiction makes someone a bad mom.  Addicts and alcoholics have a disease - we don't set out to ruin our lives or put our children in danger.

Having said that - and this is important - it IS the responsibility of an addict or alcoholic to get help and get well, once the problem is apparent. Any and all measures should be taken - as drastic as needed - to help someone stop abusing drugs and/or alcohol.  A disease does not give anyone the right to shirk getting well.

 So how do you know? How do you figure out if you're heading for trouble with drinking?  From my own experience - and the shared experiences of many other women - there are some things to look out for:

• Drinking every day at around the same time.
• Thinking about your nightly drink(s) earlier in the day.
• Planning activities around drinking/avoiding friends who don't drink "enough" or activities where there won't be any drinking.
• Sneaking sips/glasses.
• Lying about how much you're drinking.
• Drinking alone more than occasionally.
• Feeling shame about your drinking.
• Having memory lapses or "grey-outs" (where you can only remember parts of things).
• Increased anxiety, sleeplessness or irritability when you can't (or don't drink).
• Always finishing your drink, and noticing others' drinking - comparing your drinking to others.

This is by no means a comprehensive list, but it is a start. Even one of these symptoms could be an indication that drinking is becoming a problem. There is a school of thought that if you're an alcoholic you can't stop drinking without help, and this may be true.  But there is no harm is helping people understand early warning signs. 

Without informed, judgment-free discourse about difficult topics like depression, anxiety, alcoholism and addiction, we don't have a chance of healing. 

And, please, in the name of all that's sane, can we please leave Perfect Motherhood out of this discussion? 

While we're at it, can we leave it out of ALL discussions?

Turn The Page

When the doctor told me that we were having a boy, my heart flipped in excitement and trepidation.

A boy to balance out our little family: one of each.

Greta was five when he was born, and I naively thought I had the "girl thing" down pat. 

But a BOY?  It seemed so foreign to me even though Greta was tomboy-ish; she loved dinosaurs and reptiles and fishing and getting muddy.  She never played with dolls, preferring instead to make up elaborate imaginary games with her Littlest Pet Shops.  Eschewing Polly Pockets and Barbies, she would play vet, or draw pictures bursting with color and story.   I never ceased to wonder at the power of her imagination.

Would a boy be different?  Would we be up to our ears in Legos, trains and toy cars? Would our long afternoons coloring and reading be replaced with building robots and smashing things into bits?

It turns out Finn, just like Greta, defied stereotype.  Thank God.  He is a complex, nuanced little character, full of sharp edges and puffy-heart kindness.

We dutifully purchased a train set, and gratefully accepted armloads of hand-me-down Legos.  They sat in the play room gathering dust for years before I realized they weren't ever going to be played with.  Christmas stockings brought Matchbox cars and action figures that were half-heartedly played with for one afternoon before being discarded.

It took a while to realize the stereotypes of what girls and boys are supposed to love is grossly, even insultingly, simplified.

Finn loves science kits - the grosser the better. He wants to be an artist when he grows up, and spends hours doodling, his tongue sticking out in concentration.  He plays dress up - sometimes in Star Wars costumes, sometimes in Greta's old princess dresses. It never makes any difference to him.

He's pig-headed, as stubborn as the day is long.  Try to correct or criticize him and you're in for a dissertation about all the reasons you're wrong.  When the storm clouds part, he will curl up in your lap like he's still tiny, nuzzle his face into your neck and tell you he loves you.

He wears his heart on his sleeve, this kid. Cruelty of any kind effects him deeply.  He loves playing with girls, he says, because they don't "try to be right all the time".  I refrain from explaining the concept of irony to him.

He loves gleefully, passionately and with reckless abandon.  He's never embarrassed by grand displays of affection.  I try not to dread the day this quality disappears.  Maybe it won't, but I worry it will be pushed down under layers of teenage cool-ness or angst.

He received a little spiral bound notebook as a gift recently, and announced he was going to keep a journal.  He dutifully wrote in it the first night: "this weekend I went skiing at Loon and I had a good time".    After studying his handiwork, he ripped the page out and crinkled it up.

"I'm going to make a journal about you and Dadda," he announced to me.  "Don't look."

The next morning he came downstairs grinning from ear to ear.  "You can read my notebook if you want," he said. "Just wait until I'm at school".

So I waited, impatiently, for the yellow bus to drive away.  I came inside and found this on the cover of the notebook (started on the back, because you can't write on the plastic front):

"Love, Caring, Happy, Nice"

The first page revealed this: 

 "This is just the start turn the page"

This is the first entry:

 

"Today my mom and dad wher being the best mom and dad in the world"

Oh, my heart. 

Raising kids is full of endings and beginnings.  I find I mourn the endings more than I value the beginnings: when he lost his front baby teeth or when he stopped holding my hand in public, for example.  To me these seemed like innocence lost, the beginning of his pulling away from me. 

But they aren't just endings.  They are the beginnings of the next thing.

Turn the page.

Dumb Ways To Die (a.k.a How To Survive Day 9 of February Staycation)

Day 9, February staycation, 2013.  What better way to pass the time than to make a music video?  Now you all can have this song stuck in your heads like I have for the past nine days.

You're welcome.

Valentine

"It's okay, Sweetie," I whisper, bending over to kiss her forehead.  "I'm here, and you're going to be okay."

Greta chokes back a sob, tears streaming down her cheeks. "Okay Momma," she says, looking at me with wide, scared eyes.

~~~~
 
She's home sick.  Because of the blizzard and the subsequent power outage, we've been trapped in this house for six days.

School reopened on Tuesday, and I woke with a spring in my step, happy to have power back and the kids in school.  We'd been on top of each other without electricity or showers for four days, and I was eager to get back to the routine.

I found Greta quietly crying in her bed, holding her head.  "It hurts," she said.  "Everything hurts."

Shhhhh, I said, my heart sinking. It's okay. Just go back to sleep.

I shuffled Finn off to school and mentally rearranged my day.  It's probably just her sinuses, I thought.  Things will go back to normal tomorrow.

That was Tuesday.  Today is Thursday and she's still suffering from crippling waves of nausea, headaches, heartburn and body aches.

She woke up this morning with bright eyes, telling me she finally felt better.

I smiled to myself as I listened to her giggle with Finn while they prepared for school.  I hadn't heard that sound in far too long. 

Everything was fine until she put her backpack on and went out to wait for the bus. I saw her wincing, holding her head, and she turned to me and said, "Oh no, Momma.  It's BACK" and burst into tears.  "I thought I was all better," she sobbed.

She rested her head on my shoulder, shoulders heaving.  "But I WANT to go to school!" she cried.  "What do I do?"

I placed my hand lightly on her forehead, felt the heat rising from her body.  I bit back a heavy sigh and said, "Head on inside, honey.  Obviously you can't go to school yet."

This made her cry louder, and she stumbled indoors, flopped onto the couch and dissolved into hysterics.

I sat in the cold sunshine outside waiting for the bus to pick up Finn, feeling close to tears myself.  Irritation welled up inside.  I just want to have a normal day, I thought.  I'm behind on everything. This is so aggravating.

Finn spun around in the driveway, laughing.  "Hey Momma!" he yelled.  "Happy Valentine's Day!"

My heart lurched: Valentine's Day?  We've been so discombobulated I totally forgot.

Valentine's Day. I'm transported back one year to the day.  At this time one year ago I was staggering  to the car, heading in to the city for my very last radiation treatment. Nausea and searing pain were the norm.  A good day meant that I was able to sit up in bed and talk to my kids.  I hadn't eaten solid food in weeks, getting nutrition exclusively through my feeding tube. I weighed 129 pounds - about what I weighed in 8th grade - and my neck was a flaming, oozing red sore both inside and out.

I remembered with a rolling feeling in my gut how scared I was that day.  The idea of being locked into that head mask one more time, to submit to the poisonous, healing rays, was almost too much to bear.  Almost.

Finn laughed and waved to me before he got on the bus, and I waved back with tears in my eyes, grateful for the warmth of the sun's rays on a cold day and the feeling of my sturdy, healthy body.

~~~~

I wipe her damp bangs off her forehead and rub her sore back.

"Thank you, Momma," she whispers, her eyes closing.  "Thank you for taking care of me."

I rest my head on the pillow beside her.  "That's what I'm here for," I smile.

The Ghosts We Knew ~ Absorbing Tragedy and Finding Gratitude

I'm not talking about it much. I don't even think I'm actively thinking about it much, but I know I'm more profoundly effected by last Friday's CT tragedy than I'm even letting myself understand.

I sat down to do a holiday post - some funny anecdotes, cute things the kids have said, how Finn still fervently believes and I think Greta knows-but-doesn't-want-to-know.

I couldn't write a word. My head was full of all those people facing this season without their kids.

And I felt scared right down to my bones.

I'm personalizing it a little bit, I can't help it.  Losing my Dad last year brings up all sorts of stuff when sudden deaths hit (not to say this is the same - it isn't - but it's one of the "cage rattling" experiences where you realize life turns on a dime).

This time last year I had just started chemo and radiation and I have so much to be grateful for. SO MUCH.

But still, those families in CT won't leave my mind. I'm praying a lot; even when I don't even realize it.

So I didn't set out to do a "sad" post about loss. It just came.  Anyone who has ever lost a loved one knows what I mean about holidays being a little harder. I start imagining the parents of those children and my brain kind of shuts down - SLAM - and then on some odd level I feel unworthy of happiness. Even though I know that's selfish fear talking, I can't help it.

I'm holding my kids extra tight, praying extra hard, wishing I could have assurances that none of us are ever granted.

So tonight I leave you with this song my Mumford & Sons (please listen - it's gorgeous - but you may want a tissue handy) called "The Ghosts We Knew".  Here are the lyrics, and then down below is a widget where you can listen to them as you read.  Send some prayers to those suffering this year. Wallow in all you have, and hug your loved ones tight.

The Ghosts We Knew, by Mumford & Sons:

You saw my pain, washed out in the rain
Broken glass, saw the blood run from my veins
But you saw no fault no cracks in my heart
And you knelt beside my hope torn apart
But the ghosts that we knew will flicker from view
And we'll live a long life
So give me hope in the darkness that I will see the light
Cause oh they gave me such a fright
But I will hold as long as you like
Just promise me we'll be alright

So lead me back
Turn south from that place
And close my eyes to my recent disgrace
Cause you know my call
And we'll share my all
And our children come, they will hear me roar
So give me hope in the darkness that I will see the light
Cause oh they gave me such a fright
But I will hold as long as you like
Just promise me that we'll be alright

But hold me still bury my heart on the cold
And hold me still bury my heart next to yours

So give me hope in the darkness that I will see the light
Cause oh they gave me such a fright
And I will hold on with all of my might
Just promise me that we'll be alright

But the ghosts that we knew will flicker from view
And we'll live a long life

Turret Thinking, A Health Scare and A Message (or two) From The Universe

I appear to be in the midst of a creative explosion.

Back in the late summer, I told myself (and some recovery friends, and my yoga instructor) that I was going to focus on self-care in the fall.  I was still healing physically from the cancer treatments, but feeling better every day.

I joked and said I was going to postpone my world domination plans until after the first of the year, at least.

I made it until about late October, and then my creative brain went a little nuts. In mostly a good way, but it's got me wondering where is this all coming from?   I don't say this in a braggy way (because I'm not sure it's something to brag about anyway) but in the past few months I have launched a new internet talk show/website/twitter page, published a book, sold a record amount of jewelry with the revamping of my newsletter with more attention to marketing, and hired a web designer for a last, bigger project I'm not announcing until January or February.

Some of my close friends, who know me well, have called me on this whatever-it-is I'm doing thing. It's a bit manic, and I freely admit that.  The thing is, I'm happy.  I definitely get overwhelmed, but I've asked for help with my creative babies (and am SO grateful to get it from so many lovely, compassionate, creative people) so at least I'm not doing all this alone anymore.

Then I was meditating the other day and it came to me - I knew where this creative explosion was coming from.

I spent six months incapacitated by cancer, unable to do much but think and sleep.  And think I did.   I thought about what really matters; a life threatening illness will do that to you.  Of course family came out right at the top of the list.

But another phenomenon happened as well.  I've always had a crazy creative brain.  Heather and I call it our monkey brain.  Having a shortage of monkeys (ideas) has never been a problem for me.  I was only happiest when I was madly chasing a dream or a new idea or building something online or talking to someone about building something online.

Basically, I was running from the drudgery of real life. Endless amounts of laundry, dinners, homework, baths, packing lunches, cleaning.  Letting my monkeys run wild was my escape - the antidote to my self-inflicted "I'm more than just a Mom" syndrome.

I was running from.  Not towards.

What cancer did - or rather what that forced stop did - was cause me to re-evaluate where I spend my time, even my mental time, because suddenly that was a lot more precious than it used to be.

As I emerged from my illness, began to physically feel better, I realized I have a mission.  I've had it all along, but it has been scattered.  I said at a round-table discussion recently, "I like to build my castles from the turret down. Turrets are pretty and everyone looks at them and I like that. Then I get to the last brick at the foundation and find out I'm building on a swamp".  I'm impulsive, and I like starting at the most interesting (and, let's admit it) noticeable part.

I've always had a mission - help people (especially women and mothers) who struggle with addiction and/or recovery feel less alone.  My mission is not to run around getting people sober.  My mission is to throw the doors of the stigma and darkness and secrecy and ignorance surrounding the disease of addiction WIDE OPEN.

This creative explosion is because I know what I want, now. I know why I'm doing it. Even the jewelry is tied to my mission.  It all folds back in on itself, and I'm getting advice (new anti-turret behavior!) on pulling my mission together into something even tighter, more meaningful and structuring it in a way that it can reach even more ears.

I'm running towards, and it feels really good.

And then yesterday I had a scare.  At the risk of sharing too much information, I woke up yesterday morning with a mouth full of blood, and it wouldn't stop bleeding. I didn't know where it was coming from. It was terrifying.  As luck (HA! I don't believe in luck any more) would have it I already had a radiologist check-up scheduled for that day. I wasn't going to go, though, because I'm to busy and was feeling so great.

Sometimes the Universe whispers to you, and sometimes it SCREAMS.  I looked heavenward, through my fear, and said "point taken".  I should never, ever be too busy to take care of myself. I was feeling so good, so far away from Cancer Land, so distracted from how recently I finished treatments.

Suddenly there I was slammed back into Cancer Land - full of fear and awfulizing thoughts and "shoulding" all over myself. I should be beyond this fear, I should be able to handle this better, etc.

I took a deep breath, called/emailed and texted some sober friends and told them where I was headed, what was going on, and got them lined up in case I got bad news. I can't be left alone with bad news.

I headed into the Radiology Department at Mass General Hospital, full of fear, spitting blood into tissues.  Why now? I thought to myself, playing the victim. Things are going so well. 

For some reason you always wait at least an hour for a scheduled appointment,which doesn't do much for rising panic and fear. My phone was buzzing away with encouraging updates from friends, which helped so much, but finally I turned the phone off, centered myself, and meditated.  Me. Meditating in a cancer ward.  I never, ever thought THAT day would come.

I sat with the center of myself for a while, counting my breaths and listening to my strong heartbeat, when suddenly I heard the first jingling bars of beautiful guitar music.  I opened my eyes to see a woman playing the guitar and singing with a circle of children with cancer - all full of smiles and clapping along to the beat.

Perspective? Firmly in place.

My appointment was fine. I'm okay. They think the blood is from dry air/sinuses, and when they scoped my throat, they said "it looks fantastic".  I have a lot to be grateful for.

I drove home thinking, hard, about how lucky I am to have found the thing I want to do with my life, for as long as I can afford to do it.  Cancer gave me this gift. I don't know if I have a day or sixty years, but I intend to make the most of whatever time I have left.

The other lucky (HA!) things? That afternoon I had both my cancer support group and a recovery meeting to go to.  I dumped all this out to people who understand, and felt a million times better. Sometimes the Universe Screams, but sometimes it Pats You On The Back, too.

I have a lot of work to do, some dismantling of turrets and some laying of foundations on solid ground, but I'm excited.  I can feel in my bones that it's going somewhere good - and I don't mean wild financial success or millions of people staring at my turret.  I mean my purpose, my heart song, the footprint I'm meant to leave in this world.  As long as I can focus on balance, self-care and support, I will be okay.

Knowing my mission in life, being so certain it's why I'm here, is so freeing. Even though I'm busier than I've ever been, I'm calm (usually - I have my moments as I recently posted about,, I guess I should say I'm existentially calm). I'm purposeful. I'm focused. I'm able to follow my mission and spend time with my kids because those other monkeys that don't fit in my life aren't there anymore.

It may sound odd to some of you - I was telling a friend all this recently and she said, "Well, DUH!  I think you may be the last person to see this, you know."

But she doesn't understand how many monkeys have gone silent, and how many I've let run free. If the monkey doesn't fit my mission - even if I think it's a really good idea - I'm letting the monkey go.  That's HARD for someone like me.

I am still trying to prioritize self-care. I go to yoga, my cancer group meetings, my recovery meetings.  I'm still searching for that elusive balance, but because I'm on a heart mission it all feels like part of my balance.

And I have NO idea where it's going. I'm not planning that part - that's turret thinking.

I'm opening my heart (not my monkey mind) to the messages the Universe sends me (or hurls at my head, depending on how much I'm really paying attention).

I'm just laying the next brick, as carefully I can and with lots of help. advice and more than a little prayer.

I can't wait to see how the castle will turn out.

Truthful Thursday - Parenting a Special Needs Child

***Submitted by Anonymous

A note from Ellie: it takes so much courage to write a piece like this - every mother, not just mothers of a special needs child - can identify with a pang of shame about their kid.  NO comments that are inflammatory in any way will be tolerated.  This is a community of empathy and understanding, so please offer your support.  Thank you.

This morning, I drove around town looking for day cares for my younger daughter.  A few years ago, this process was very easy. Back then, I was searching for a spot for my now-3 year old, a clever and witty kid who has always exceeded any goal put before her. Back then, I bounded in to each Director’s office, declared that we needed a daycare, and was met with a welcome party. They practically begged me to enroll.

But with my 1 year old, the process is much more difficult and brings about very painful feelings of shame. My younger daughter is beautiful, smiley, and loving. She will reach out to any stranger and quickly bury her face in his shoulder. She will stand at her sister’s train table and laugh with glee at just the experience of being alive. She teaches me about true happiness. But she also has a very rare syndrome, one that causes developmental delays along with some health problems.

So at 15 months old, she isn’t walking or talking. I’m quick to say that she’s cruising, but she really isn’t. Cruising signifies gripping onto the couch and moving her way along. She’s taken a step or two, but I certainly wouldn’t call it cruising.

Today, when I met with each successive Director at another prospective daycare, I bragged that she was cruising. You see, they won’t move her into the toddler room until she’s walking. She needs to be “steady on her feet and confident.” Until she reaches that milestone, they’ll keep her in the infant room with 6 week old babies. However, sitting in an infant room all day will impede her development because she needs to learn from the older kids. But the Directors are adamant that any child who isn’t walking needs to be with the babies.

 All day long, I’ve had to explain her delay – had to reveal her syndrome. And I felt such shame. I’ve gotten way past the point of blaming her for any of this. I’ve moved well beyond those heart-wrenching and hurtful feelings of only a year ago. But I had to reveal that my child isn’t perfect. I had to explain the characteristics of her syndrome and then, upon seeing one worried look after another, had to follow-up with a happy-faced, bubbly disclaimer: “She’s doing so well though! She’s practically a typical child!” At one point, I said, “You wouldn’t even know there was anything wrong with her!”

That’s when one of the Directors looked at me kindly and said, “There isn’t anything wrong with her.”

I felt such shame. I’m supposed to be her unconditionally-loving mother. And I need someone else, a stranger, to tell me that there isn’t anything wrong with my child?

 But…if there isn’t anything wrong with her, then why did the Director then say: “Of course, I’ve never heard of this syndrome. So I’ll need to check with HR…”? Her sentence trailed off, but it’s obvious that she meant “…before we accept your application.”

I want so badly to accept my daughter for who she is. I don’t want to feel any shame or embarrassment when talking about her. But every time I have to beg to get her into another daycare, I feel that I’m explaining away who she is. I’m asking strangers for forgiveness over the needs of my own, incredibly special child. 

On Being The Mom

"Okay, Mom," chirps the nurse, "here are your scrubs; you can go change there, with Greta, and meet us in the prep room shortly".

We're up early (5:45am) for Greta's tonsillectomy and adenoidectomy, which is taking place back at the very same hospital where I had my cancer related surgeries over the past year.  It's one of the best hospitals in the world, and for this I am grateful, but the flashbacks are still startling.  

I help Greta into a cute hospital johnny with 'tired little tiger' written all over it.  She is quiet, contemplative, but doesn't seem nervous. 

I pull on my blue scrubs and she giggles. "Doctor Mom," she says.

Trying to keep the atmosphere light, but realistic, I prattle on about what she should expect. The "rolling bed" (stretcher) and the bright lights of the Operating Room.   How the scariest part is lying on the operating table waiting for the anesthesia to kick in.  How it feels like you just blink your eyes and it's over.  

"Okay, Mom," she whispers. I can tell the nerves are building, but she's handling them like a champ.

"Are you ready, Mom?" the nurse chirps again.  "Let's get her onto this comfy rolling bed and head on down to the OR."

Only one parent is allowed to scrub up and go into the operating room. Steve waits in the same waiting room he sat and waited for me, three times.  We picked me to accompany her because I know the drill so well, but I have to work hard to keep my poker face. 

There is a slight delay before they can wheel her down the hall, so we stand there for about five minutes - Greta on the stretcher and me silently holding her hand.  I hear a sniff and look down to see silent tears running down her face.

"It's okay to be scared," I say, leaning close.  

She nods.  

"I was scared at this point, too, so I remembered that I was in the best hospital in the whole world for operations on ears, noses and throats.  People come from all around just to have surgery here."

She wipes her eyes. "Even Egypt?"

"Yes, even Egypt," I reply.

"What about Transylvania?" she quips, and I look down to see a sly grin on her face.  My heart swells at her bravery, and how she uses humor to deflect fear, just like her Momma.

Eventually we roll on down the hall, and I can feel her shaking a little.  Doubts creep into my mind; is this surgery really necessary?  I know in my heart it is, but now that we're here I want to say never mind.  Having had my tonsils out so recently, I know what recovery is like (albeit easier for kids) and voluntarily putting my kid through pain feels a bit barbaric to me at the moment.

"Okay, Mom," says the anesthesiologist.  "I need to speak to you over here for a sec."   

It occurs to me that I've been addressed exclusively as 'Mom' for the past hour.

I'm the Mom.

When did I become the Mom?  Suddenly it seems impossible that I'm in charge. Of anything, letting alone electing to let my kid have surgery.  

"She'll roll her eyes back and convulse a bit when the anesthesia kicks in," she explains. "That's totally normal."

My stomach does flip-flops. I want to run from the room.  I don't know that I can do this. I know I will, but I don't want to.  

"Once she's under you can take her stuffed animal and go to the waiting room," she explains.  "Don't worry, Mom. You're doing great."

I step over and hold Greta's hand as they slip the mask over her face and start the flow of cherry-flavored anesthesia.  She's awake longer than I thought she'd be -- first looking uncertainly at me, then blinking slowly, and then her eyes roll back and she gives a shudder.  

And she's out. 

Logically, I know she's going to be okay.  But witnessing that makes it seem like she just died right in front of me.  

"She's just fine, Mom," says the nurse.  "We'll be out to let you know how it went shortly."

I grab Bushy the Dog and head out to the waiting room.  On my way back down the hall I think of the parents with chronically ill kids who have to do this all the time. I think of how much better Greta will feel when this is all over and she's healed, how much better she will sleep.  I grope for gratitude, because I can feel myself slipping into a selfish kind of fear.  

Everywhere I look are memories of my own ordeal, and I have to remind myself that was my ordeal, not Greta's, and today is about her, not me.

Fifty minutes later I'm next to her in the recovery area as her eyes flutter open.  

"When will the operation happen?" she asks, and I smile and tell her I said the same thing when I came out of anesthesia.  

"It's all over, and you did great," I tell her.  "All the nurses said so."

She clutches Bushy in one hand and my hand in the other as she drifts in and out of sleep. 

"Good job, Mom," says the nurse.

I'm the Mom. I'm her Mom.  I get to be her Mom.  

I am so lucky.

On Caterpillars And Not Taking Over The World

Day One.  New beginnings.  Two kids in school full time.

I shuffle my newly minted 4th and 1st graders onto the bus, come inside and wipe a few tears away.  I don't know what the tears are about, exactly.  Nervous anticipation of what comes next?  Gratitude that I'm back, from cancer, that I get to be the one to put them on the bus and meet them at the end of the day?  Fear of the booming silence in my house?  Relief?

Probably all of the above.

As they were waiting for the bus, Greta turned to me and said, "Mom, I have the caterpillars".

Usually they are described as butterflies in the stomach, but Greta calls them caterpillars in her
throat. Much better description, I think.

"I have them, too," I told her.  "And I had them every first day of school, ever."

She gave me a tentative grin.  "They're wiggling.  A LOT," she said, and giggled.

"I'm not nervous at all," Finn chimed in. "At least I don't think I am.  What's my teachah's name again? What's my room numbah?  Oh.  I think I have the catahpillahs, too."

Greta put her arm around him, glad for a little brother to comfort.  "Stick with your friend Tim*", she said. "He's on your bus and in your class. If you stick together you'll be fine."

I watched from my perch on the porch, sipped my coffee, my heart swollen with gratitude as Greta wrapped her arms around Finn.

Of course, as the bus approached, she gently pushed him away and whispered, "Now, don't talk to me."

I always seem to see milestones as endings.  No kid at home to take care of, lots of empty silence where before there was constant noise.  My identity isn't totally wrapped around my kids, I'm grateful for that, and I have jewelry orders to make and the gym to go to and phone calls and emails to return.  I can focus on my other life for a while.

I'm trying to see this as a beginning, not an ending.  But, truthfully, it's both.

And today? I feel their absence in a semi-scary, semi-grateful way.  I'm learning that opposite emotions can co-habitate in my mind.  Scared and grateful.  Nervous and excited. Empty and full.  Closing and opening.

Today begins my regimen of self-care. My promise to myself that I won't try to take over the world in these first few months of two kids at school. That I'll take small bites - do something healthy for myself every morning - write, exercise, meditate, do yoga, read - before I start my day. That I won't go nuts cleaning the house, or spend hours messing about on the computer trying to create a new website for my business (something I have no business trying to do but it would get me out of my head for hours), or exercise like a fiend.

It's my time to spend some time with me. Maybe that's why I have the caterpillars. Spending time with myself can be scary for me, because I get all crazy nutso about what it all means, who I am supposed to be, have existential crises.

I'm dialing back, not up, and that's different for me.  I'm giving my body and mind time to heal from the last year.

I'm all talking smack today - here on Day One.  So call me on it, friends.  Let's see how I'm doing on Day 15, or 21 of my non-world-domination campaign.

Right now, though, I'm off to sip coffee, stare out at the rain and listen to the booming silence.



*not his real name

I Wasn't Expecting This

I'm sitting at my computer, trying to think, but I'm distracted by the thumping of little feet upstairs.

They are playing some kind of game with their stuffed animals; elaborate skits that involve music and role-playing and can go on for hours.

I can't make out their words, but I can hear Greta's lilting voice, and Finn's lower, scratchier one (is it me, or is it already getting a little deeper?) as they laugh and argue good-naturedly about the rules of the game.

I didn't expect this.

I didn't expect that at almost 10 and almost 7 they would still play with stuffed animals, that they would still enjoy each other's company so much. I know I'm lucky; I know not all 10 and 7 years old get along like mine do. That's not bragging, because it has nothing to do with me.  It's all them, and their sweet souls.

There are changes in the air, though. A twinge of cool air in the evening, sometimes even carrying that distinctive smell of autumn.  Some leaves are changing (changing!) in patches, and some are starting to fall to the ground.

There are other changes, too.  As Greta approaches tween-hood, there is more eye rolling, more "Finn! Leave me alone!", more bursting into tears for no reason.  It's coming, I know it is, and so I'm wallowing in the mostly-sweet of the way things are right  now.  I try to stay in the moment - OH, I try - but a little voice in my brain whispers - is this the last sweet summer?  Is this the last summer of stuffed animals?  

Finn starts first grade, and so for the first time in ten years both my kids will be gone full time - all day, every day, at school.

I spent so many years longing for this day; mired down in diapers or whiny kids who couldn't speak well enough to articulate what they wanted.  Days when I couldn't just go to the gym, or visit with a friend, because my schedule was irrevocably intertwined with theirs.

Now that day is only a couple of weeks away, and I'm surprised by how my gut twists at the thought of them both being away for so long, every week.

I wasn't expecting this.

Again, I try to stay in the moment, not project, not have too many expectations, but I have to acknowledge that twisting.  I'm not great with a lot of unstructured time. My inclination is to start my plan for world domination - make HUGE plans, turn my jewelry business into something big, write that novel, get a full-time job - all to run from too many hours alone with me.

Instead, I'm going to try what I'm thinking of as mini-structure, and it's all about self-care, self-love, and peace of mind.  I'm six months past cancer - I have to keep reminding myself of that - and I need to take this time to take care of me.

Each morning I will do some form of exercise. Not in that over-the-top-train-for-a-marathon-hate-myself-if-I-don't-workout kind of way, but in a move-your-body-Ellie kind of way.  Yoga. A walk in the woods. A trip to the gym.  Low-key, gradual, simple.

Every day I'm going to make jewelry just for the sake of making jewelry, not because I need to make thousands of dollars immediately. I'm going to resist the urge to learn metal-smithing (something I really want to do) just for a while.

I'm going to meditate. Even if can't quiet my mind, I'm going to sit, with no noise, for a while each day.

I'm going to read for at least half an hour. Every day - right smack dab in the middle of the day. Force myself to stop and just read.

I'm going to take time to write - offline, in a notebook - start that journal up again.

I'm going to go to daytime recovery meetings.

The day will come (who knows when, maybe sooner than I think) when I have to either ramp up the jewelry business or get a job.  But not right now, not yet.

I'm going to spend some time with me, who - in the past - has been my least favorite person to hang around with.  I'm going to acknowledge that twist in my gut that will miss my kids.

I know I'll adjust. I know it will take time.  I'm glad that the deepest part of me doesn't want them to go.

That's love.

Push Pull

I'm back on the 7th floor of Massachusetts General Hospital, the Cancer Center.  I haven't been here in a while; it's a six-month post treatment check-up.

I don't want to be here, I think.  I wish cancer was one of those things you could just check off your list and be done with forever.  I'm pushing, pushing the reality of my situation away.

A 93 year old woman I met while receiving chemo is rolled into the reception area in her wheelchair.  She wears her usual beaming smile.  She has been coming here so long she knows all the staff by name:  receptionists, phlebotomists, interns, doctors.  They all beam back at her, loving her spirit - as I do - to fight breast cancer for the fourth time at 93 years old.  I pull her energy towards me, into me.  Pull, pull, pull.

The check-up goes well.  My voice is getting scratchier, which causes my oncologist's eyebrows to briefly furrow (scary - push, push away) but a quick scope of my throat reveals nothing unusual.  We set the date for my first set of CT scans, and I take a deep breath and vow not to allow myself to think about it until I get there.

He smiles at me, compliments me on my humor and strength. I tell him I'm a good actress.  He tells me he doesn't believe me.  I beam inside.  Pull, pull.

~~~

I haven't seen my kids much in the past two weeks, what with the trip to NYC and then Kentucky.  Monday they had play dates all day so I could clear my decks.  Yesterday was mostly used up with doctor's appointments, so as I drove home I couldn't wait to see them, to have an afternoon just for us.  Pull, pull.

Within twenty minutes of my arrival home, they were whiny, hot, tired, and didn't want to do anything.  The sitter said they were "perfectly behaved" and I grumbled inside about how they save the icky stuff for me.  Push, push.

Finally, I suggested mini-golf (LAST on my list of fun things to do) and their eyes lit up, they jumped up and down and hugged me. Pull, pull.

Twenty minutes into mini-golf they were arguing and calling each other names I didn't know they knew. Finn whacked his ball into the parking lot and it went down the sewer drain.  Greta had a headache.  I just wanted to do something fun together and it's already unraveling, I thought.  I daydreamed about being alone in a hotel room with a book, and then felt a twinge of mother guilt.  Push, push.

We ended up at the local ice cream shop, the kids full of creamy smiles and giggles.  Pull.

~~~~~

Several times this summer I found myself saying, kind of tongue-in-cheek, with another mother, "Is summer done yet?" as we did an exaggerated eye roll and laughed about how we're fantasizing about the big yellow school bus.  Push.

But then the next day I'm talking with a friend about how much I'm looking forward to the final few weeks of summer, where I don't have any trips, the kids don't have any camps or activities, just us and some wide-open days.  Pull.

~~~~

Yesterday I was hit with an idea for a post and I settled into my chair to write.  Within seconds they were at my side (when for the past half hour they had been playing quietly, and nicely, together) saying they are bored.  Is it the sound of my keyboard?  Do they have some sixth sense that knows when my Muse (such as she is) shows up?  PUSH.

I raised my fingers from the keyboard, reluctantly, turned and asked them what they wanted to do. They blinked at me ... blink, blink... and said "We dunno".  I ignored (mostly) the flash of irritation and suggested a walk.  They jumped up and down and said "HOORAY" and I felt like mother of the year.  PULL.

Last night, I snuggled in with them and read books, gave back scratches.  Thoughts of the hotel room, alone with  a book, were far, far away.  They nestled into me, smelling of summer; a sour/sweet kid scent.  My mind flashed to the 7th floor cancer center, of the 93 year old woman with a big smile on her face, of the man wrapped in bandages and speaking through a hole in his throat, of the small, bald child holding her mother's hand, and I gave thanks, from the deepest part of me, that I'm here. Now.

PULL.

~~~~~~

**This post was inspired by my friend Heather's post today, called (hopefully).   It's awesome. Go read it. 

A Little Something

It's a gorgeous, sunshine-y  day; I've got the windows rolled down and the radio turned up, and I'm singing along to U2's Beautiful Day at the top of my lungs.  I'm heading into Boston for two doctors appointments:  a routine check-up with my head and neck surgeon and then on to my oncologist to get the feeding tube out.  Finally. I'm thrilled about this milestone and my spirits are soaring.

I even mange to eat a bacon, egg and cheese sandwich on an English muffin on the way in.

Life is good.

For once, the long wait at the head and neck surgeon's office doesn't bother me, because I'm not anxious, not waiting for test results, not thinking about anything except being tube-free in approximately two hours.

Finally, he comes in, asks me the usual questions and then starts poking around in my mouth.

"Has there been a spot that has been bothering you in your throat?" he asks. "More than usual?"

I think for a bit, and reply "well, there is this one spot on the left that has always hurt more than the rest of my mouth.  But I wouldn't say it's worse.  It's not better, either.  I've gotten kind of used to it, I guess."

His eyebrows knit together and he gets out his ultra-bright light, magnifying glasses and the scope.  My stomach does a little flip-flop.

"Hmmmm," he says, unhelpfully.

Then he looks at it some more, calls another doctor in to look at it, and by now I'm shaking and sweating; trying to make eye contact with him over my stretched-wide-open mouth is hard.

Finally, he sits down next to me, and exhales a little sigh that I've come to dread.

"I'd like to biopsy that," he says, shaking his head slowly.  "It's probably nothing, but I want to be sure.   We have to put you under for that, briefly, so you'll need to schedule a ride, but it's a day procedure.  You can't get the feeding tube out today, I'm afraid.  In case we do find, you know, something, you'll still be needing that tube."

I gape at him in a stunned silence.  This was not part of today's plan.  Today he was supposed to tell me how awesome my scar looks, give me a fatherly pat on the back and send me on my way to get the tube out.  Now we're talking about somethings?

A nurse comes in to give me a pre-procedure check-up and blood work, and they tell me someone will call to schedule the biopsy shortly.  I beg him to make it as quick as possible, because the waiting is hard for me.  

My voice sounds very far away and business-like to me; there is no note of the hysteria I feel welling up inside.

I make it to my car before I burst into terrified tears.


This is what cancer does to you; it never goes completely away, even if you remain in remission for the rest of your days.  There will always be tests, knitted brows, scans and waiting.  Always.

I clench my fists and shake my head back and forth and sob and sob.  I know I need to accept this, surrender to it, but for now I'm angry.  I'm pissed.  And I'm really scared.  What if they find cancer? What then?  I can't do it anymore, I just can't.

After ten minutes or so my sobbing slows to hiccuping sniffles, and I take a deep breath and start my car.  On the ride home I stare at my fellow drivers, wonder what they're thinking about.  Dinner? A big meeting the next day?  Someone honks and gives me the finger because I'm driving too slowly, lost in thought.  I gape at him - you think that's important? Being late?

~~~~~

When the kids get off the bus and pile through the door a few hours later, backpacks, papers and shoes flying in all directions and chattering away about their day, I feel that old urge to run and  hide.  Don't love me, I think.  I have a something.  I may always have somethings. I'm damaged goods.

"Hey Ellie, do you know what?" (that's Finn's latest thing, calling me Ellie).   He runs up and throws his arms around my legs.  "You're awesome and I love you!!'

My heart sinks and tears come to my eyes as I say, in what I hope is a convincing cheerful voice, "You know what, Finn? You're awesome and I love you, too!"  I manage a smile, listening to Greta going on about her day.

This is my new normal.  I can fight it, or I can accept it.  Those are my only two choices. I know which way is easier, more peaceful, but man sometimes it's hard to accept something you desperately don't want to be true.

"Oh, Momma!!!" Greta exclaims.  "Let's see your tummy!  You got the tube out today!!!"

I give her a small smile and explain that I didn't get it out because they are still checking something in my neck and I may still need it if they have to do more procedures.

Her face falls.  "Is that bad?  That's bad, isn't it? How bad is it?"

"It's not bad or good or anything, yet.  They are just going to do some tests and then we'll see what the next steps are.  I'm trying to tell my brain not to think about it until I know more, because worrying doesn't get me anywhere."  I pray I sound convincing.

"Just like when I worry about Spelling Challenge at school?  You always tell me to tell my brain not to worry about how I did until I get the test back.  That worry is just a waste of time."

"Yes," I smile.  "Just like that."  

 I slip upstairs to my room and get on my knees. Take it, please, I pray.  Can you carry this for me for a while?  Because I can't.  I whisper this over and over until I feel a little lighter.

I make my way downstairs to fix a snack for the kids.  My hands still feel a little shaky, but I feel better.  More present. More free. Less angry. Almost accepting.  Almost.  I'm getting there.

What It's Like To Be A Mother With Cancer

Having cancer has changed just about everything about what it means to me to be a Mom.

There are the more obvious, expected changes of knee dropping gratitude that I get to have these small people in my life.  When the definition of 'forever' suddenly changes on you, and you realize you may not have all the time that you thought you'd have, gratitude for what I do have is more powerful, more meaningful, than it ever was.

I find myself  watching them play, overcome with awe and their mere existence.  How is it possible that they are even here?

Before cancer I would have moments like that, but they were fleeting and they weren't felt all the way deep down in the core of me.  And the moments of annoyance, irritation or frustration far outweighed the moments of awe.  I mean far outweighed them.

I can only think of one time in the past two months where I got really angry, and it was because Finn had dumped toothpaste all over Greta right before bedtime.  Getting angry in that circumstance is good parenting.  I used to get frustrated if they didn't move fast enough to get in the car, if they made a mess while they drew, if they bickered over some imaginary game they were playing together.  Basically, I was a Mom who was 'short' most of the time, now that I can look back at it objectively.  Having to fill a long Sunday with no plans was a chore; I would lie in bed with a pit in my stomach and think, how am I going to get from one end of this day to the other?   Now, that same Sunday is a gift.  Pure and simple.

I am also more of an absent Mom.  Maybe that is why it's easier for me to have patience when we are together, or at least part of why.  I was determined that my kids wouldn't have to endure a sick, sleeping Mom more than they absolutely had to.  It brought back too many horrible flashbacks of a sick Mom who slept all the time because she was hungover.  I didn't want my kids to go through that again.

I'm lucky to have help; my Mom comes almost every day, and we have a fabulous sitter who shows up after school everyday around 3:30pm to get the kids off the bus, get their homework started, play with them when they are done.   I am upstairs napping every day from 3:30 to about 5pm.  I need a big morning nap, too, from about 9am to 11am.  My body is so slow to recover from the ravages of chemotherapy and radiation (although no slower than most, I'm told this fatigue is normal) that I need this much sleep during the day - plus a full ten hours at night - for me to function.

This means I spend a lot of time upstairs listening to my kids play with other people - with my Mom, the sitter, Steve.  I lie in bed and hear their giggles as they tickle each other, their shouts of triumph when they figure out a homework problem, their smack talk as they play their favorite game - Stratego - all without me.  Nowadays when they need something, they are more apt to call for Dad, or Mimi (my Mom) than me, even if I'm sitting right in front of them.

I try to make sure I sit around the table with them every night for dinner, even though I can't eat, so I can hear about their day; much of which transpired right beneath me as I slept.  They babble on about doing things I used to do with them.  Every now and then Finn will thoughtfully cock his head to the side and say, "Don't worry, Momma. You can play wif us again when you're done wif the cancer."

The thing that amazes me the most is that I'm not resentful or angry that I can't be with them more.   I think it has been good for all of us to have me not be the focal point of everything.  A lot of my previous anger and resentment came from having to be in the middle of everything, all the time ... from being the Keeper of All Knowledge, whether it was where the socks and shoes are, to where the dentist's office is - all this information was packed into my head, alone.

Now Steve can do all the things I used to do.  And more.

The kids are more autonomous without me running around behind them all the time, pretending to let them do everything on their own but basically leaping in every time they didn't do something fast enough, or to my liking.  They are much more independent, and because of this their self-confidence has never been higher.

The old me (or at least my perception of the old me) would have had a hard time letting go, I think.  I had a love/hate relationship with being the center of it all.  It gave me a sense of being needed, for sure, but that was purely for me, really.  It held the kids - and Steve - back, because they could never do anything as well as I could, or at least that is how I made them feel with my constant corrections, or jumping in and doing it myself.

At the end of the day, when the kids plop on my bed and we read stories and exchange back scratches, I am moved almost to tears (and sometimes all the way to tears) at how lucky I am, how blessed we are.   I do have moments when I wish I could be more present for them, but I know my job now is to heal.  I can't do it all; I never could.

Being sick has taught me to stop trying to be everything to everyone, to do it all.  My little family is far more capable than I ever gave them credit for.

In the darker moments I'm glad for this, because - God forbid - what if they have to learn to do it all without me?   I expect to fully recover from cancer; I hope and pray everyday that I do.  But it's such an odd thing to sit and watch Finn - his little face screwed up with concentration - put his shoe on all by himself and think: good job, kid. There's one less thing you need me for.

I can't help it; that's where my mind goes.  I'm able to move past the darker thoughts, eventually, but sometimes when I'm lying up in my bed, trying to nap, all I think is "I have cancer.  I have CANCER."

That's part of my reality, too, one that I may never fully adjust to.  But I'm trying.