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On Belonging, Friendship and Surviving Renae’s Hikes

March 25, 2015


I attended a women’s retreat this past weekend.

It’s a retreat I’ve attended many times before. I’ve helped plan these retreats, I’ve MC’d these retreats. The location was familiar – a simple, beautiful space deep in our coastal hills. Miles from nowhere and perfect. I’ve enjoyed these retreats – always. But this time…this was different.

A whole new angle. A fresh perspective. An entirely new point of view.

I’m not going to die young. I’m not about to hit my expiration date. I’m not going to bring the same suffering on my family that my mother – inadvertently and unwillingly – brought upon hers.

In the past, when I have prepared for a weekend women’s retreat, I carefully followed The Rules. You know The Rules, right? So important, The Rules.

Here are The Rules:

  1. Go shopping beforehand. Buy something new and cute and springy. Being well-dressed will make you look happy and in control.
  2. Recruit close friends. Do not attend events without Security Blankets, i.e. friends who know your crappy baggage and like you anyway. Because, no one else will.
  3. Smile. Never let The Others see you unhappy. They wouldn’t like you.
  4. Choose your seat carefully. Surround yourself with Security Blankets so you are not at risk of being judged. Never sit with anyone else. They wouldn’t like you.
  5. Limit meaningful conversation. They aren’t dealing with hard stuff like you are. You are alone in your struggles and they wouldn’t understand, anyway.

News flash: those rules are wrong. Aren’t you shocked?! What a revelation.

I also realized that I’ve had a chip on my shoulder for decades. I’ve actuallyresented other women who are able to attend these retreats with their mothers. I’ve been mad at them for having that blessing and privilege. I didn’t even realize it was there until it was gone. Funny how that works…

I’ve also felt the teensiest bit resentful (okay, it wasn’t teeny) that everyone else in the room was going to live a marvelous and wonderful life, while mine was foreshadowed in mental illness and suffering. Because clearly, my Crappy Baggage is bigger and heavier and more awful than anyone else’s. (But we don’t talk about that…see Rule #5.)

This past weekend, I followed a new set of rules. Once again, I didn’t even realize I had rules until I stopped following them.

  • Shove yoga pants and favorite slippers into a suitcase. Throw in a pair of rubber flip flops as a little something extra. Wear the same pair of jeans all three days.
  • Go alone. (None of my closest friends were free that weekend. I went anyway.)
  • Sit with someone new at every session and meal.
  • Talk about The Hard Stuff when and where appropriate. Be vulnerable. Be honest. Cry as needed. Smile – the real one – often. Laugh.

Here’s what I discovered:

  • We’ve all got Crappy Baggage. We’re just carrying it in different shaped suitcases.
  • We’ve all got issues with food and body image. All of us.
  • I can survive Renae’s hike. (Inside joke: we call these annual events “Death Marches” but with great love and respect. She’s a monster with hills. She should be a trainer.)
  • Sweating and panting alongside other women breaks down any barriers that might still be lingering.

I came home from the weekend with a whole posse of new friends. But more profoundly, I found myself the entire weekend…in the middle of things. No longer on the outside, looking in. I…belonged.


Look at that! I’m in the MIDDLE!

Sort of like grace is friendship — not something you earn, but something you receive.

When I share my hurt and broken places, it gives the gal across from me the permission to share hers. I can’t tell you how many lovely conversations I had with women who were total strangers moments before. We shared our stories. We shared our broken places. We celebrated with one another how we’ve survived, and thrived, and triumphed.

I am convinced that the shortest distance between strangers and friends is a shared story about our broken places.

-Lisa-Jo Baker

Another woman there said this: “I see God better, I feel God better, in community.”

So true! When we allow ourselves that intimacy and vulnerability, we are able to light the way for one another.

The cracks are how the light gets through.

Fear, hurt, disappointment and suffering….they thrive on darkness and isolation. Every time we bring them out into the open, those wounds heal over a little bit.

I went years without saying the words “Huntington’s Disease.” The Great Unsaid, the family curse. The fear grew and grew, and swallowed up joy and friendship and love. I think back now and wonder…how much did I lose to that fear? How many women could have benefitted from my story, but I was too afraid to speak?

When was the last time you took a risk and told your story?

When has someone else’s story empowered you or given you the courage to share yours?


Click to Tweet: Fear and hurt thrive on darkness and isolation. Bring them out into the open, and those wounds heal over a little bit. #daretoshine

Click to Tweet: True friendship and connection are like grace – not something you earn, but something you receive. #daretoshine



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Friday FAQ: Life After Huntington’s Disease

March 6, 2015

I’ve enjoyed so many lovely well-wishes and hugs from friends old and new, far and near, and with each conversation, I try to put it all into words. In case you were one of the ones to ask, and if my answer was feeble…this is for you. I do better in writing at times like this. I think better with my fingers.

Who did you tell your news to first?

My dad. I did not share with him that I had been going through the genetic screening process, so the first he knew of it was the morning I received my results. He and my step-mom were on vacation in Hawaii, and we had to wait a bit because of the time change.

Gabe was with me at the final appointment. Afterwards, we drove into Los Gatos for brunch. It was a beautiful spring day, and while we were on the way there, we texted my dad a photo of my new tattoo and waited.


Shortly, he texted back: “Is that permanent?!”

Giggling, we then sent him a photograph of the lab results, and waited.

The phone rang less than 30 seconds later, and I was able to cry with him over the phone. If you’ve ever met my dad, you know –  crying isn’t something he does very often. It was beautiful to share that moment, fully joyful, fully relieved, fully open to all the emotions that came with it.

How does it feel to know you don’t have it/no longer have that hanging over you?

Go put on a pair of really dark sunglasses. Wait five minutes. Then, go outside and walk around a bit in the sun.

Now, take off the sunglasses. It’s just like that.

I’m still squinting at the brightness. I had no idea how dark my world had become with this looming overhead, filtering out the light, warmth, and life. It is shocking how big and wonderful my world now feels.

Even now, three weeks later, I still forget that I don’t have to worry anymore. I’ll kiss the boys while they are sleeping, curled into their blankets in a tangle of feet and elbows, and the script still plays, unbidden: You won’t get to do this much longer.

And now, a new script cuts in: Oh, yes I will!

Since the results were negative, do you regret getting the tattoo?

Not even the teensiest bit. I love it. (I confess I also love the reaction I get – I’m not The Type to get inked, and that’s been fun. It’s novel to rebel at the age of 41.)

The message – that battle cry – still applies. I have no guarantee against suffering, loss, illness or death. I simply have one less option. I’m just as at risk for cancer as the next girl. And now that the possibility of a long life is actually there, I could easily become completely obsessed and paranoid about the rest of my health.

But, life isn’t something we have any control over, and it can’t be held too closely. I still choose to laugh without fear of the future. But I might try to be better about eating my greens….and calcium! Longevity runs in my family – my great-grandmother died at 97 and my grandfather is still kicking at 91. I’m shooting for 100.

Have you done anything new or different now that you know this isn’t in your future?

As my first act of living unhindered, I began taking guitar lessons along with my seven year old. I know nothing. It’s splendid to begin a new skill and think I might master it in five or 10 years, and still be around to enjoy myself. Or play back-up to my little virtuoso.

I’m also back to working on a book manuscript. It’s the story of a girl who found herself trapped in darkness after the loss of her mother, and how she came to realize that living in the light is really just allowing the broken bits to show. The cracks are how the light gets through. The light – it was there all along, on the inside.

I just didn’t know how the book would end. Now I do. 

I’m crying a lot – bearing in mind that I was also numbed out on Zoloft for the duration, and I would not have been able to survive that 9 months without an ulcer had I not been.

It is nice to feel things again, even though I’m feeling everything rather intensely. The first week I was off the meds, I had a meltdown over not being able to have hamburgers for dinner. My husband is a saint. A saint, I tell you. Thankfully, that intensity has tempered a bit.

Even still, little things get me teary. Facebook videos and dogs. Praying with my children, thinking about my mom, listening to the radio…a backwards sort of grieving. I’ve already gone through the other stages of acceptance, anger, and blame. I’m at the beginning now, where all that pain I’ve carried around for decades burbles up to the surface, and I just can’t hold it back.  It leaks out, like it or not.

Like I said before –

funny thing, grief.

completely unpredictable.

totally untamable.

entirely exhausting.

yet, mandatory.


Read the back story:

On Death, Joy, and Tattoos

The Waiting: On Fear, Friendship, and Snorkeling

What Not to Pray (Unless You Really Mean It)

My Story: Why I Write


The conversation continues!  For more insights and resources about living a shiny, abundant and beautiful life, join me over on InstagramPinterest, or Facebook

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The Waiting: On Fear, Friendship, and Snorkeling

February 26, 2015

The first time I ever went snorkeling as a child, we were off the beach of Avalon, Catalina Island.

The water was cold, but for these weird warm currents that flowed along the shoreline. I was convinced it was the breath of a large shark preparing to eat me.

Oddly, this did not put me off the sport, and I’ve spent many dreamy hours floating face down, observing above, apart from, the world just under the surface. Maui. Hours just drifting with the currents, barely moving as I simply watched the world swirling below.

Every so often, I’d raise my head to get my bearings along the shoreline. Every time, I’d find myself in a completely different place than I thought I was in.


Snorkeling – such a goofy name for such a peaceful activity. A wonderland of life teeming beneath the seemingly solid surface of the sea. Sound is muted. Breathing is a calculated, in and out effort through a plastic tube. It feels unnatural, awkward.

Sensory deprivation.

Forced breathing.

Observing, not participating.

And every time you raise your head, you find that the world has moved on without you and you’re not where you thought you were.

It’s been like that, the last nine months.

A suspended animation of life. I floated about my days, concentrating on just doing the most basic of tasks. Work, mothering, make dinner, try to sleep. Breathe in. Breathe out. Repeat.

Sleeping was the worst. I haven’t slept well in 12 years. These past months make the other 11 years look like a big long party in Slumbertown.

One of the hardest things about living under the shadow of Huntington’s is the fear of being erased.

I already know how hard it was to push aside the final year’s of my mother’s life and focus only on the good years.

What if they can’t do it for me? What if who I am, all that I am, have accomplished, all that I’ve grown and become…what if it is all simply erased? Lost in the mire of mental illness and dementia.

Karen, my mom, was never able to talk about her illness. It was the Great Unsaid. The elephant in the room we had to ignore. She was so afraid that if she acknowledged it, it would be true.

It was already true, just not a truth she could ever accept. Her fear of HD was simply too great for her ever to turn and face her illness head on.

I promised myself — I would be different.

When I began the process of genetic counseling, I sent a quick plea to a small tribe of friends. A posse of support, some local, some going back to college days. Some who had lost a parent already, and some who I knew would just really, really pray.

They provided me the buoyancy to survive the last 10 weeks of waiting. Small notes of encouragement. A text.

Twelve people who knew what I was doing, what was coming, and twelve people I would have to tell when the time came. It wouldn’t be a secret.

My little posse of friends kept me afloat when I could have easily drowned under the weight of waiting, anticipation and fear.

Twelve people were enough to survive those nine months of abstract waiting.

The shame, I come by that the old-fashioned way.

I inherited it from my mother. She blamed HD for every hurtful, heedless thing her mother ever did. The thing is…there was a lot more to my grandmother than Huntington’s Disease. But it worked as an effective scapegoat for my mother, to blame all that bad behavior on an illness her mother had no control over.

The flaw in the logic comes when she has to face the disease herself. If she believed that HD was the source of all horror in her own childhood, she then would have to accept that HD was wreaking the same sort of havoc on our family. She couldn’t accept that burden, she couldn’t bear the shame.

So we bore it in silence, the Great Unsaid, the shame and fear unspoken. We, father, my brother and I, survived those years, but barely.

Fear grows like cancer in the darkness. It is only when it’s brought out into the light that fear will shiver a bit and shrink. Still big, still scary, but smaller and more manageable somehow.

I handed my fear over to 12 people I could trust. Twenty-four extra arms to carry the load, share the burden. I know they felt this nearly as much as I did. I know they ached with the uncertainty and the what-ifs. I know a few of them even laid awake at night, companions with me in the darkness, miles apart, equally praying and pleading.

Please, God. Let this time be different.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us…

Ephesians 3:20 NIV

Read the back story:

On Death, Joy, and Tattoos

What Not to Pray (Unless You Really Mean It)

My Story: Why I Write


The conversation continues!  For more insights and resources about living a shiny, abundant and beautiful life, join me over on InstagramPinterest, or Facebook

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What Not to Pray (Unless You Really Mean It)

February 18, 2015

What Not to Pray

At one point I wished it was cancer. I’d rather die of cancer than Huntington’s Disease.

I did pretty well up until I turned 40, and suddenly the time bomb clicked to life, ticking down the seconds of my life.

Every time I choked on a glass of water, or my foot twitched in bed, I knew. It’s Coming.

My handwriting isn’t what it once was. Someone even commented upon it “You don’t write as neatly as I thought you would” and I knew. My fine-motor was already beginning to degrade. It’s Coming.

I was certain the results would be positive. Certain to my core. Every sermon, scripture and song on the radio was teeing up the shot – this is your life, girl. Either get busy living or get busy dying, but your days are numbered.

It wasn’t a life I wanted, not at all, but do we ever have a choice in the matter? My mother didn’t have a choice. HD was certainly not in her plan. Why should I be any different?

Last summer, Oceans was playing everywhere. I listened to that song over and over. Take me deeper than my soul could ever wander, let my faith become stronger….

Warning: Don’t say it if you don’t mean it. Really, don’t.

I had no idea the waters I was wading into, or just how deep I’d go. He drew me in until I had no other way back but through Him.

I have never imagined my life beyond the age of 45. Everything I’ve ever wanted to accomplish, it all had to be done in the next four years, soon to be three.

I was 21 when my mother started losing her mind. If my results were positive, my youngest would only be 10. I had two decades of my mother to remember, and yet it’s still hard to shut out the bad years and remember the good. The bad years were Just. So Bad.

How are my boys ever going to remember that I sang them Siúil A Rún every night at bedtime? How are they going to remember the piggy-back rides when they were toddlers and how I once allowed them to dip their pizza in chocolate sauce?

New Year’s Day was an ugly day. I had to get off of social media, away from the the myriad of “One Word” posts.

Prosper! Aspire! Choose! Focus!

Me? How about LIFE. I’d just like to live, thankyouverymuch. There were a lot of tears that day, and then a migraine. They have become close friends in my life, tears and migraines. Great buddies. Inseparable.

I woke up on January 2nd and decided that this is not how I want to live the next six weeks. That’s not living, that’s dying. Already. And I’m not dying. Not yet, anyway.

I’d just like to see my kids grow up. To know that I’m not going to terrorize them with the insanity that is coming in the next few years. To plan for their graduation parties, to be a part of their weddings. To spoil my grandchildren.

I’d like to take a vacation and not wonder if it’s the last time we’ll ever visit this place. I’d like to hold my seven-year-old at bedtime, snuggly-sleepy warm in my arms, and not wonder if he’ll remember this moment, or will all of the Bad Stuff yet to come scrub it from his memory.

I’ll love you forever, I’ll like you for always, as long as I’m living, my baby you’ll be….

Heck, I’d like to plan for retirement.

Living with someone with HD is like living with an alcoholic. Only,  it’s not a result of their own choices, it’s not their fault at all. 

You’re not supposed to be mad at someone who is ill, but yet they are angry and cruel and manipulative. How would my young sons survive, when I barely did and I was an adult when I went through all that?

What about the photos? I’m the one who is always taking the pictures, how will they know what I looked like before my face begins to twist in spasm and tics? How will they remember that I used to ride a bike, run, hike, when I’m strapped into a wheelchair so that when I flail with chorea, I don’t fling myself right out of the chair?

There was a calm in the days leading up to my results. Resignation, if not acceptance.

I had hope that they would be negative, but I did not believe in that hope. Positive results, that I had indeed inherited the Huntington’s gene, were far easier to believe in.

With a battle cry carved into my ankle, a command to myself, I dressed carefully the day of my final appointment.

I chose carefully. The Right Shoes, with which to do the Hard Things.

It is perhaps shallow, and a bit frivolous, to think that shoes imbue anything beyond a bit of trifling pleasure.

But to me, that Hard Day, they were a bit like armor. A shoring up of resolve. A summoning of courage.

wearing red

She dresses in fine linen and purple gowns.


She is clothed with strength and dignity,
    and she laughs without fear of the future.

Proverbs 31:22, 25 (NLT)

There were three doctors in the room, a battalion of caregivers, ready to console and counsel. For them, this was routine. They would sleep tonight regardless of the answer I was about to receive. I briefly wondered if anyone in my place ever threw up on their shoes. Searching their faces for some clue; they were all somber, a studied mask of empathy upon their faces.

I was barely seated when quickly, the geneticist turned to me and said.

“It’s good news.”

I looked at him, hearing the words but not grasping the meaning. How could my testing positive be good news?!

“You do not have the Huntington’s gene.”


Read the backstory:

On Death, Joy, and Tattoos

My Story: Why I Write

That Which Is Good


The conversation continues!  For more insights and resources about living a shiny, abundant and beautiful life, join me over on InstagramPinterest, or Facebook

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On Death, Joy and Tattoos (And Where I’ve Been)

February 16, 2015

For the last week I’ve been trying to figure out how to begin this post. I haven’t been writing much for the last nine months, and for very good reason.

(No, not THAT kind of reason.)

Nine months is ironic, though. It has been a time of waiting, anxiety, sleeplessness, and more physical illness than I’ve had to endure in years. Quite a lot like pregnancy, in fact. But without the bonus at the end.

You may recall that my mother died of Huntington’s Disease – a genetic illness that strikes down the body as well as the mind. In 13  years she went from a vibrant, loving, generous woman in her mid-forties to a living carcass of what once was. Mental illness, dementia, and physical disability. She was the youngest patient of her condition by forty years when we checked her into the convalescent hospital. She was dead of heart failure a year later.

Now, let me repeat a couple of things:

  • Genetic illness
  • Mid-forties

Huntington’s Disease (HD) is hereditary. It is a genetic mutation that occurs 50% of the time in the children of parents who carry the mutation. My mother inherited it from her mother, and my grandmother inherited it from her father, who inherited it from his mother, etc.

For the last thirty years or so – since my grandmother became ill from HD and I knew what it was and where it came from – I assumed that I would inherit it as well. Why wouldn’t I? I’ve inherited just about every other trait from my mother save her gentle and easy nature (I get the feisty from my Dad).

It was just before I turned 41 that I realized I needed to know for certain. My mother was showing signs of mental illness when I was a junior in college. She was 45.

As such, I’ve spent the last nine months gearing up for the genetic screen that would tell me whether or not I had 3-5 good years left in my life, or 50.

I stopped writing, I stopped accepting speaking engagements. I went to work, I mothered the boys, and I waited. That’s pretty much it. I will write about it all, someday and soon, but during that period, the words would simply not form.

I think they were too tied up in fear. The emotions too raw. What would you do if you had but 5 years left of living?? I tried to cherish the moments that I could (let’s be honest, it is impossible, even in the face of imminent death, to cherish EVERY MOMENT as a mother. I have boys, you know.)

Genetic screening is not a speedy process. It takes months, required counseling, over 900 questions about your personality and emotional state, and whether or not you have ever been tempted to steal your best-friend’s sunglasses, until finally they determine you are sturdy enough to bear the news.

The day before I went in to receive my results, I did something I had wanted to do for a long time. Something other than sitting around waiting for my future to be determined. Something that would declare how I would handle the results, positive or negative. Call me foolish, call me heedless, call me cra cra…whatever.

I went out an got a tattoo. *gasp*

I’m nearly 42 years old. At what point am I going to grow up and regret it? This time of my life, these past nine months, they will NEVER not be a big deal. They will ALWAYS be a big deal. And I wanted  a permanent declaration of how I would deal.

In four generations I had only seen devastation as a result of HD.

My mother lived in absolute horror of the disease. I lived in horror of the disease. But, in the weeks leading up to my results, I came to a decision. I serve a big God. He tells me that all things are possible for the two of us together. Thus, I chose to believe in a positive outcome regardless of my results. Positive, or negative, I will choose joy. I don’t know how, I really don’t. But I choose joy, and I choose to believe that He has the power to make that happen.

So the night before my results, I had this permanently engraved upon my ankle, so that I could never, never forget. It’s taken from a translation of Proverbs 31:25b, and the design is mine.

Just like Shadrach, Meshach and Abednego, I was finally ready to face the furnace without fear. I wrote this a few years back:

There is some Bad Stuff in my past. Hurtful, horrible things that I have had to cope with, deal with, overcome.

I’m fairly certain there is Bad Stuff in my future. Why? Because Bad Stuff happens to nice girls. It also happens to mean girls and tall girls and short girls and those who deserve it and those who don’t. We live in a broken world, but it’s not our home. It’s not our home. And this isn’t all there is.

How do I know I’m going to survive when the Bad Stuff happens? In the words of Freddie, a wonderful dame of wisdom in my neighborhood; Freddie, a widow, 2x cancer survivor and surviving her own son. “Because I’ve lived it, I’ve experienced it and I’ve survived it. There isn’t any magic potion that is going to get you through it all, but I’ve got my faith, and I’ve got God. That’s all there is to it.”

In the words of another wonderful warrior, “God is my Plan A. I have no Plan B.”

This post is officially too long. You’ll have to check back later for more on this journey (and photos). XO

Read the backstory:


My Story: Why I Write

That Which Is Good


The conversation continues!  For more insights and resources about living a shiny, abundant and beautiful life, join me over on InstagramPinterest, or Facebook

Like this post? Subscribe to receive future posts via email or a quarterly newsletter that positively glimmers with good stuff. 

Worth Repeating: Writing Extraordinary

December 29, 2014

Beautiful words that have caught my attention of late.



One of the best books I’ve read in a long time. This single quote is perfection:

His heart is too full, and no words to release it. I know what words do, he thinks. They let us feel less.

The Storied Life of A.J. Fikry, a novel by Gabrielle Zevin.

This article grabbed me from the very first sentence; I connected with every word.

“Dressing up was my mother’s way of taking control, and making sure that she felt her best going into a situation that, though she didn’t betray it at the time, left her shaken and scared.”

from Dressing Like My Mother, by Anna Nordberg

This quote reminds me of all those people in my life that believe that my writing is going to, someday, amount to something. Someday, I hope to believe in that, too.

“Sometimes the idea that somebody else might believe in you can be enough to tie you over until the day you yourself do.” – Hozier

Hozier: What I’m Thankful For by Andrew Hozier-Byrne

Lastly, this video made me laugh but the lyrics made me wistful.  Poetic truth.

Well, sing, sing at the top of your voice,
Love without fear in your heart.
Feel, feel like you still have a choice
If we all light up we can scare away the dark

Passenger, Scare Away the Dark

Shine on, friends.

On Becoming Obsolete

December 15, 2014


It has come to pass that I am no longer capable of using my own television.

I fondly remember the days of  VHF and UHF and bunny-eared antennas, snow-covered episodes of Sesame Street that would never quite come into focus. My brother yelling at me to change the channel from the across the room….

Sit Ubu, sit! Good dog.

Then came cable and remote control. One remote, not so bad.

Then TiVo, which, I’m told, is now obsolete, but I still use the brand name
as a verb, as in “How do I TiVO “Say Yes to the Dress”?! I managed to learn the TiVo machine-thingy relatively well. I could figure my way around that one white remote control, but by this time, the DVD player had it’s own, so we’re up to two.

Then I married Gabe, and things like pre-amps and woofers came into my life. TiVo was eaten by the DVR. We begat ourselves a Wii, and that beastly machine never does what I want it to, whether I’m bowling or trying to find movies on Netflix. I stand, humiliated, waving a white baton while a finger skitters across the screen as if to point out my own incompetence.

The DVD player was eaten by a Blu-Ray. Now we have something called Apple TV and I’m not certain what exactly it does, nor which of the six remotes on the coffee table make it go.

As such, I am left with only one alternative. It goes a bit like this:

“Please come turn the TV on for mommy. I want to watch something on Netflix.”


“Can you find me a Christmas movie on TiVo? I think I recorded one.”(They roll their eyes, but have stopped correcting me.)

Shamefully, I’ve gone so far as to rouse them from bed to come and adjust the volume. You push one wrong button…

On one hand, it’s a bit humiliating to have fallen behind this technological freight train at the still-fairly-young age of 41. I have a lot more falling behind to do in my lifetime. As I understand it, there’s this thing called an X-Box that may soon enter our lives…

On the other hand, it’s a bit like having servants. “Make it go!” I say, a teensy bit querulous, as I pass them the basket of remotes, and they comply happily, because they are boys and pushing buttons and aiming things is the pinnacle of all joy.

Frankly, I can deal with the shame.

Now, come, my little minions, Mommy wants to watch “White Christmas.”


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