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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.

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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

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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.

and…

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

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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:

Grief

My Story: Why I Write

That Which Is Good

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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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Worth Repeating: Writing Extraordinary

December 29, 2014

Beautiful words that have caught my attention of late.

 

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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

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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.”

Or

“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.”

A Momentous Day: His First Phone

October 23, 2014

So this happened….we are giving our 11-year-old a phone.

Not a fancy, brand-new iPhone, mind you.

It’s a pretty old phone, actually. A Blackberry. But it’s still a phone. His first phone.

A starter phone, you might say. Less likely to be stolen. Limited viewing capabilities when it comes to internet usage. No games.

In doing so, and before we even told him, we had him read and sign the following contract. This was something I wrote a few years aback, adapted from another contract written by Janell Hofmann.

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Telephone and Internet Use Contract

  1. We will always know your passwords. This technology is on loan to you; the hardware it’s on belongs to us, not you.
  2. Everything is permanent. Everything. You can never truly “delete” anything you text, post, or email. Don’t put anything out there that might embarrass you when you are 40.
  3. Talk to your friends, don’t just text. Communicating in person is a life skill you need to learn.
  4. Do not use the internet or social media as a means of hurting other people. It is not a shield or a weapon. It is still you saying that to them—if you wouldn’t say it to their face, don’t text, post, or email it.
  5. Do not text, email, post or say anything that you don’t want to read about when you are a senator someday. Remember, everything is permanent. Everything.
  6. Avoid looking at or browsing websites or materials that degrade other human beings. (This one will be discussed in further detail, in person, as appropriate to his age. We want to caution him without giving him an unnecessary curiosity.)
  7. Technology doesn’t own you. You don’t have to bring it with you everywhere. Have the freedom to leave it home every once in a while.
  8. You have access to the music of the entire world. Broaden your horizons. Listen to something new. Be different. Mozart is awesome. So are Sufjan Stevens and Matisyahu.
  9. Be present. Don’t live your life with your head down, or through the computer screen. Look out the windows, talk to the person next to you, be a part of our lives.
  10. Don’t spend all your spare time on MineCraft. Play games that make you think every once in a while.
  11. With the internet you have access to extraordinary amounts of knowledge. You also have access to extraordinary amounts of junk. Don’t believe everything you read online. If you’re not sure, ask us. We’ll show you how to find out what’s true and what’s not.
  12. Everything is permanent. Everything. Don’t ever email, text, or post something that will humiliate someone else, either today or when they are 40.
  13. iPads and Smart Phones are not allowed in your room. You are welcome to use them in any of the public areas of our home. You may listen to your iPod or read your Kindle in your room.
  14. Your phone will be checked in with mom or dad at 7pm each evening and left to charge overnight in the kitchen. No exceptions.
  15. Failure to comply with any of the above will result in loss of technology privileges for a period of time. We love you, we expect that you are going to make some mistakes. We’ll work through them, together.

You can download a copy of this same contract here, if you like.

 

His eyes about bugged out of his head as he realized what was going on.

His first reaction was fear – what if I lose it?

You will, we said. That’s why this is a starter phone.

What if I mess up and lose my privileges? he said.

You will, we said. It will be okay. We expect you to make mistakes. It’s a process, responsibility. We’re here to help you get there. 

I’ll let you know how it goes. I’m sort of bugged out myself.

What are your family rules for internet and smart-phone usage? In talking with others, I’ve already discovered a few things I left out! Stay tuned for an addendum…coming soon. 

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

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Phone Contract

50 Things

August 26, 2014

I wrote this over the summer…someone somewhere issued some kind of challenge – I don’t remember – but it was rather fun, so here you go.

I bet you didn’t know that…(or maybe you did. Did you?)

1.    My favorite color is orange.

2.    I love dogs, but really, I only love big dogs. Small dogs don’t count as dogs. If you can’t use them as a pillow, what’s the point? Or, if my cat can beat up your dog, that’s not a dog. That’s a wind-up toy.

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3.    I clean and organize when I’m stressed out.

4.    I used to struggle with anorexia. Anorexia often stems from a need to control your situation.

5.    For me, cleaning and organizing is sort of like “environmental anorexia.” It gives me a sense of control when things are out of control. So on a bad day, you’ll often find me cleaning the edge of the sink with a q-tip or organizing my underwear drawer into color order.

6.    I love to iron. Iron is bringing order from chaos. It is a lovely thing.

7.    I keep an iron and ironing board out at all times.

8.    I love to host parties. Dinner parties, BBQs, showers. I love to throw open the doors and fill the house up with people.

9.    I used to hate gardening. Now, I love it. I feel lost without it. A weekend is not a weekend if the yard-waste can is still empty by Sunday night.

10.   I am energized by feeling productive. Accomplishing tasks drives me forward.

11.  I might sometimes put things down on a checklist just for the satisfaction of immediately crossing them off.

12.  I have worn contacts since I was seven years old.

13.   I love California wines, all sorts, as long as they aren’t too sweet. Not big on dessert wines. Except port. Port in the winter, by a fire, is a lovely thing.

14.  I love to bake but I’m not a very good cook.

15.  I married a really good cook who likes to cook.

16.  I used to be ashamed that I’m not a very good cook.

17.  Then I woke up and realized that being married to a good cook who likes to cook is AWESOME.

18.  I conned my husband into learning how to make bread from scrtach.

19.  I gained ten pounds the year my husband learned to make bread.

20.  I like to bake cakes from scratch. Big layer cakes with homemade frosting. But my attention span is too short to be good at applying frosting beautifully, so I mainly go for haphazard swirls or ganache or drizzle.

21.  I make a really good maple cheesecake.

22. I have also perfected the World’s Most Awesome Chocolate Chip Cookie.

23. I don’t like the color pink. Coral is as close as I get.

24. Shoes make the outfit. But I still have plainy-old rubber flip flops…I’m not above flip flops.

25. I’m scared of birds.

26. Birds have evil-looking eyes. I think chickens secretly want to peck your eyes out.

27. I used to torture Daddy Long Leg spiders as a kid.

28.  I try to avoid handling raw meat. Ever. But I don’t mind eating meat.

29. I love sushi, in limited quantities, but it can’t be super cold. I have texture issues with cold and slimy.

30. I absolutely loathe custard and pudding. Aforementioned texture issues.

31. I never drink soda of any kind, except for Fresca, on occasion, in the summer.

32. I know how to tie a monkey fist sailor’s knot.

33. Both of my pinkies curve outward at the middle knuckle, just like my mother’s did.

34. I am a descendant of THE Johnnie Walker.

35. I think scotch tastes like dirt. My husband loves scotch. The more it smells and tastes like dirt, the more he likes it.

36. My preferred wine is chardonnay, as long as it’s nice and buttery.

37. You can never have too much cheese.

38. I think basil is one of God’s greatest gifts to the world. Second only to that is feta.

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Just a few of the gorgeous goodies from my garden…

39.  I am a foodie. I love food. I love new foods and fusion foods and funky combinations and flavors that are outside the box.

40. I used to turn up my nose at spicy food as a kid. My parents loved spicy food. I missed out on a lot of awesome food.

41. When I was pregnant the second time, I craved spicy food. I had terrible heartburn, but I ate it anyway.

42. When I was pregnant the first time, I craved salt to such an extent that I would eat it straight out of the container. No joke. French fries were simply a means to salt.

43.  My favorite flowers are Gerber daisies. They are just such happy flowers. They smile.

44. I love knowing the Latin names of all my plants. It makes me feel brainy. Agapanthus, Heuchera, Coreopsis, Camellia Japonica, Fatsia Japonica, Alyssum, Lobelia, etc.

45. I have 16 roses in my yard and I know the name of every one. Gertrude Jekyll, Graham Thomas, Pat Austin, Abraham Lincoln, Sharifa Asma… all weirdly wonderful and unique.

46. I am most self-conscious of my stomach.

47. I like my shoulders.

48.  I have had short-short hair since 1995.

49.  I have short hair because I am lazy.

50.  I do not color my hair. I did once. It was bad.

Your turn: Can you relate to any of my weirdness?

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

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