Dear Congress,

Hello.  I know we’ve sort of lost contact, you and I, for the past…46 years.   I never write, never call, never visit.  Sorry?  Or…you’re welcome.  Whatever the case, I’m here now and I have some things to say. You don’t know this about me, but I really like lists.  Because the Capitol is so well-ordered, I’m assuming you must like ‘em too, so here we go.

1)  Do you see this group of people? They are my country.

This is a bus full of wheel chairs and power scooters and each one is occupied by a wonderful, brave, brilliant person who probably will not be here two years.  Those are the facts.  ALS is relentless, merciless and no matter how strong these men and women were before the diagnosis, they will not be able to fight what’s coming without some help and a lot of money. That’s why we’re here.

2.  This is us:

John lost his stepdad to ALS.  Beth lost her father to ALS.  Aubrey lost a dear friend to ALS.  Carolyn lost her dad and Barb lost her sweet brother, Randy, to ALS.  All of us have been profoundly affected by a disease that gets very little attention.

None of us feel like crusaders, but we’re willing to do just about anything to see something change for people faced with the devastation of an ALS diagnosis.

3.  Mostly what we’re going to do, it turns out, is walk:

Please know, we don’t walk for ourselves.  Even if a cure was found today, it wouldn’t change the situations that we have faced or are facing.  In fact, all of us are committed to prioritizing our time and using it for those we love.  We think you’re awesome, Congress, but you’re not on our bucket list.  What IS on our list?  Finding a cure.  And finding a cure starts with funding a cure.  So…here we are.

4.  Because we know money is tight, we’re not asking for more.  We’re just asking that you won’t cut the ALS research budget like you did a few years ago.  Ten million dollars sounds like a lot, but it’s a drop in the bucket when you measure it against the desperate need for a cure.

We will meet with anyone.  Your awesome (and very young!) aides:

Or, if you happen to show up while we’re telling our story in the hall…then we’d love to talk to you (thanks, Congressman Walden!)

We represent those we love and the army of friends who stand with us as we walk the road through this difficult country.

We will wait:

And wait…

And we will tell our story over and over again, even though it’s hard every time and even though we are probably the eleventy billionth appointment in your day.  Still, we knock on your door and tell you the truth and ask for your help.
Because that’s how it’s done in this country.  We care for the helpless and we love those who are up against a fierce fight.

This is America.

And this is why you signed up.

Thank you for listening, for your compassion, for always giving us time and grace to be broken in a building that feels so “fixed.”

Thank you, most of all, for drafting 7.5 million dollars of the 10 million we asked for into the DOD budget the VERY next day!  What a fantastic and immediate result (don’t worry – we won’t expect that every time we show up.)

In closing, it was a difficult and divine day, much like America herself.  Thank you.

We are so grateful.

Yours for the land that we love,

Team Oregon

P.S.  Mad photo props to the amazing Barb Deeming.  All the good photos in this post are hers.

When Steve was diagnosed with ALS in February, 2011, we went to a restaurant on our way home, and through our tears, clinked our glasses to Life!  We declared that, while ALS is not from God, this sudden and unexpected move into a new community was certainly His plan for our lives and we decided that we would not go kicking and screaming, we would go loving and serving.

Because the disease is rare, our “country” isn’t very big.  We rarely run into people with ALS (we’ve once or twice asked people in wheel chairs if they have it – we stopped doing that because the look of horror on their faces just reminds us that no one wants to visit our country).   When we do meet someone living in the land of Lou Gehrig, it’s like finding a fellow sojourner on a long journey and you feel not-so-alone.

When we arrived at the ALS conference last week, I imagine it was like someone from Finland stumbling into a hotel ballroom in Arizona and finding a thousand people from Helsinki there.  Everyone speaks the language.  They understand the street names from back home.  They know the same food and they have lived through the up’s and down’s of a culture that the rest of Arizona couldn’t possibly understand.  That’s the best way I can explain our week: it was like finding your country, comfort and comrades…all in one space.

I arrived late because I had been speaking at a conference, and so I was almost immediately whisked off to a candlelight tribute rally.  This rally was attended by hundreds of PALS and FALS and it was very moving.  A woman shared the story of her brave husband who faced the disease with valor and grace.  She talked about how their marriage grew stronger as a result of the disease as did all of his relationships.  He slowed down and invested in people and his life really mattered.  A man shared of his grandmother  – a former dancer – who died of ALS years ago and he has given himself to the fight.  And a 13-year-old boy shared about losing his dad just a few months ago and I would tell you what he said but…it’s still just very deep and raw for me.  It was beautiful, though.

As we all stood together in solidarity for life and for a cure…and as we remembered those who were and are fighting this disease, our candles flickered hope.  Tears rolled, hugs spread through the crowd, a certain bittersweet loveliness permeated our hearts.  As I stood with my beloved in the middle of a busy city, by the glow of warm candlelight, I whispered to God, “Thank you for sending us to this country.  It’s brutal, but it’s beautiful.”

The next day, we attended lots of sessions led by seriously smart people that centered around ALS research.  One session was extremely hopeful as Dr. Brian Traynor showed the progress being made in labeling the genes involved in ALS.   Aside:  Dr. Traynor suspects a link to the Vikings in the 16th century and produced the following slide:

Vikings: like pirates, but cooler.

I’m astounded that people as smart as these doctors have any room in their brains for humor, but there it is.

After that session, was one on Clinical Research Trials.  This is where we ran into some dangerous, difficult terrain in our country.  A panel of researchers explained the breakthroughs on the horizon and the tests being conducted to verify the effectiveness of new treatments.  They spoke of possibilities and complications and the astronomical odds of making a treatment actually work.  I appreciated their candor and I know they are working so hard to eradicate this disease, but I have never felt despair rise so palpably in a room before.  A man took the mic and talked about a clinical trial he participated in and received some help from, but now he cannot get the medication because it’s not yet approved and his condition is rapidly declining.  He begged the doctors to find a way to make the treatment available.  A woman spoke of her son – still in his early 20′s – who cannot qualify for a trial of any kind.

It was at this point that a woman with ALS at a table behind us began to cry.  Not just cry, but sob…soul-deep, gut wrenching sobs that neither she nor her friends could contain any longer.  It was the desperate cry for help for which there were no adequate words.  It was the cry for deliverance from a land she never wanted to visit and now she knew she would probably die there.  The doctor tried to be heard over her weeping, as he carefully explained that we are far from knowing what we need to know but they are working as fast as they can.

I sat at my table and put my head in my hands as tears ran off my face and into my lap and this time I whispered to Jesus:  “I hate this country.  I love the people, but I hate every single thing about this country.”

 A long dinner with our team of superheroes – each of whom has lost someone dear to them to ALS, each one so familiar with the soil of our battleground – restored hope and rest to me.  We laughed and ate and carefully remembered everything promising that we had heard that day.  We planned our attack on Capitol Hill, where we would – with more passion than ever – ask our government to please help us in this fight.  I’m so thankful to Aubrey, Carolyn, Barb, John and Beth for helping me find solid ground again.

And you know who else I’m thankful to?

This guy:

I wish I could explain how he really is when no one is looking.  I wish I could show you how brave and strong and righteous he has been in this fight.  He is valiant.  He is so many things that I am not and while this disease attacks his muscles, he still carries me along pretty effortlessly.  I am thankful that I even get to know him…being loved by him so well for so long is a gift beyond telling.

So, I promise tomorrow I will turn this blog around.  Good things happened on Capitol Hill and I can’t wait to tell you about them.  But I wanted first to be very honest because I’m guessing you might also live in a land you didn’t choose.  You may have built a home in heartache or disappointment or struggle or pain and you are longing for a miracle of Exodus proportions.  I am longing too.  But I know He is enough.  I know that He also has a home in our grief and He doesn’t ever make us go alone.  He always reminds us that a better day – and a beautiful home – is coming.

Still traveling,

Bo

Well, it’s been awhile since an update on this little bloggy blog, but I tell you what:  the past month has been a spinning, swirling, swooshing storm of a schedule.  Three conferences, a big book deadline and now Washington DC for ALS Advocacy.  Have I ever mentioned how I love this city?  I do.  I love it with all my little heart.

We’re not actually to the “sight-seeing” part of our trip yet, but Steve and I took a short walk after a long day and just happened to run into this beauty:

Amazing is what you are, America.

Our reason for being in the nation’s capitol this week is to advocate for ALS research funding.  You know what another word for “advocate” is?  Lobby.  And that is a word I never imagined I would want to attach to my person.  It seems like a label that is usually preceded by negative words like “fat cat”.  Perhaps this is an erroneous assumption drawn from one weekend of continuous West Wing watching, but the phrase “fat cat Washington DC lobbyist” sticks in my brain like a festering splinter.  And yet…I will wear it proudly for this cause.

We have spent hours and hours in sessions, learning about the latest in ALS research developments.  We have spent hours in meetings with congressional representatives.  We have spent hours in the bowels of the capitol, going through tunnels and hallways and a strange little subway, trying to find our way to offices.  We have also spent hours together, our little 7-person delegation from Oregon – we have laughed and cried , shared stories of those we love and in short, helped one another have hope.  I have so many feelings to share but I’m frankly, still processing so many things.  The week has been beautiful, deep, difficult and amazing.  For today, let me just say: we are grateful for a God who loves us and people who care about a cause that isn’t very pretty to look at.  The ALS Association crew?  Nothing short of astounding.  Incredible.  Dedicated.  Driven.

So, that’s a brief update.  Thanks for all your prayers and love…we’ve needed and felt every one.

Big love,

Bo for Team Stern

Back to the Joy Dare on this beautiful first Wednesday o’ May.  May in Central Oregon can go either way, so I am loving that the scales have tipped toward spring.

So, today’s joy prompt is Three Gifts Flat.  Fun!

{Nebraska}  We lived in Nebraska for four years and, though it was quite a shock to my mountain-loving heart, I grew to love the wide open spaces and big skies.  We have dear family and friends in Nebraska, which make it just about the second best state ever.  I’m so excited to be going back next weekend for a conference and to reconnect with the lovely land of Nebraska.

{My Bible} Not even kidding, I love that it’s flat.  Have you ever considered how you would pack it around if it was lumpy or a circle or a trapezoid?  That would make smuggling very difficult (not that I’ve ever smuggled anything anywhere, but it’s good to think these things through.)

{My schedule in August}  This week is b-a-n-a-n-a-s, and I am so excited for some free time in my schedule.  However, things are pretty slammed through June, better in July, and glorious in August.  By glorious I mean flat, like Nebraska.  Wide open.  Room to roam.  Hallelujah!  (But also?  Yay for full schedules because it means we’re still moving and going and living a life on purpose – I know that’s not the joy thing today, but it deserved a mention.)

So, how about you?  What are your fave flat things?  Think, think, think…it’s a fun one!

I can’t believe we’re already staring straight into the eyeballs of May!  With this wonderful month comes happy weather (hopefully) and Mother’s Day.   Later this week, I’ll share a couple of ideas for mom but I wanted to kick this week off with my very favorite.

Looking for the perfect gift that will make your mom feel loved and happy..and probably she’ll also cry?  How about give a gift in her name which will help bring babies into the world safely?

For the second year running, my blog and many others have joined forces with the always awesome Adriel at The Mommyhood Memos, who  has developed the Bloggers for Birth Kits initiative.  I love this whole idea and I think it’s a great thing to get involved in.  Check out the details here.  With very little energy or expense, we can make a very big difference in the lives of moms and their precious, new littles.

Okay, that’s it today.  This week is outrageous.  Seriously, it is ferociously busy – I have a conference, a child coming home for her birthday and a very serious book deadline – oh, and there’s the little matter of my actual job.  So when I say I have good plans for the blog-o-Bo over the next seven days, I say it with something of a wry smile, hoping that I can actually deliver said plans.  We shall see.  But on tap is:  more of the joy dare (oh, how I’ve loved reading about your joy gifts!) and more on moms and why they matter and how you can bless yours on her special day.

Strapping in for a wild ride,

Bo

Today’s joy dare is veeeery clever (great job, Ann!)  I thought it would be hard, but it was actually easy peasy!  The joy prompt is: Three Gifts Ugly Beautiful. 

{Mushrooms}  Oh, how I love them.  But they are not very pretty to look at.

I remember the 70′s (yes, I sure do) when mushrooms were used as a decorating motif – like these mushroom canisters I found on ebay:

I didn’t buy them.

{Carnival Glass}

Do you remember this?  Originally produced as a sort of poor man’s Tiffany’s, this glassware was invented in the early 1900′s.  It was low cost and got it’s name because it was often used as prizes at carnivals (I remember trying to win a carnival glass candy dish at the Timber Carnival in 5th grade.)  Some of it is pretty – I have an orange set that I really love, but most of it is rather unfortunate looking.  Still, it reminds me of grandmas and aunts and ribbon candy at Christmas.  It’s beautiful.

{Baby Pigs}

Heh.  My work here is done.

Runners up included:  dill pickles, souvenir shops in coastal towns, this season of our lives and our wedding invitation.

So, come on – you know you want to.  Tell us an Ugly/Beautiful gift in your world that brings you joy.  Is it your husband’s feet?  Your old car?  Your senior picture?  Favorite vegetable? We wanna know, we really do!

Joyfully,

Bo

Well, today’s joy prompt (still working from Ann Voskamp’s Joy Dare) is Three Gifts Moving.

Moving, moving, moving….that’s me stalling and thinking and thinking and stalling.  Because – moving?   Hmmm.

Oh!  Got it.

{Running water}  Have I ever mentioned that my great Aunt Francis raised six kids under seven in a cabin with no running water.  Or it was no electricity.  Or both.  I don’t totally remember, but I do know that I am thankful every day for such easy access to clean water.  In a world where 1 in 6 do not enjoy this privilege – and where *1.3 million children die every year from drinking contaminated water, this gift gives me great joy.

{The ocean}  I know I’m stuck in the water theme here, but there’s just nothing quite like the roar of ocean waves to remind me that He is God and I am not.

And finally, the third moving gift…

{John 1:4 & 5}   The Word gave life to everything that was created, and his life brought light to everyone. The light shines in the darkness, and the darkness can never extinguish it.   Amazingly, incredibly moving.  Every time.

Gosh, this one was really hard.  Give it a try – I dare you!

Joyfully,

Bo

*P.S.  1.3 million is the amount of people in San Francisco and Boston combined.  That’s too many children without clean water.  Please consider attending The Well next week – your conference fee will get you lots of great speakers as well as fantastic music by Elliot and Leeland, but it will also go toward providing clean water in developing nations.  Get it?  The Well. 

OH, also – THIS JUST IN:  My friend, Rene, is having a facebook Water Party.  All she wants for her birthday is to build some wells for people who need them.  Join the party here or start one of your own.  Such a fantastic idea, Rene!

Continuing with the Joy Dare and today’s joy prompt is an interesting one:  Gifts of cloth, steel and wood. But I am up for this challenge and ready to rumble with some joy!

1.  A Gift of Cloth

These prayer shawls from our friend, Jean.  When she gave them to us, I never imagined how much we would use them.  Here’s proof:

They are soft, pretty and perfectly sized.  Wrapped in these shawls, we feel surrounded by all the prayer and love and labor that went into creating them…and that is a pretty wonderful gift.

2.  A Gift of Steel

Oh, this one is dear to my orange-loving heart.

It’s lived a lot of life and it’s cooked a lot of family dinners…and that’s why my orange dutch oven is a gift of steel that I adore.  Steve bought this for me one year for my birthday and I still remember the day it arrived.  It’s clearly seen some wear and tear, but the whoosh of the gas flame beneath this big ol’ pot is one of my favorite songs in the soundtrack of my life.

3.  A Gift made of Wood

This piano has been in my family longer than I have.  I learned to play on it and have worshiped about a million prayers up to Jesus on it.  Like my dutch oven (and myself!) the years of experience have given it some “character lines”, but I wouldn’t want it any other way.  This piano knows all my secrets and I love it.  It brings me joy.

I like being challenged like this – it makes me dig deep and be intentionally thankful.  So get thinking and share with the class in the comments – what gifts of cloth, steel and wood bring you joy?

To many joyful thoughts and days and years and forevers,

Bo

Well, here we are at the end of April.  Does it seem like time is flying especially, uncomfortably fast?  We are trying to capture many moments…but sometimes our hands get full and sloppy and we forget to focus.

I’ve been reading Ann Voskamp’s blog for a long time, but I only recently noticed her Joy Dare.  It’s very fun and challenging and since I’m a little pressed for both time and joy right now, I decided that for the rest of April I’m going to blog her joy dare daily and see how it goes.  I think it’ll be good for me and also – it would be good for you!  Why don’t you show up here every day and add your three things to the JOY list?  It will be good for ALL of us!

Today’s joy dare was pretty easy for me….but also sort of hard.

April 24:  Three Gifts Fragile.

• My grandson, Greyson.  He is fragile and this is as it should be.  All things bright.  All things new.  All things perfect with this one, tiny, unstoppable miracle of a boy.  He is fragile, but he is life.

• My sweet husband, Steve.   As this disease moves through, it marks his body with cruel depletion.  After he eats, everything is more difficult and he needs to spend some time with the AVAP machine, letting it do the big work of breathing.  His arms shake with the effort when he raises his hands in worship.  Yes, he is fragile…but he would also be on my list of Strongest Things, so there’s that.  Only God can bring superhuman strength from ravaging weakness.  Only God.

• Spring.  It feels so fresh but fleeting.  In central Oregon, it’s wispy and thin.  It seems that at any moment the beautiful balance of warm sun and cool breeze could be bullied out by a sudden snow storm or scorching heat.  Something about its fragility makes it all the more winsome and worthy.  This year especially, I’m so thankful for spring.

So how about you, friend?  What are Three Gifts Fragile that bring you great joy?  I truly can’t wait to hear!

Bo

This spring?  She is full.  Really full.

This weekend, I’m traveling just a few miles down the road to speak at a retreat for the women of City Center Church.  Oh, I love this church and these ladies and I’m so excited to be with them! Next week is The Well – a conference hosted by Elliot here in Bend and featuring the amazing worship band, Leeland (not too late to sign up for this one and it’s for anyone who loves worship, not just those who lead worship.)  Can’t wait to speak at this one!  After that, a conference in Nebraska, then I’ll meet Steve in Washington DC for a week of ALS Advocacy.  After that a couple more things and then a meeting with my publisher in Colorado Springs and then…silence.  Blessed summer silence.  I’ve intentionally kept my summer nearly wide open, with lots of room for deck-sitting and book-reading and kid-loving.

I’m excited about the events coming up, but this morning I can’t stop thinking about summer, and all the books that are lined up like soldiers, waiting to be read.

Into the Free, by Julie Cantrell.  I love novels but I do a lot of reading for my job and I don’t have time for much non-fiction.  But this one has been getting great reviews and Kindle sucked me in with a fantastic one-day-only deal (I think I paid $2.99), and I’m ready to get going on it.

The Scarlet Cord, by Jon and Ann Dunagan.  Jon and Ann are great friends of ours and they have dedicated their wholes lives to global missions.  I got this book last week and as I thumbed through it I knew:  it’s a classic.  It brings missions into the here-and-now and, more than that, into the possible.  The Dunagans live in a world where everyone is called to missions and nothing is impossible.

Erasing Hell, by Francis Chan.  All of Chan’s books were free on Easter (he also wrote the wildly popular Crazy Love and Forgotten God).  This one is a rebuttal to Rob Bell’s book, Love Wins, which I read last year.  So – dueling viewpoints of very intelligent men?  That’s a good way to spend a summer day.

Guttenberg the Geek, by Jeff Jarvis.  Seriously, SO excited about this one.  My friend, Nita, messaged me about this one day because she said it reminded her of me (could there be a better friend?)  I love the story of Guttenberg (the inventor of the printing press) and I can’t wait to read this .99 steal of a deal.

Write Good or Die, by Scott Nicholson.  This one is a collection of essays on the craft of writing. Sometimes I think I like reading about writing more than I like reading about anything else, and I’m pretty certain I like reading about writing more than I actually like writing.  So, there’s that.  This one’s free on Kindle, so there’s also that.

Surprised by Hope, N.T. Wright.  My niece bought this book for me months ago and at first I started to rush through it but I soon discovered that it’s not for rushing.  It’s a book to be absorbed and processed and experienced.  I love N.T. Wright (he’s British so I like to try to read his stuff by hearing his accent in my head) and this especially right for my season.

The Dressmaker, by Kate Alcott.  This one might not get to wait until summer.  Alcott did meticulous research about a real fashion designer who survived the sinking of the Titanic in a lifeboat that contained only 12 people (rumor has it she paid the crew members not to go back for others).  The history is rich, the writing brilliant and the characters are fascinating.

So, that’s how my summer’s looking.  What’s on your reading list?

Bo