The Story Behind the Book

I think, behind most good books, lays the story of an enduring friendship.  This post is about my friend and pastor Steve Wiens, who has cheered me and my writing on since we became friends in 2009.  Steve wrote the foreword to my book and has since written his own called Beginnings which will come out this Friday.  He will guest post next week so you can read more, but this week, I hope you enjoy the story below.

“I’ll write it out for you!” 

I stopped and looked wide-eyed at Steve, wondering where those words had come from that had just spilled out of my mouth.

It was a Wednesday night and the lobby at church was swarming with people.  I had just finished telling my story to a room full of junior high students and wasn’t ready to spill out a summary in the middle of a crowd.

“Maybe not tomorrow, but this weekend, I could write out my story and send it to you.  Would that be okay?”  I nodded along with my suggestion, trying to convince myself along with Steve that this was, in fact, a good idea.

We wrapped up our conversation, and as soon as I was out the door, I turned to my friend Camry and squealed, I think my life just changed!

That wintry night back in 2009 was a beginning.

There are rare moments in life where God allows you to see people, and, as you look at them, you don’t just see the moment you’re in, but several moments into the future.  You realize you are connected, even though you’ve just met, and somehow you know things about the person looking back at you, even though they’ve never been said. 

That night, in the midst of a buzzing church lobby, I looked at Steve and saw that he was a writer….

….but somehow, I was the one writing.

I went home, opened my laptop, and began to pour out my soul. I had never committed to paper, or really even said aloud what it was like to have cerebral palsy, to look down every day at feet that didn’t match.  I had never expressed to another person besides God how deeply hurt and disappointed I had been that God had decided not to heal me when I had begged Him day after day.  I was just learning how to love God again in this area of my life, to let some light in, to really trust that He held me in His hands….

I wrote and wrote and wrote…..my words became an e-mail attachment that became an article that became…a book.

Writing a gut-wrenching memoir is like subjecting yourself to a wound being cleaned, being scrubbed over and over again until you are deeply and fully healed. I remember one August afternoon I was sprawled out on the floor, exhausted.  I had wanted to write for six hours that day, but by 2 PM, I had fallen well short of my goal, bogged down by the work of carefully revising some of the most painful chapters in my manuscript.  I remember convincing myself to go back to the computer, to keep typing, and there I found an e-mail from Steve:

Jenny,

I've been writing a little bit lately. Just writing some essays that may be a part of a future blog. And I thought of you - and I wanted to say: Keep writing! Keep going! You have something to say and people need to read it! You go girl!

Steve

Steve did go on to write a blog, and I remember him texting me the morning it went viral.  I smiled, because Steve, along with the rest of the world, was realizing together how good his words were, how much they needed to be shared.  The writer I saw that night at church was beginning to compose.

I have had several unique opportunities since I finished Walking with Tension in 2014.  Joni Eareckson Tada and I both had articles published side by side in the Bethel Magazine.  We had an opportunity to meet months later and talk about the experiences of grief and disability.  This was quite miraculous, seeing as I threw her book angrily in the trash when I was a teenager.

I got to meet and thank Dr. Victor Anderson, a Dallas Theological Seminary Professor whose thoughts on friendship and contributions to the book Why O God have been such a mentor to me in my journey of accepting disability in my own life and in the lives of others.  The summer my book came out, Victor happened to be preaching alongside Steve and Northern Pines Camp and it was incredible!  I woke up every morning and wanted someone to pinch me, it was so good.  You can hear it all online. 

I’ve been on television, spoken at two universities, a few non-profits, and have had several opportunities to sit across from people who have also been impacted by disability as they share their stories.  I’ve had the occasional reader come up and thank me in public, sometimes in tears, because, as Steve tells me, my words have helped people name their vulnerabilities and move towards wholeness.

Perhaps my favorite experience, though, as I’ve begun to write, is watching my friendship with Steve unfold as we cheer each other on in sharing our words with the world.  Steve has written a beautiful book about creation called Beginnings, which comes out January 1^st, 2016.  I’ve had the honor of reading this book in its entirety; what a gem. Steve tells personal stories in a warm and welcoming way as if he is your next door neighbor. Although I grew up reading the Bible, I found the way he illustrates stories accessible for me, sometimes for the first time in my life! There are spiritual practices and questions at the end that you can ponder on your own or together with friends. It’s a perfect gift for you or your small group.  I hope you read it soon and enjoy it as much as I did.

The Joy List

I suffer from seasonal depression. 

Every year as we turn our clocks back and the clouds roll in, I get sad.  Driving at night, I feel almost as if the darkness is trying to reach into my car windows so it can devour my soul.  Kind of like Harry Potter’s Dementors, but without form.  I can become withdrawn from humanity, losing my appetite for human contact, and at the same time, feel desperately lonely. 

I’m less motivated:  I want to sleep more, eat more, and cry more.  Christmas is not the most wonderful time of the year; that honor belongs to the month of July.  So, since mid-November, I’ve started to make what I like to call, The Joy List.  I’ve tried to notice and remember things in my life that bring joy.  I hope you enjoy reading mine, and in turn, are inspired to create your own.

Joy is…

The grandpa whose life was saved from what could have been a fatal freak accident and now gets to spend his golden years with his grandson, playing cars and trucks on the floor, laughing and holding each other close.

The auntie who visits her niece’s freshmen dorm to deliver the surprise that’s she’s been secretly saving for her niece’s college education for years…and the dream she holds to study abroad, the one she had been praying for that morning, is not only going to be a reality, but it’s going to be paid in full.

The friend who invites you to dinner, the one who has already attended her mother and brother’s funerals, has some news to share.  You squeal with delight and embrace in a hug because she is pregnant! 

Joy is eating dinner with friends.  Part way in you realize the food is so good, and you feel so relaxed and at peace, but the real reason you feel at rest is because of the people sitting with you; they know the real you and love you so much.

Joy is running into your little nieces and nephew while you are in town.  Everyone lights up and is so excited.  Every time.  The littles share their news and their love.  There are rounds of hugs and kisses before everyone goes on their merry ways.

That extra day off you weren’t expecting.

Your second cup of coffee.

Joy is standing in church to sing.  You catch the harmony and sing it out strong.  Suddenly your whole body is participating in expressing what is deep in the soul.  Joy is closing your eyes in that moment, imagining yourself standing before the throne room of God, earnestly pouring it out, this overflowing expression of gratitude Thank you, thank you, thank you, but in this dream you are standing there in this cute black and white party dress, with shiny red heels, whole and complete, but even then, you realize, the thing you want most, is still the love of God.

Joy is sitting in the living room by the fire.

Joy is watching the sun rise, painting the sky with fiery pink.

Joy is working hard to pedal up to the top of the hill in the park, pumping my legs, throwing my back into it, lecturing myself, You can do this, or your name isn’t Jenny HILL! Come on!  Joy is finally reaching the top and then sailing down it like a little kid.

Joy is giving your friend a second big hug, because the first big hug just wasn’t enough.

Joy is holding a wee baby, new to the world.  Kissing his head and whispering in his ear: You are precious.

Joy is celebrating with your friend who, after many years of work, has finally published his manifesto.

Joy is wearing pink and feeling pretty.

Joy is dancing around your kitchen to songs that make you happy.

Joy is discovering the beauty in the person you just met.

May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

Merry Christmas!

Love

I’m blessed to have people in my life who consistently ask me, “How can I pray for you?”  My answer lately has been, “You can pray that I would be more loving.”

I find myself wondering from the prescribed lectionary Advent readings to the familiar words of 1 Corinthians 13, the famous Love Chapter.  There I find a menu of things I am: impatient, envious, boastful, and self-seeking.  I am an accountant, making a meticulous record of wrongs that have been done to me.  My keen memory is fabulous for the work of a librarian, but cumbersome when it comes to forgiveness. 

This idea of agape love that Paul is illustrating in chapter 13 evokes the picture of a love-feast.  As if our lives were a banquet table, all of our love spread out and available for others to enjoy.  Overflowing amounts of patience, kindness, and goodness to go around, gobs of protection, trust, and perseverance.  But, so often, my love does not look like a banqueting table.  Lately, my love looks more like a food fight.  I want to dip my spoon into the lime green Jello-O of envy, cock it backwards in a catapult, and fling it!

How do we become more loving?

How do we put down our spoons, putting the ways of childhood behind us like Paul suggests?

This, I have been pondering, for the better part of a decade.

We could pray for those who persecute us. (I think I just shot milk through my nose.) How interesting of David to observe in Psalm 23 that the Lord prepares a table before him in the presence of his enemies, as if the love feast were especially available when we find it most challenging to commune with others. I’m learning that prayer for those who persecute us is more than an act of obedience, more than the “Christian” thing to do.  Sometimes the inky black that surrounds our enemies is more layered, confusing, and dark than our human souls can handle.  In our pursuit to love our enemies, we must reach out to the Light of World.  He is our only hope for a break through. 

We could spend time with people who suffer.  People who experience overwhelming need have so much to show us about the sustaining power and friendship of God towards those He loves.  The preciousness of their lives may motivate us to take an honest look in the mirror, realizing that we have both a real need and greater capacity for love and compassion in our hearts.  It is what has propelled me to accept the invitation to take a seat at the Table, simply asking the Father if I could have a second helping of His never-failing love.

For the past year or so, the name John Stumbo has come across in conversation.  One day he was running marathons, and the next he was he was lying in the hospital.  Unexplained weakness had visited his body, and for reasons that are unclear, John lost the ability to swallow.  His muscles simply stopped working.  John has now recovered from his mysterious illness, but what has taken place in his heart and mind is still unfolding.  He has since written two books, and is now the president of the Christian and Missionary Alliance.  I will include his thought-provoking testimony at the bottom at this post if you’re interested in watching.

I want to leave you with this beautiful essay written by John about love.  It is inspiring and convicting.  I hope you take the time to read it.

Here is just a preview:

Love is not about “look at me; see what I can do.” It’s not about how smart I am, how cool I act, how witty I can be, or how much God has used me. It’s not about how big my ministry is, how many books I’ve sold, how many books I’ve read, how many likes I get on Facebook, or how many people like me at all. Love isn’t about how much I’ve sacrificed or how hard I’ve worked. It’s not about my talents, my interests, my success, my anything.

Love isn’t primarily about me.

Love is patient with the person who doesn’t get the point the first or the fifth time.
Love is kind enough to do for another person at any moment what we wish others were kind enough to do for us.

Love is happy for someone when he or she succeeds, gets a promotion, a raise, a great vacation, a nicer car, a nicer home . . . has another child, a happy marriage, good health. Love is happy for those who are living the dream we can’t seem to attain.

Here is the link to entire article by John Stumbo, written in early November 2015: http://www.cmalliance.org/alife/we-will-love/

John’s Testimony

https://www.youtube.com/watch?v=vcrWgB_GQww

If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but do not have love, I am nothing.  1 Corinthians 13:2

Peace

What is it like to experience peace when you are serving in the military?  I asked a veteran I know to write on this topic.  He graciously agreed to compose for me, but asked to remain anonymous.  I think you will find his words insightful.

I had just arrived in the Kingdom of Bahrain after what seemed like an infinite flight. I was on my way to the USS ENTERPRISE to join the crew in the engineering department. It was a bright, sunny morning in the Middle East but it sure felt like bedtime to me. About 15 other people and I were waiting in the shade of a tent on a concrete pad with nothing but plain white buildings and sand in the background. Other than a couple of camels tied to a fence, it was not a very remarkable place.

I was anxious to find a phone to call my very pregnant wife who was scheduled to have a C-section with our first child later that week. Finally the bus arrived to bring us to the processing building where we were assigned a place to stay and told when we were scheduled to depart for our duty stations.

When I got to my hotel room, I finally had a chance to call home. My plan was just to tell her I made it and that I was going to the ship early the next morning. Turns out she was going to do all the talking. She answered her cell phone from her hospital bed where she had given birth to our daughter a few hours earlier. I had missed it by a day! The good news was, both she and the baby were great and she had friends there to take care of her. The bad news was, I was at least 6 weeks from getting home to see them.

Getting to a new ship is stressful enough when you’re focused on the task at hand but having a new baby that you’ve never even seen a picture of is something that keeps you distracted. My task was to get all of my qualifications complete while the reactor was critical because when we got home, we would be shutting down and heading into an overhaul period where I wouldn’t have a chance to operate the plant at power. My watch station was titled Propulsion Plant Watch Officer or PPWO. I supervised the controls of two reactors and the associated engine room.

I also was put in charge of a division of about 20 mechanics. These guys (and ladies) were smart and always wary of a new officer. And, they all knew WAY more than I did about the ship and how it worked. My days consisted of ensuring my guys were performing their maintenance checks, standing appropriate watches, taking logs, and staying out of trouble. When I wasn’t doing that, I was spending as much time as I could standing my own watch, under instruction, learning as much as I could. I had about 50 individual tasks I had to perform, dozens and dozens of hours of watch to stand, a division to run, and an engine room to keep operating – all the while trying not to get lost on this 1,000 foot floating monster. Just remembering where to go to eat was a challenge. Normally, these things are all taken in stride but I couldn’t stop thinking about my small family waiting for me at home.

Things were not moving as fast as I would have liked. Nothing moves fast in a nuclear power plant (unless of course they are going wrong). Weeks were flying by and I wasn’t getting my tasks done proportionately. I had qualified as the after steering safety officer which meant any time we were transiting anywhere near land, I was at the bottom of the ship in a place called “after steering” waiting for a control failure that would never happen; more importantly, I wasn’t making any progress on my quals. By the way, it takes FOREVER to transit the Suez Canal at 10 knots. The phone system availability was spotty and the internet was even worse. I was stressed. I missed my wife and ached to meet my daughter. The ship was either very hot or very cold, but always big and unfamiliar. Just finding the stinking bathroom was a 10 minute evolution that I didn’t have time for. There were over 5,000 people on board who all knew what they were doing except for me. They were everywhere yet I was alone.

Wait a minute. I wasn’t alone. The Lord put me on that ship at that time. He sets my challenges and enables me to meet them. He was there too. What does Ephesians say? Oh yeah, “For He himself is our peace.” Peace! That sounds good. That’s what I’d been missing. Not because it wasn’t there, it was; He was. I was so focused on myself, I forgot that God not only provides peace, He is our peace all the time! I needed to let Him be in control, not me. I needed to look up.

What a shift. I started to move well through my tasks. I started to feel confident in the control room. My guys started to get to know me and trust began to develop. I could find the wardroom, head, engine room and my stateroom in just under what would be considered a reasonable amount of time. We were heading home soon – in time for Christmas! I even managed to sing a few carols while down in the bowels of after steering (don’t worry, it was so loud down there that no one else had to listen).

We pulled into Norfolk on December 19^th. It was a Wednesday. The folks who had become parents while they were away got to get off the ship earlier than most. There was a tent setup on the pier where family members could wait for their sailors. Most were outside, smiling with anticipation. I looked around and didn’t see any familiar faces. I went inside the tent and saw the most beautiful sight I’d ever seen in my short life. There was my dear wife, nursing a baby. She smiled. My little one was mostly covered with a blanket but her tiny little legs and feet were sticking out one side. I stopped in my tracks – there are no words for moments like that.

Peace. Sometimes you have to consciously look for it and sometimes it overwhelms you and your heart swims in it. But it is always there – He is always there – knocking on the door. I encourage you to open it.

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.”

Phil. 4:4-7

Hope {and L-O-N-G-I-N-G}

There are unexpected moments of wonder as a teacher when the roles between you and your students are reversed. The students teach you things at a moment when you least expect it and you suddenly become their student. It is sublime.  

Late one morning I was standing in my reading well with the kids huddled around me. Sometimes I feel like a mother hen with her chicks surrounding her nest. We were reading The Growing Table, a biography of Farmer Will Allen, who wanted to grow food to feed the world.  When I asked the kids how they would describe him after I had finished reading the story, one of the students raised his hand and said, "He was smart and he had longing."  As the words fell from his lips, I stopped, so intrigued. "What did you mean?" I asked, giving him a high 5. "He had longing to make his dream come true."

As I went to lunch later that day, I wondered about Jesus’ statement, Let the little children come to me…for the Kingdom of Heaven belongs to such as these.  Kids are so full of wonder and perspective.  Uninhibited, unafraid to spill fourth what is in their soul.  Children, I am convinced, have something to teach us, and we are wise to surround ourselves with them, stopping to listen to what they have to say.

The student in my reading well gave me such pause because I experience a daily dose of L-O-N-G-I-N-G.

“Who thought up this word!?”  I have repeatedly asked my friends, almost angry.  “It has the word L-O-N-G in it!”

They shrug, unsure how to respond, not liking its nature either.

But I can’t get away from this experience of L-O-N-G-I-N-G.  It’s been stretching itself out in me for months.  Every day around 9:30AM, while I snack on nuts and cheese, and I feel this ache emerge from my soul.  It’s as if someone has taken their fist, reached into my chest, grabbed hold of my heart with their fingers, and is now pulling me along in their grasp.

Longing looks in both directions.  In one direction, longing stands at a closed door.  Grieving over a beloved past, unable to enter that time or experience ever again.  Longing knocks at the door in vain.  

Longing also turns and stretches out its fingers over a new horizon, open and willing to grab hold of a breathtaking future that is rising with the sun.  They skies are not filled with tears from this angle, but are bursting forth, highlighting the canvas with orange and pink.

It’s scary to name the things we are grieving or are reaching for.  We don’t want to say Hope’s name aloud, because we all know that Hope has an ugly step-sister, Disappointment.  She crowds the conversation sometimes, endlessly reminiscing about the pain of the past, and when she is done, you want to stop dreaming, stop feeling.  You leave the room, realizing you have nothing to say to Hope.

But the second grader in my reading well hasn’t meet Disappointment, or at least, hasn’t learned to listen to her yet.  His observation of longing, suggests that it is essential to moving forward, to being expanded.  “L-O-N-G-I-N-G is this insightful word that has given feeling to distance. This ache between where we are and where we want to be. Longing, I realized that day, is the discomfort that ultimately propels people forward to make change in the world, to make their dreams a reality. Longing holds hands with hope, and together, their friendship brings forth our dreams.

“Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.”  Proverbs 13:12

In Everything Give Thanks

I wrote this post back in 2012, but I thought I would pull it out this week in honor of Thanksgiving.  I’ve been learning how to wear hardware with grace over the past three years; I’ll post a picture of myself at the end so you can see what I look like going to work in the morning.  

This morning I grumbled a little bit as I strapped on my new carbon-fiber leg brace at the breakfast table. I knew today was going to busy and I needed all the support I could get. My brace and custom made shoe inserts have been very helpful, but it often means I have to wear tennis shoes with my dress pants to work.

"Be thankful!" I commanded myself as I moved around the kitchen. "Be thankful there's a clinic right in MN that treats CP. Be thankful you were able to get an appointment right away. Be thankful for health insurance. Be thankful you live in a country where you can even get a brace."

"Ok." I negotiated with myself. "I'll be thankful." But secretly I wanted to wear stylish shoes today. I pined for my new black boots that were sitting upstairs in my closet. I thought of colleagues who are always dressed so nice, coordinating their outfits from head to toe. I had coordinated my outfit today too--from head to...ankle.

After lunch a class came into the media center for their lesson. One of the students had injured his leg and had most of it temporarily immobilized. He was limping. "Now he's like you!" The class chirped.

"You're right!" I nodded. I sat down in a chair, pulled my pant leg up to my knee, and showed the class my brace. We talked about what it was and why I wear it. I let them ask questions. I didn't have to try to be thankful anymore, because in that moment I was thankful that today wearing my brace was helping me to connect more effectively with the students in front of me.

Today I was certain that the six and seven year old children that were sitting in the reading well had become my teachers, illustrating what Paul had learned in 2 Corinthians. God's grace really is sufficient for me and His power really is being made perfect in my weakness.

1 Thessalonians 5:18 “Give thanks in all circumstances; for this is God's will for you in Christ Jesus.”

Have a Happy Thanksgiving!  I hope in the midst of the things you find challenging to be thankful for, you get a glimpse of goodness.  That’s what this moment was for me.

Next week I’ll start writing on the themes of Advent.  The first one is Hope.

Limited and Limitless

What does it mean to be limited AND limitless?

 

I was recently asked this question in an interview and it’s got me thinking…

I know what it means to be limited.

Eighth grade marching band…why did I even ever attempt that? My peers asked me every day to quit.   I still remember seeing my mother’s compassionate face in the crowd as I attempted to march down the street while carrying the bells, simultaneously struggling to keep my oversized sunglasses on my face.  When the season was over, I didn’t just quit marching, I quit band altogether.

I remember trying to run a 5K in July 2014.  I trained for 18 weeks leading up to the race and during that time I dealt with pain, inflammation, and the tangled challenge that is cerebral palsy.  There were days where I swore my legs got together, voted to strike, but neglected to inform my will or my determination.  I would get ready to run around the track and my body hardly wanted to move.  By the time the race came, I could only jog the first mile before I ran out of gas and finished walking the rest of the way. 

And then there was the time, just over a year ago, when I had an appointment at Gillette.  I spent hours discussing the minutiae of my disability with various medical professionals.  If I wasn’t sad coming in the door, I was certainly deflated on my way out.  I didn’t cry though until my mom dropped me off at home and saw what a crazy mess my house was.  I had been hiding the fact that I really didn’t have the energy to clean my floors, AND teach, AND get a doctorate, AND maintain friendships.  I clutched my mother, buried my face into her chest, and cried.

Limitations are often seen as hurdles and people, especially those with disabilities, are considered successful if they can somehow overcome them. 

I don’t see limitations as hurdles and success for me is not about doing the impossible. 

Limitations for me are boundaries, and success is about learning how to live well within them.  Life is more than a race, it is a classroom.  When I let my limitations teach me, when I slow down long enough to appreciate challenges from all angles, that’s when I’ve truly experienced transcendence.

 

Fatigue has been the bane of my existence. There have been moments when I wish I could shed my tired body like the robe that it is, letting it lie on the floor in a heap while it recovers so my spirit can go about its business, free from its container. Fatigue has defined how I spend much of my time, it has limited opportunities I’ve had in life, and made me ask some dark questions about my potential when I can’t find the energy to get off the couch. But fatigue has also taught me the value of rest, helped me to unwrap the gift of Sabbath, and has given me the opportunity to focus with precision on the things I value most, because there simply isn’t enough time or energy to do it all.  As one person with CP said, “It's not just my legs. CP affects every part of my body and causes chronic fatigue and pain. Please be patient, for I have to spend my energy wisely.”

But what of being limitless?

When I wake up after 8 hours of sleep feeling like I haven’t gone to bed yet, when I struggle to get off the couch, when I have to sit down at church and sing because I’ve run out of the stamina to stand….

When I need to remember that my limitations themselves are limited…that’s when I like to read this passage, saying it like a prayer:

2 Corinthians 4:16-18 New International Version (NIV)

¹⁶ Therefore we do not lose heart. 

Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 

¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 

¹⁸ So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

I’ll conclude with this Ted Talk by Phil Hansen, an artist who embraced the tremors in his hands, which ultimately transformed his artwork and expanded his artistic expressions:

Embrace the shake: https://www.youtube.com/watch?v=YrZTho_o_is

His Eye Is On The Sparrow

I have known the Scheevel Family since 2002.  As a freshman in college, I sat in the same pew at Hope Covenant Church each Sunday.  I had the privilege of visiting Hope Covenant last month when Nick and Rachel Scheevel spoke about the birth of their son, Caleb.  You can listen too, look for October 18th, “Love One Another—Baby Caleb’s Story.”  I came home from church that Sunday, sat at my kitchen table, and thought, I’d love to have Rachel write their story out for my blog.  It’s a  such a sweet testimony to the beauty of life.  Enjoy!

By Rachel Scheevel

Out on our deck hangs a well-visited birdfeeder. It has been a treat at this time of year to watch the different varieties of birds pass by on their way to warmer climates. And while we get the occasional woodpecker or blue jay, the most frequent visitor is the sparrow. These little creatures present a daily reminder for me of God's protection and provision, even in the midst of fear and uncertainty. I have needed this reminder over the past year, as our family has been stretched and challenged in ways we never anticipated.

In May of 2014, we found out that the son we were expecting had a neural tube defect. Because of this, his skull had a large hole in it, and the doctors and ultrasound technicians informed us that at least 50% of his brain had hemorrhaged outside of his skull. Multiple opinions confirmed that he had zero hope of survival beyond a few weeks.

My pregnancy continued and we prepared ourselves to say hello and goodbye to our son, Caleb. We learned what it felt like to grieve, and we began to learn how to wait on God. In this wilderness of Waiting, we saw Him stand with us, quietly and steadily.

Caleb was born on September 29th, 2015, in a surprisingly uncomplicated and swift delivery. Our little sparrow. He nestled his way into our hearts slowly over the next few weeks and continued to defy the doctors' predictions. We began a series of surgeries that gave us increasing hope and challenged our endurance. Instead of preparing for another pregnancy, a redemption, God redeemed Caleb and began to heal our family from fear and grief.

Our journey with Caleb is not a smooth one, and complications continue to arise, but we know that God will never leave us, and He sees us in our struggle. We know that, just as He has a plan for the sparrows that visit our birdfeeder, He has a plan for our family and for Caleb's life. It may not be the plan that I would have made, but already, I can see the beauty in it.

The task of praying for Caleb has challenged many hearts all over the country, and his sweet smile and story have touched the countless medical professionals he's interacted with. Nick and I are learning tenacity and advocacy. We are also getting better at holding the grief of others, because we have had a taste of it ourselves. Even though our challenges with Caleb have stretched us in ways that we never wanted or planned, we value the experience.

We don't know what the future will hold, and that can be so frustrating. Having all the answers and knowing everything seems so attractive. But, we have to remember, everyone thought Caleb would die, and here he is - a year into his crazy, beautiful life - moving and growing and surprising us all. So we remind ourselves, when the end of a discouraging day arrives and we grieve the complexity of our story, that just like God holds the sparrows, He holds our future as well. 

This Good Word Podcast: Hero

Hello Readers!

 Last week I had the opportunity to sit down beside with my dear fiend Steve Wiens to record an interview on his podcast This Good Word.  Every week Steve chooses one word to discuss, and the word we talked about together was “hero.”  Steve has told me on several occasions that I am one of his heroes, but the really sweet thing is that the feeling is mutual!

Steve has cheered my life on since we meet in 2009.  He is extremely gifted, and has generously shared those gifts with me.  He has encouraged my writing from the first keystrokes of Walking with Tension to its publication, nearly four and half years later! 

Steve has many great qualities:  He runs marathons; he has written a book called Beginnings  coming out January 1^st, and preaches thoughtful sermons where he pastors at Genesis Covenant Church.  All these things are terrific, but my favorite thing about Steve is that he is my friend.  He has taken a genuine interest in my life and I am grateful.  We all need someone like that.

I hope you have time in your schedule to listen our conversation recorded below.  It’s honest and unedited.  We talk about friendship, writing, cerebral palsy, and, of course, heroes. 

Link: http://thisgoodword.podbean.com/e/episode-11-hero/

At the end of this post, I’ve included three ways I have used in the past to honor people I love.  Maybe during this month of thanks and giving, you’d like to try one of them out.

Cheers!

Jenny

Three ways to honor those we love:

Write a letter or a poem.  There’s something really impactful for both the writer and the reader to take the time to thoughtfully name the ways in which a person has impacted your life.  If life allows, sit down with the person over coffee or a meal and read it aloud.  Give them a copy to keep.  It will be a gift to both of you.

Send Thank You Notes in November instead of Christmas Cards in December.  Make a list of 40 people who have given to you this year.  It could be something momentary like an encouraging word something enduring like years of friendship.  Whatever it is, write it down along with the reason it impacted you and mail it out this month.  It’s a great way to reflect on your year with gratitude and a unique piece of mail to receive.

Host an honor night.  Get together with your closest friends and schedule a night for each of you.  Whoever hosts makes their favorite meal for everyone to enjoy and is the one being honored that evening. Following dinner, the guests focus their conversation on the host and present the honoree with gifts representing their friendship.  Be creative!  It could be a letter, artwork, video, prayers, or something else. Each person gets a turn to honor their friend with words and memories, affirming the good gifts God has placed in their life and naming how their friendship has made an impact.  It might be your most favorite thing you’ve ever done with your friends or small group and a great way to practice seeing the beauty in each other.

Six Inches of Power

I dream about wearing high heels.

I loved covering Barbie’s pointed toes with colored shoes to match every outfit she owned hour after hour as a child.  I loved the way her legs looked in them, even though they couldn’t bend.  Sometimes as an adult, I ask my friends if I can try on their heels just so I can see what I look like while they stand next to me in the mirror propping me up.  I hope in heaven, I will have a closet of heels and get to wear the shiny red ones any time I want. 

 I found myself trapped in this day dream again while sitting at a meeting one night.  The woman next to me was wearing these cute black and white plaid heels with black tips and a little gemstone on the top.  I would look like such a beautiful woman in those…and then I stared down at my own shoes: black, flat, orthotic.  I like to have a little hint in my wardrobe that I might, in fact, be a librarian.  My shoes scream it.

There are moments when I’m frustrated by my footwear, especially the years I spent in Reeboks while trying to manage inserts, planter fasciitis, and a brace.  Some days I would close eyes and tell myself, don’t think about it, don’t think about it, it’s not as bad as you think it is.  Then I would open my eyes, see my Reeboks with a dress; Yuck! Cringe, and go to work.

I found myself one day after work sitting in a shiny lobby waiting to meet with a financial advisor.  The receptionist had brought me a hot cup of coffee which I attempted to sip, but every time the door opened, there was this loud “click” which made me jump and spill on myself every time.  Not going to lie, it was a rough 10 minutes. 

Luckily I was soon rescued and seated in a private room away from the pesky door.  The woman in front of me began clicking through slides on a screen, telling me about retirement, health insurance, and Roth IRAs.   She had spent her life making friends with numbers when I had spent my time befriending words.  My head was already spinning slightly when she gradually pushed her chair away from the table and said, “I know it’s just the two of us, but I typically stand up through this part of the presentation.”  Suddenly, there was a tower in front of me, propped up by six inch heels.  Her stilettos were the exclamation point on the end of a sentence that clearly read I am ABOVE you!

This wasn’t about Barbie anymore.

As I looked up at her, I began to feel:

small

defeated

powerless

I looked down, and for a moment, I felt thankful.  Thankful that my misshapen feet have somehow kept me by default from towering over another person, making them feel as miniscule as I felt in that moment.   I pictured my students in my reading nook, huddled around me.  I wondered what kind of message I was portraying in the fatigue I’ve resigned myself to; to, instead, sit and look at my students from eye level instead of standing above them.

Perspective can be life altering; eye level is one thing, but…

What does it mean to come underneath?

I’ve pondered this question often since my encounter with those six inch heels.

I thought about it again while sitting in a pedicure shop in Minnetonka as a little Vietnamese woman sat on a stool and carefully washed and massaged my feet last March, bringing some relief to my aching fascia.  As she painted my nails, I learned that she faithfully worked seven days a week, serving others in this way.  Her act of service was a gift to me and almost felt holy.

I imagine that when Jesus came to earth, he likely walked its roads in sandals.  And when it was time, he took a towel, wrapped it around His waist, and washed the feet of his disciples.  Jesus came for Matthew, Mark, Luke, and John, but he also came for financial advisors, tired librarians, and Vietnamese pedicurists.  He came for you and He came for me.  He came so we might learn from Him to take off our six inches of power and position, so that we too, might learn to serve.

 Let the same mind be in you that was in Christ Jesus,

⁶ who, though he was in the form of God,
    did not regard equality with God
    as something to be exploited,
⁷ but emptied himself,
    taking the form of a slave,
    being born in human likeness.
And being found in human form,
⁸     he humbled himself....

Be the Bridge

My single girl friends are bending the ear of heaven asking for a mate; my married ones are praying for babies. I have a hard time even pretending in the presence of the Almighty that these are my deepest desires.

I’d like to become a speaker.

Not the Matt Foley SNL character living in a van down by the river, or the disabled champion who perpetuates the myth that there are no limits and anything is possible. 

I want to teach people to see each other—to walk into a room and switch the question from “Who do I know?” to “Who needs to be known?”; to look deep into the soul of a human being and see the whole person.  I would love to inspire others to catch a glimpse of our identities reaching far beyond our attractiveness and flaws.  We must learn how to honor each other because we are human; to behold beauty even in the face of our enemies and those who are different because we were all created in the image of God. Even in our quirks and imperfections we must do the courageous work of boldly showing up to our lives as ourselves, because our uniqueness can ultimately become the gift we offer the world. 

Like a mirror, my friend looked at me in the eyes one night and said honestly, “You should be speaking.” 

I had to hold back a few tears. 

What do you do when desire and potential are growing inside yourself, but you’re not sure how to let them out? 

What do you do when there is a part of your identity you’re afraid to let others see except they can’t stop seeing it and neither can you?

Sometimes you hide in your bathroom and cry.

Sometimes you step up to the microphone and speak.

This past October (2014), I led a workshop where several librarians and I sat in a room together and discussed my writing and publishing journey using CreateSpace. I was transparent and they laughed about the honesty of my experience.  I learned that day that as a speaker, “I’d rather keep it real than keep it perfect.”  My friend framed this for me and I look at it every day on my kitchen counter.

I spoke at Hope Covenant where I went to church in college.  I shared about my friend Kris and met a few people following my talk who live with cerebral palsy.  One person in the audience whose life has been impacted by disability couldn’t say anything to me afterwards because my message had reduced him to tears.  Speaking is often about letting your story intersect with the work God is already doing in people’s hearts.

Later in the month, I was asked to speak at a non-profit organization nearly an hour from my house.  Upon arriving I was told that no one had signed up for my session.  I drove home confused and frustrated, learning that not every opportunity that comes across your desk is a good one.

So, when November rolled around and I was preparing to speak at the University of Northwestern, St. Paul Chapel, I thought that perhaps I would simply reuse material that I had developed in October.  But, as every good speaker knows, speaking is as much about listening as it is about talking.  As I began to pause, remembering my life as an undergraduate, I scratched everything I had days before the presentation and developed a completely new talk—it turned out to be my favorite one I’ve ever given.

It didn’t make it on to iTunes, so I posted it to YouTube and included my slides.  Its 34 minutes and I hope you’ll take time to enjoy it.  I share my story, what it’s like to be stared at in public, and my deep convictions that skipping your morning coffee is a crime.  I talk about the need to see each other, to take risks, and unpacked what we might learn about loving others with disabilities from a man in the Bible named Mephibosheth who was “crippled in both feet.”

Be the Bridge Part 1: https://www.youtube.com/watch?v=nqKemLy-JG4

Be the Bridge Part 2: https://www.youtube.com/watch?v=2FawcvQMoUk

Be the Bridge Part 3: https://www.youtube.com/watch?v=hOkwN59vqHw

His Words on Sunday

Note:  I'm relaunching my blog today after a year's hiatus.  To celebrate, I'm doing a double feature.  "I miss your blogs..." talks about what I've been up to this past year.  But, it is the post below that I really couldn't wait to share with you.  Enjoy!

There are two friends that I often see on Sundays.  One speaks for a living….the other can’t open his mouth.

My friend Steve Wiens is the pastor of Genesis Covenant Church. Genesis meets in a theater at a Jewish Community Center that is 40 minutes from my house.  Sometimes it feels like a long drive, but in all the times I’ve gone, I’ve never regretted the journey.  The seats in the auditorium are teal and the stage often holds a set of whatever play is being performed that afternoon.  The church is so full of young families that I joke it’s the church of the car seat.  I’ve stumbled over many on my way to the communion line.

Steve used to stutter growing up, but if you heard him preach on a Sunday morning you would never know it.  Steve unlocks words, explores their original Hebrew or Greek meanings, and helps makes them available to all who listen.  He’s a demonstrative talker.  He likes to move around and makes gestures and faces.  He asks questions of his audience as he speaks because he really believes that we all have something to learn from one another.

Steve also has a podcast called This Good Word.  I love listening to it on my iPhone while I’m going through my morning routine or driving to work.  His voice fills up my car with sound, my head with thoughts, and my heart with hope.  Steve understands something about what it means to be human and knows how to share words in ways that are insightful, honest, and uplifting.  He knows how to create community even when his audience spans the globe.

I love listening to people talk after hearing Steve speak for the first time.  I think they’re blown away by how brilliant he is, but at the same time so warm, relatable, and inviting.  Steve is a good teacher, and many people just like me have received his words on Sunday week after week as some of their favorite gifts.

If the Vikings are playing at noon, I give quick hugs to my friends after church and dash into my car, though town and out into the country.  I stop at the house that has a ramp leading to the door and am greeted by a welcoming party of two Yorkies and a drooling mutt. My friend is sitting inside.

“Hi Kris.”  I call as I enter.

Kris waves his index finger to say hello.  Most Sundays he’s decked out head to toe in neon; all six feet nine inches of him.  Kris was in a car accident one icy November night in the middle of his college career.  The resulting injuries and surgeries following his crash have been life-altering.  The body he lives in has changed, but his mind is fully intact.

Kris lost the ability to open his mouth, so while I eat pizza during the game, Kris’ smoothie hangs from an IV bag.  Kris has double vision and a paralyzed left hand, so the best way he has found to communicate is through one-handed finger spelling.  Slowly, with great concentration, Kris begins to move his fingers on his working hand to spell out what he wants to say one careful letter at a time.  His long fingers labor intently to express his thoughts; his thumb doesn’t always want to participate.

Some days our communication is clear and I can understand his signs with ease.  Some days are harder and I need the help of a friend and a notepad.  Kris has a sign for “erasing the chalk board” so to speak, and individual signs for people in his life.  Mine kind of looks like “Live Long and Prosper” and I find it fitting. 

His words on Sunday are also teaching me but they’re not explaining the Hebrew language or filling space with sound.  Kris’ silent signs are helping me learn patience, presence, and the beautiful, undeniable truth that every human life has value.  Kris was once asked what he thinks about doing someday in heaven.  He began to sign to me, “I want to be heard.”  Kris, I can’t wait to listen. 

When the game ends, I drive home to get ready for another week.  As I finish my to-do list for the weekend and consider the week ahead, I pause to ponder the dichotomy of my friendships and consider the beauty of words and signs, silence and sound.  I thank God for my friends Steve and Kris; friends who have shared their words with me on Sunday.

I miss your blogs...

Have you stopped writing?  I looked back at him unsure how to respond.  I really liked your blog.  I had never really thought about people with disabilities before reading your posts.  I learned a lot.

Did something happen?  I’m no longer receiving any posts…She honestly thought there was a technical problem with her e-mail; the problem however, lay with the writer having nothing to send.

Did you give up on your blog?  My library friend looked at me with a knowing glance piercing through the rims of her glasses.  She had faithfully followed my blog for years, and now there was nothing to follow.

I’ve been grateful for these little exchanges over the past twelve months.  It’s encouraging to know that your words are missed when you take an unplanned hiatus from blogging.  It’s been a year since I’ve written a post, so I thought my first entry should include an explanation.

The answers to the above questions are:

No.

Yes.

Sort of…

No, I have not stopped writing.  I actually have been very busy writing, but nothing you would want to read in a blog post.  This summer I chained myself to the kitchen table and finished writing my doctoral dissertation on MN elementary school principals and their use of social media.  It was just as much work as writing my memoir, Walking with Tension. But, as the school year has unrolled, my research has found its application.  Alongside my new principal we are updating Facebook and Twitter almost daily, reaching parents, and making connections.  It’s been fun and rewarding to watch evolve because I am slowly starting to see my interest make its impact.

Yes, something did happen. Ten years ago United Cerebral Palsy (UCP) of Central MN helped me find an internship at the Library of Congress in Washington DC during my senior year of college.  Facebook was in its infancy, Twitter had yet to be invented, and I still owned a phone that looked like one of Star Trek’s communicators.  Blogs were emerging, and I was able to share my experiences at America’s Library with UCP on their site. Years later, after I had completed my first draft of my book, I wrote for them again from 2011 to 2014.  I became friends with the executive director who retired just months after my book came out. Their Website has since been redesigned and my blog posts have been archived.  UCP has been gracious to me over the years, and I am thankful.  Writing for an organization was a motivator and helped keep me accountable.

So, I kind of gave up on blogging because I got busy speaking, studying, teaching, writing….  I’ve wanted to write something else besides academic papers in the last year, but haven’t found the time, energy, or motivation.  The demands of working as full time as an elementary school library media specialist and part-time doctoral student can tap your writing well and leave you dry.  Words quickly become work instead of wonder; labor in place of love.

Yet, there has been this longing in me whose desire I can’t even name, but I think writing might have something to do with it.  It’s like a dear friend who you know you should call, but you just haven’t.

 

And then, this e-mail came from my mom early one morning, “…I miss your blogs.  Powerful messages came from them.”

Writing uncorks a person, letting the aged, rich wine of their soul spill forth onto the page.  I want to pick up my pen again. I want to put words on paper.  I want to be reflective and transparent, offering a view that includes faith, disability, and life.

So now, I have a question to ask you:

Will you be my reader?

I’m going to try to update my blog weekly, but it’s easier to stay motivated if I know there are people out there reading.  I also recently created a Facebook page where I want to post pictures when I speak, have book signings, or update my blog. 

I’m doing a double-feature this week, because I just couldn’t wait!  Please enjoy His Words on Sunday.