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Where We Are; Where We’re Going

 

When I was young, my parents will tell you, I hated road trips.  Hated. Them. They did everything in their parental power to make them a cool experience (including, but not limited to, feeding us brown sugar cinnamon Pop Tarts) but their tricks only worked for so long. Which in my case was about ten minutes.  That’s when I would start asking “How long?” “How far?” “When will we get there?”  “When can we stop?” “Why did we ever leave home in the first place?”

 

I love home.

 

I hate long car trips.

 

This season of our lives is like the longest car trip I’ve ever been on.  I mean, really.  The longest. Ever.  And, as I mentioned in recently, it’s especially difficult to feel like Steve and I are in the same car but will arrive in different destinations.

 

Each morning, after I help Steve turn over and do the things that need to be done so he can gain a few more hours of sleep, I sit and soak in the quiet of the sunrise. I sometimes read my bible, but my capacity to focus on the amount and quality of sleep I’ve been getting is really limited right now.  So, instead I think.   And often what I think is: “How much farther?” And the answer is always: I don’t know. No one knows but God.  Sometimes I’m able to sink into the security of His sovereignty, but lots of times I fight against it. I whine and wonder and “Do You know how hard this is?” and “There are not enough pop tarts in all the world to make this road trip worth it.”  And when my words are exhausted and my emotions grow weary from the wild flailing, I land back at this truth: My Dad knows where we are, where we’re going and when we’ll get there.  He knows. And it’s in this truth alone that I am able to rest right now.  That’s not an overstatement: this truth alone.

 

Steve is having a rough week. He is in a lot of pain and we are trying to manage it the best we can. I won’t list all the obstacles we face in effective pain management, but they are many.  ALS is not typically a pain-producing disease – but the consequence of having no muscle to cushion bones and joints is first discomfort and stiffness, which has now become full-fledged, level 10 pain.  In addition, his breathing continues to weaken and grow more and more laborious. Sometimes I watch him and just wonder how he makes it through each day, but he is strong in ways I never dreamed.

 

I, on the other hand, have been having  a good week.  For no apparent reason, I feel secure and solid.  I feel held.  I am sticking close to this feeling because I don’t know how long it will last.  If you’re yelling at your computer screen right now that I should trust that this feeling can last ALL the time, I’m going to yell right back: seasons of sorrow and frustration happen. They’re part of the trip and I don’t think they are,  overall, connected to my level of faith.  I think they’re mostly connected to my love for my husband, extreme levels of exhaustion and my (in)ability to carry all the things that are in my world.  Even when they are connected to my level trust in God, they serve as an invitation for His comfort to meet me there (Matthew 5:4).  The good days don’t last forever, but neither do the rough days and this is a great hope to my little heart.

 

So, I guess, this is where we are. Hard week. Strong week. Faith. Frustration. Sorrow. Security. So many things swirling right now, but God is the God of them all. Of us all.

 

Thank you for your prayers and love. Thank you for sticking so close to us through the stormy seasons.  We love you beyond reason.

 

 

With hope,

 

Bo

February 26, 2015 - 10:01 am

Andi - Bo, you are an amazing person and I know you’ll immediately deny it, but you truly are. I feel very fortunate as I go through my own storms and struggles right now to have “found” your books, your site, and yes, your faith. Your honesty, humility, vulnerability, even your questions all make it easier to accept my own fights and my own questions. It may not always be such great comfort as you and Steve go through this journey, but you are being used in great ways by God. Random, unknown, striving hearts such as my own are finding your words and faith is being strengthened. I, among many, many others I’m sure, thank you. Prayers, my friend.

February 26, 2015 - 10:03 am

Dianna - Bo~ very moving and profound words. Your honestly and perspective always, always challenges and inspires me. Sets my perspective back where it should be. Our Father does know where we are and the length of the journey……Wow!

February 26, 2015 - 10:50 am

Jennie - Bo, your words are beautiful in the midst of pain. I wish I was near you to give you a hug and cry some with you. ALS is no picnic! One day Bo, one day sooner than it feels, we will be singing and dancing again with our Lord and Savior! Praise the Lord he came to rescue us from all of this pain and sorrow! Hugs to you and your family from the Epps!

February 26, 2015 - 11:12 am

Molly - Yes, Bo, you are strong, even when you don’t “feel” it and we are standing with you, especially in the times when you don’t feel it. Thanks for telling us the good and the hard……but you do know that you guys are making the same destination, right???? Just different time frame, but same destination!! :)
Love you so much and can’t wait for my turn to come hug your neck.

February 26, 2015 - 1:04 pm

Debbie - Bo, praying for you and your family. Sending love and hugs!

February 26, 2015 - 2:34 pm

Doug - Bo,

I love your messages. As one who has ALS, I hurt for my wife as I am sure Steve hurts for you. I love your honesty with the fears and the hardships. I absolutely love your faith and seeing how you work it our through fear and trembling. You and Steve encourage me in so many ways, thank you.

I did not choose this but am thankful God has allowed me to share our faith through this trial and to come across your blog. You are blazing a trail for us to follow and grow from.

Thank you and God Bless,
Doug

February 26, 2015 - 7:23 pm

Steffy - Bo, it is honestly so refreshing to read about the things you’re processing and the vulnerability with which you relate them. I feel so weary and so guilty in my wondering, “How much longer?” sometimes….but you remind me that we are on a course pointed Home and that it is natural and even beautiful to sometimes crane our necks to see if we can glimpse the home stretch. Oh, to hear the words “Welcome Home, good and faithful servant…” The thought of it for Steve makes all of the suffering with/in Christ richer. Blessings and God’s warm mantle of comfort pulled over you, my dear friends.

Because Valentine’s Day

It was Valentines Day 1984 when I found a red-enveloped card in my mailbox at Portland Bible College (which I shared with Bob Metcalf and Mami Masaka and Elisa Morelli and all my other M buddies). Steve and I had been flirting with flirting…dancing around the edges of dating, without really taking the plunge into the dangerous, “do you really wanna?” conversation. I had hinted with him that I felt not-quite-ready for a romantic relationship. Maybe I needed more time to grow up, to discover myself, to consider other options instead of racing in to date the boy from Illinois. In my heart was a desire to focus on my last semester of school and a stubborn determination to defy the Bible college Ring By Spring stereotype.

 

But then, this card. It was sweet and kind and tender. It was not at all cheesy or Hallmarky, but it ended on a fairly dramatic note and it was this: I will wait as long as it takes.

 

We didn’t go on a date that day or any day for another month. No kiss. No commitments. And yet, that Valentine’s Day changed the course of my life in the most remarkable way.

 

We got married on February 2 so Valentine’s Day has never been a huge deal for us. We’ve acknowledged it, but have focused more on making it fun for our kids. So, I really thought this year wouldn’t be weird for me. Given the magnitude of everything else in our lives right now, bemoaning not being able to go on a date on Valentine’s Day seems beyond silly, right?

 

And yet…

 

Here I am, up against this milestone of a memory and stuck beneath the weight of present suffering and wishing for all the world that I could relive just one Valentine’s Day. I love that everyone posts pictures of their fun dates and flowers on Facebook (I really do – we should always celebrate love!) but I’d be lying if I said it didn’t sting just a little. Truth-be-told, it’s been a hard week. Sadness has been pushing in around me like a flood and all the sandbagging in the world can’t keep it from seeping in a little.

 

Maybe next year I’ll have the energy to quiet the sadness and turn up the beauty. Maybe I’ll sink my teeth into doing something for people more sad than I. Perhaps I’ll write a blog post that answers all the questions about how to gracefully navigate the loving-and-losing dance.  Next year, I’m pretty sure I’ll have the answers to all of life’s problems (ha!), but this year is this year. My plan is to go for a run and thank God that I can. I have legs that work and a caregiver who takes wonderful care of Steve for a few hours on Saturdays. I will paint a bathroom and read a book and just generally keep…going. Because sometimes that’s what you’ve got. Sometimes, it’s the only plan. And if that’s the plan you’re living on this holiday-of-love, know that you’re not alone.

 

But as I keep on keeping on, I will be mindful that I am loved and have been for a very long, very beautiful time. And that’s what counts.

 

With hope,

 

Bo

February 14, 2015 - 10:33 am

Cheryl Hammond - Thank you for being so “real” Bo. I pray God will give you an extra measure of peace today.

February 14, 2015 - 10:46 am

Molly - Yes, Bo, you are a good example of NOT living by FEELINGS……and that is ALOT of what this holiday is about…the Hollywood idea of love and what it means….but you are living out the true meaning of love….making this holiday look much too cheap for the rest of us. We love you and keep admiring that deep love,an inspiration to us all. Keep fighting the good fight. Gods grace to the finish line.

February 14, 2015 - 9:49 pm

Cathy - Dear Bo,

I love you. You and Steve, both separately and together, have been the goodness of God in the land of the living, running the race set before you with such determined faith…for those of us privileged to be your surrounding cloud of witnesses. You have kept on keeping on, even in the teariest hardest moments.
In the middle of the night darkness is when I pray for you, knowing our Daddy God is holding you both so tenderly in his arms of love. And holding you up when the weariness comes. Keep holding on…

Tori’s mom

February 21, 2015 - 9:22 am

Liz - Dear Bo,
My heart hurts for you right now. I am so sorry that you are sad. I am praying that God will invade your heart with love and the endurance to keep going.

I discovered your blog and books after you spoke on Focus on the Family. My husband was diagnosed with ALS a few years ago. It has been tough as you know. My husband believes in Jesus, but his faith is nonexistent. We have been unable to walk through this battle together in faith. It makes me so sad, but God is working and I trust in him.

Daily I am confused, torn, and at His mercy. When this all started I ran to God because it was the only thing I knew to do. He has been so faithful through this whole situation. God has put people in my path to guide and encourage me along the way. I do at times look around at others and wonder why doesn’t he give us what they have. At those times I have to remember his purposes for my life are eternal. I hold on for the eternity that HE has promised us.

I love the story about Steve’s missionary parents in your most recent book. Having an 11 year old girl and a 14 year old boy, this story gives me hope. I pray that through this they will see me hold onto God for dear life. If they learn that one thing, to trust God in all things, this battle will have been worth it.

Thank you for your gift of writing. Your book is making me feel more normal. It is helping me to see God’s purposes and love for me and my family.

Praying for your family daily.

Much love,
Liz

Marriage and the Great Pearl Hunt

 

Next week Steve and I will celebrate our 30th anniversary.  It looks nothing like I thought it would, but I am learning that while expectations feel realer than real in my heart, they contain very little in the way of actual substance when life kicks in.  Expectations – especially those that deal with love and romance – are often airbrushed beyond recognition. And maybe that’s good.  Many of us would never bite the bullet and say the vows if we could see clearly into the future, and one thing I’m more certain of than I have ever been:  God loves marriage.  He loves happy marriages that shoot fireworks and fairytales all across the night sky.  And He loves hard marriages that dig deep and grow through faithful, stubborn, hanging-on-by-the-skin-of-our-teeth because we just can’t let go while there’s still a heartbeat determination. Please know and know it well: Steve and I have lived both. Sometimes we’ve lived both in the space of one day.

 

So, I can’t really remember what I thought my 30th anniversary would be like. Those dreamy days are pretty far in the rearview.  And it doesn’t matter anyway because we’re here and this is now.  This year of our life has not surprised God. He knew our 30th anniversary would be spent in the valley of the shadow of death. He knew our home would be filled with caregivers and hospice professionals and machines and meds that help Steve live as comfortably as he can in this season of the battle. He who lives outside time and space, knew how this moment on the timeline of our marriage would play out and He has already equipped us to face it with faith and not as victims of a cruel disease. (Brief aside: He knew what your marriage would look like right now, too.)

 

Last week Steve asked me what the traditional gift was for year 30.  I can’t remember him ever asking that before, so I immediately googled it and found: pearls.  Pearls are the gift for year 30.  As silly and commercial as the traditional lists of gifts are, this information has stuck with me because of this one verse:

 

The kingdom of heaven is like a jeweler on the lookout for the finest pearls. When he found a pearl more beautiful and valuable than any jewel he had ever seen, the jeweler sold all he had and bought that pearl, his pearl of great price.  Matthew 14:45

 

We who take the leap and say the words and promise our lives to another frail  human are also like jewelers on the lookout for the finest pearl. We believe that, though it will cost us everything, there is treasure inside that person…there is untold, unseen beauty and it will be worth everything we have to spend our lives finding it.  We know somewhere in the deep places that it won’t only be beauty, but we are willing to take the sad with the happy and the hard with the good, believing all the ledgers will balance in the end and we will find ourselves the proud owner of a pearl of great price.

 

This marriage, this life, these three decades have been the most difficult, exciting, amazing, rewarding, frustrating treasure hunt. Steve and I have both had to sift through a lot of junk in ourselves and each other.  We’ve had to fight and love hard.  I’m not proud of how we’ve done everything, but I am proud of this: we know the value of the pearl. In spite of how much the past four years have cost, I know that I am the big winner here. The treasure inside of Steve Stern shines more brightly than ever before. His love for me is my hidden portfolio, my offshore bank account, the cash buried under the mattresses.  Knowing him has made me richer, stronger, smarter and more secure. Serving him has made me softer, safer and more compassionate.  Loving him has made me happy.  And these things that have grown inside of me are treasure in themselves. I am better because of the battle and brilliance of marriage to the man of God’s dreams.  And I am thankful.

 

Happy 30th, Steve Stern.  I love you madly,

 

Bo

 

 

 

 

January 27, 2015 - 8:25 am

Teresa B. - Bo, Congratulations to you and Steve on your 30th! Last summer a friend and I were having a discussion about marriage. She talked about many of her coworkers were getting divorced and why wouldn’t they want to work on it? Only those persons know the reason but we said that we would do whatever it took to stay with our husbands because divorce is not an option. By keeping Christ in the forefront of our marriages, it helps keep us stronger. There are some who are continuously looking for the more rare and precious “pearl” that they don’t see what is right in front of them. I admire those that have stuck it out through thick and thin because they have the most precious pearls of all: Their life partner given to them by Jesus Christ.

January 27, 2015 - 8:27 am

Angie White - Sweet Bo & Steve, Tim and I celebrated our 30th in November 2013. We, too, recognized the symbolism of the pearl anniversary. The making of that pearl in our marriage fits so well.

This is quoted from a commentary on James by Kent
Hughes.
Making Pearls
Life on earth would not be worth much if
every source of tribulation were removed. Yet
most of us rebel against the things that irritate
us, and count as heavy loss what ought to be
rich gain. We are told that the oyster is
wiser; then when an irritating object, like a
bit of sand, gets under the mantle of his shell,
he begins covering it with the most precious
part of his being – and he fashions a pearl.
The irritation that it was causing is stopped
by encrusting it with the pearly formation.
Imagine that – a pearl is simply a victory over
tribulation.

Here’s to your victory, sweet brother and sister-in-Christ.
With love & prayers,
Angie
P.S. I got a beautiful pearl ring surrounded by 30 tiny diamonds and I got Tim a beautiful pearl-handled pocket knife for our 30th anniversary. And Tim sent me a bouquet of beautiful purple roses, my favorite color. Tiny treasures to remember the love and laughter of our life together before he went ahead of me through the pearly gates in 2014.

January 27, 2015 - 10:50 am

Annette - airbrushed beyond recognition…that’s good. We really, really love you.

January 27, 2015 - 8:53 pm

Rachel Hallett - Wow– THANK YOU for sharing this. My husband is a triple amputee, and I am his caregiver. I’m sure your challenges are more difficult than mine, but your post spoke the the depths of my soul. Marriage is absolutely hard, and one can only hope to have as much courage and strength as both you and your husband have had. YOU are a pearl; priceless and beautiful in every way! Keep it up! Happy Anniversary :)

January 27, 2015 - 10:12 pm

Jenny - Thank you for this beautiful post. You make me want to find the pearl within my own marriage. Praying for your lovely family.

January 28, 2015 - 4:47 am

m thomas - Hi Bo,

I heard you speaking on Focus on the Family this week. Thank you for sharing your story with us. You said a few things this morning that moved my spirit and the Holy Spirit nudged me to find your webpage. I intend to read all of your books because my family and I are currently in a battle. But after hearing your testimony, I told the Lord, God thank you because my situation could have been worse. But He is tugging at my heart right now and your story gave me hope. God is calling me and I am afraid. My family has been torn apart and in the midst of this storm, God said now is the time for you to step out on faith. I felt your heart when you said that through our suffering God is making something beautiful; and that suffering and joy can coexist together. Thank you for that! I am praying for you and your family. My grandmother passed away in 2005 from ALS. I watched her life change right before my eyes. She had been healthy all the days I knew her. All of a sudden she was diagnosed with ALS and we had to pull together as a family to care for her. I personally know what you and your family are going through. I pray that one day I will be able to personally speak with you. I want you to know that, I care about you and your family. I will pray every day without ceasing. Thank you for your obedience and strength. Please know, there are people out here that have been blessed by your obedience to share your experience with us. Thank you.

January 28, 2015 - 7:00 am

Jean Sheard - Greetings,

I just finished listening to your second day on Focus on the Family and I am rejoicing that you were able to do that program.

I am a volunteer in an ALS Clinic at the University of Virginia in Charlottesville, VA. My daughter is the OT in the Clinic and we both serve the Lord and our patients in that setting. What a blessing it was to hear how you have approached your caregiving to your husband by putting Christ at the center of your thoughts and actions. It is so hard for us when we are confronted with pa;tients and their families who have become so bitter because of their diagnosis and the sometimes long period of caregiving. To hear your honest explanation of how hard it is to serve your husband brought tears to my eyes – it gave me a better perspective of what our families go through – and yet you brought it all back to serving Jesus. Most of our patients and families are not in a right relationship with Christ, and I can see how it would be easy to become bitter. We do, on occasion, have a chaplan in Clinic, but most of them do not evidence regeneration. However, one of the chaplans was one of the best ones we have had (being a state run Clinic, at the university level, most are very liberal). I heard her one day visiiting with one of our patients who was going on about “having her house in order”, and the chaplan told her that was fine, but “what about living”. Your comment about making memories with your family was exactly what the chaplan was talking about. How I wish we could have opportunities to share the gospel with our families! For now, we are trusiing God to use our gifts and our compasions to testify of Jesus.

Thank you for your openness in sharing your journey with ALS. We have added you and your family to our prayer list. I pray God will bless your ministry in the ALS community.

Because of Christ,

Jean Sheard

January 28, 2015 - 9:14 am

judy - Thankyou so much for for sharing this. It is a precious gift to read today, our 37th anniversary. I completely agree with everything you said, it is all so true, and amazing that God gives it, costume designed for each marriage. Bless your hearts.

January 28, 2015 - 11:01 am

Sue Hughes - I just heard your story on Focus on the Family and wanted to share a site/link with you that I received from a friend from the 700 Club. My husband passed away with leukemia and for the last 2 years of his life, except when he was in the hospital, I gave him all of his care, also except for the wonderful Hospice people who cared for him. We had the same kind of experiences, that as he got sicker, all the problems we had been dealing with over the years just didn’t seem important and we grew much closer and our marriage became much more precious.

This report from 700 Club talks about how coconut oil has healed so many people of a variety of very serious and deadly conditions: Parkinson’s, diabetes, als, ms, alzheimers, etc. This has not been laboratory tested, but has worked for so many people. If someone had told me about it, I would have tried it for my husband. Here is the link to the report:

Alzheimer’s Doctors Taking Note of Coconut Oil

Video:
The most popular CBN News story of 2012 showed how coconut oil helps some Alzheimer’s patients. Now, some heavy-hitters in the medical community are noticing. <a …
http://www.cbn.com/tv/2079641150001

I will keep you in my prayers. I have found that you can actually feel the prayers of others. My heart breaks for you, but God is surely with you through this trial.

God Bless You-All,
Sue Hughes

January 28, 2015 - 1:05 pm

Sue Hughes - Bo and Steve, I got so busy telling you about the ‘cure’I heard about, that I forgot to wish you a Happy Anniversary. So Happy 30th. You know how to appreciate each other even through this very difficult time.

I wish I had journaled through losing my first husband (I’ve lost 2, but they aren’t lost when you know where they are.) He had surgery and we were making plans (don’t stop dreaming) for when he was home and well again, and POOF, he was gone. I couldn’t wrap my mind around him not coming home from the hospital. God gave us time together for him to help me through my grieving process, even though we had no idea he would be gone. I think the planning/dreaming helped a lot, but God gave me that peace that passes understanding. It is still as real to me today, nearly 29 years later, as it was then.

You are Pearls of Great Beauty. You do need to treasure these moments you have together. Time will pass and you can clean the house later or write that letter to a friend later. Everything else will keep, but you only have this special time NOW. God Bless You

January 28, 2015 - 3:18 pm

Pam - I just listened to your interview on Focus on the Family…..I immediately thought what a blessing it is that you both have that long goodbye…..and how most assuredly, the Lord will bless you in the days that follow with the memories of the special moments you shared. May peace permeate your souls in the days to come. Thank you for sharing!

January 28, 2015 - 6:08 pm

Mark and Susie Warren - My husband, Mark, and I heard you on Focus on the Family today. We don’t expect you to reply, for we know something of what your days and nights are like. Less than 1 year of marriage and Mark developed ALS. That was back in 1983. Exactly 5 years to the month, Mark went into respiratory arrest and having previously made the decision to use artificial ventilation, is still by my side today. We are into our 31st year with ALS, and 26 years of ventilator dependency. But, by God’s grace alone, we do experience the joy of God’s strength. Thank you for your testimony of love and devotion! Bless you both and your family.

January 28, 2015 - 7:48 pm

Karen MacKenzie - Yes pearls. It is through stress and irritation that they are made. I love to wear mine. Very appropriate for a 30th anniversary. May your time be filled with love, joy and peace.

January 29, 2015 - 7:27 am

Jim H - Hi Bo and Stern family,
I heard part of your story on yesterday’s Focus on the Family broadcast. I hope you hear might heart on this. If you have tried everything else, I have one suggestion where to look. Maybe you are familiar with Andrew Wommack? His ministry has recorded testimonies of modern day miracles of people who were sentenced to die by the best medical minds of our day, yet these people did not die but lived and recovered from what was not supposed to be recoverable from. I would encourage you to take a look, there are many testimonies at his site. But I would encourage you to take a look at this one:
http://www.awmi.net/extra/healing/niki

January 29, 2015 - 10:12 am

Lori Jackson - Happy Anniversary to you and Steve! I heard you on Focus and am encouraged to hear how God is faithful to reveal Himself to you; and so generous with His strength and mercy. He is a God who is near and not far away. I heard you say that Steve listens to worship music. It made me think of other things he could listen to. Have you discovered Sermonaudio.com? There are hundreds of sermons that he can hear there. My current favorites are messages by Sinclair Ferguson and Eric Alexander. Also, Librivox.com offers out-of-print books read by some good readers (and some not so good). Many of Andrew Murray’s wonderful books are read by excellent readers. Also G. Campbell Morgan has a couple. Hudson Taylor’s wonderful commentary on the Song of Solomon is also there. Also, Biblegateway.com provides audio versions of many translations of the Bible. I pray that he will find something in these sources to bless his mind and soul!

February 4, 2015 - 7:29 pm

Becky Aylor - Exhibit S

I don’t have words of wisdom, nor websites for hope. I simply want you to know you and your family are in the forefront of my mind and thoughts and that I pray for you so very often throughout my day. XOXO- B

February 5, 2015 - 9:01 am

Dani - Thanks for sharing your heart and being vulnerable. Your grace is mentoring me and I am grateful for it!

February 6, 2015 - 3:47 pm

Jewl - 30 years! What a gift to have had that. All gifts passed through the Potter’s hands! Thank you for standing by each other through the mountains and through the valleys, including this most shadowy one. Thank you for giving God the glory through riveting sunsets and while grasping for the rock through stormy seas, always reaching for the pearl in it all and in each other. Thank you for loving God and each other, even when so much of it looks different than you expected. We cheer for you both as the finish line draws near. With prayer.

February 11, 2015 - 2:07 pm

Bob Bolton - Congratulations to Steve and Bo as they celebrate 30 years of marriage. The strength, sacrifice, compassion, courage, commitment and love you have shown one another, and most especially during the past 3-4 years as you struggle with challenges most of us will never comprehend….is a testament to the GOD focused lives you have led, and been stewards for your family and thousands of others.
May GOD bless you and may his face shine upon you as you celebrate what HE “has brought together”.
Love you,
Bob

Dear Josiah

 

 

Dear Josiah,

 

On this, your 15th anniversary of life in our world, I have things to say to you.  I’m pretty sure that doesn’t surprise you, since you’ve been with me this long, so I’m going to launch right in.

 

Thing #1: Your life is not normal. It was very normal for awhile.  Maybe even boringly normal.  But at year 11, your life took a turn and you have lived every day since inside a fishbowl with sad faces looking in and sad voices asking, “So, how is your dad?” You have handled it brilliantly.  Valiantly.  Without complaint and nearly without a hitch. You’ve learned to respond to those questions with kindness, and without saying too much. You’ve learned to be in charge of things like mowing the lawn and hauling the garbage and scraping car windshields on frigid days.  You’ve learned to use a feeding tube and a suction machine and you’ve faithfully learned to care for the dad who used to care for you (and still does – but in other ways.) This is big and impressive, but it is not normal. And in the midst of all the absolutely-not-normal circumstances, come absurdly normal things like Spanish tests and field trips and the way your mom forgets to give you lunch money for so many days in a row. Sometimes the normal and the abnormal intersect at the strangest points and everything feels incongruent and upside down to me…but not to you.  You’ve learned to weather the waves as they roll in, you’ve learned to shift your weight and stay standing through it all.  It is a great skill, but it is not normal.

 

Thing #2:  Your life is not small.  It is giant. You are an overwhelmingly abundant gift to me, to our family, to your dad.  You are important to us in ways I can’t package into words well enough. I don’t know what I would do without you.  Your smile is real and ready. Your heart is tender as the day is long. You’ve learned compassion in the crucible of suffering and you will be an enormous gift to a grieving world.  Enormous.

 

Thing #3:  You are only just beginning.  You live in a home that is currently focused on endings.  But you are at the very start of all you will become and experience and dream and create and achieve.  The future stretches out wide in front of you, as big as the mountains that surround our city. You will launch and love just that big, because you are just beginning.

 

Thing #4: This is the big one.  The most important one. You are not a victim. Your days have been planned with purpose by the God who loves you more than life. Our pain does not take Him by surprise and our struggles do not sideline His strategy.  In fact, if we’ll let Him, I believe He will use the game-changing circumstances of life to work beyond our dreams.  The pain in your life has made you strong and sensitive.  It has made you one who will fight for justice and for the dream of His kingdom coming to our right-now, right-here world.  You are not a victim.

 

Thing #5: Near to my heart is this last Thing.  You are not fatherless. Sometimes throughout our journey, I’ve cried over the things you have not been able to experience with your dad, because I know how badly he’s wanted to be everything you need.  Sometimes, I’ve tried to step in and be that or to send in a substitute, but then I realize: you don’t need us to be your substitute dad because you have a real dad who loves you beyond reason. He can’t take you golfing, but he can (and does) spend long hours praying for your destiny and not very many sons can say that.  And you also have a Dad – the eternal One who shepherds your heart and directs your steps. You are not alone and will never be. Not ever.  Because you are not fatherless.

 

So, on this big and beautiful day, I celebrate your life – the fifteen years that you’ve packed away and the decades that are to come.  May His presence be your reward as you pursue Him with a vengeance.

 

I love you more than words and bacon,

 

Mom

January 13, 2015 - 9:25 am

Stacey Novak - Bo,
Thank you for being so transparent and loving. I long to meet you one day and hug you and thank you for the blogs you’ve shared that have hit home for our family, but also show us that we are not alone in our struggle ALS and teenagers.

Happy birthday, Josiah!! You have incredible parents!

May God bless you all mightily, above and beyond what you can ever think or imagine!

Stacey Novak

January 13, 2015 - 6:15 pm

harriet hetzel (hh) - Happy Birthday Josiah! Your moms words are so true. I am truly touched by what she said. Our children mean more to us than anything on this earth. Our son and 2 daughters are in that fish bowl with you- trying to live a ‘normal’ life. Our ALS battle is entering the sixth year and our son is now 18. His name is Douglas. At times- I feel the hurt and pain for you and him the most. Being the ‘only boy’ I am sure you can relate. I know Douglas’ dad wanted to teach him the greatest game on earth and play golf with him, too. He wanted to hug him when he got his drivers license and stand up for him when he marries, but we know now that our lives have taken a different path. Your mom said- you aren’t fatherless- and neither is Douglas. You both have a wonderful, loving man in that fishbowl with you. I hope you have a great year full of exciting and happy events. Hang in there Josiah. May God bless you all. Harriet Hetzel

January 13, 2015 - 7:58 pm

Susan - Beautiful

January 13, 2015 - 8:08 pm

jacquelyn strayer - I am privileged to live in your town, go to your church,to read your books,to send your books to my friends who are struggling, to see you here and there. To hear you say “Hello” to me, to be inspired by your courage. I am privileged.

January 14, 2015 - 6:31 am

terri - Happy 15th Birthday Josiah!
Thank you Bo for sharing your heart with us. What a wonderful letter to your son, it really touched my heart. Words can’t express how this changed me today.
God Bless you all.

January 14, 2015 - 9:20 pm

Jewl - Hi, Josiah, birthday guy. I love your name. It’s weird to get a birthday greeting from a stranger, and not only that, but one as far away as TN, and with the kicker being that I’m an old mom, but your mom already told you you’re not living a normal life, so this fits after all ; ). Interestingly enough, my daughter turns 16 on the 16th of this month, and since it’s so big and so golden, we’re thinking lots about birthdays around here. She’s sad to leave 15. For bigger reasons, you’re probably sad to leave 14. I just wanted to say that you’re going to make it through this. That’s all. And to your classmates, I’ve been where Josiah is. I recommend you give your bud a place to talk about his dad and death and dying and sad … or to not talk and just be do and be as always.

January 17, 2015 - 11:49 pm

Joni Thurber - Dear Bo,

I love that you pointed out to not only Josiah, but to everyone reading, that Josiah is not fatherless. We know he is loved by his heavenly father. But on earth, the foundation that Steve has laid for Josiah is stronger than many foundations of Josiah’s peers. Boys and girls, young men and young women who yearn for their fathers fully capable with strong bodies and minds, but have not built the foundation that will sustain their children. These children have a heavenly father who intervenes. But for many, an earthly father of strength is a wish on a star. Josiah is fortunate for the gift of your husband, a father, who the minute Josiah was born, began building a foundation, and with his prayers, he continues to give Josiah something that will not crumble. Your loss is beyond words. The gift Steve gave your children is also beyond words. Blessings,
Joni

So Here is New

 

I have started and stopped and deleted posts about a million times in the past few weeks.  I meant to write about our Christmas and how I spent my month off of work, about Steve and his journey, about my shiny, new in-development GRANDBABY (eek!)…so many things.  But words felt slippery and pale. Any attempt to rope them together and form complete, cogent sentences was – and I do not overstate this – absolutely dismal. Not just in terms of the writing (though the writing was bad, bad, bad), but also in terms of how I felt as I trudged through the tunnel of emotions and angst that seems to lead from where I am right now to anywhere I want to go. Want to remember something good from the past?  Gotta go through the tunnel.  Attempting to dream about the future?  Tunnel.  Figuring out how to manage life in the here-and-now? Well, I think that part actually is the tunnel.

 

 

I’m not apologizing for not writing and I know nobody is wringing their hands, wondering what in the world is happening in my life. But I sometimes wish I was able to record this season more consistently.  Not for you, but for me.  For my family.  For a day when it won’t be as painful to look at.  But the fact remains, I didn’t. Not in journals.  Not on napkins.  Not on this blog.  There was virtually no writing in December.

 

 

Quick recap: Christmas was good. My time off has been…hard. New Year’s was…especially hard.  I’ve always loved the newness of New Year’s.  I love setting goals and dreaming dreams and making new, fresh systems which I probably won’t sustain, but it’s fun to create them. I’m a dreamer/planner by nature and I LOVE fresh starts.  Mondays and New Year’s were made for girls like me.

 

 

But this year it was sort of awful because this year, it’s just been really hard to dream. Reasons abound.  You can probably figure them out even better than I can, but I’ve felt very stuck in a land with no dreaming.  Right now, my family feels wedged in a narrow passageway between earth and heaven, unable to move forward or go back. People – countless people – encourage me to absorb every moment, to savor this time and I appreciate the sentiment, but I’m telling you: it’s harder than it seems.  It’s like labor. You know it’s leading to something so beautiful – fresh, new life – and you even know somewhere in your pain-addled mind that the process itself is beautiful, but had someone told me to relish every moment of those contractions I would have punched them in the eye.  Watching my beloved suffer as he is right now is…um, wow, I have no words. Watching his body betray him as he desperately tries to hold onto the things that make him real and alive and Steve is more painful than I have ever imagined anything could be. That’s not to minimize the grace that God has given us to endure this – it’s there and I can feel it –  but I would be lying if I told you there were no moments when I feared the grace would run out before the day was done. Many days, I fear it will run out before the day has begun.  Every  night, we are exhausted and thankful that we made it through another day.  Every morning, I beg for strength for the hours ahead. No drama here, I promise, just real talk from our real life.

 

 

All that to say: I felt fairly stumped as I attempted to establish some New Year’s goals or resolutions.  I read several blog posts from people I respect, some convincing me I should achieve more in 2015, and others telling me to do less and be more. Some inspired new fitness goals.  Some laughed calorie and carb counting off the to-do list.  None of them were wrong, but none of them were me. What did happen in reading other people’s resolutions, though, is a determination inside of me to flat-out refuse to live a life with no dreams.  Without vision, we die. We fall asleep with our eyes wide open.

 

So, I guess my first resolution of 2015 is simply the decision to dream again.  To look through the tunnel and into the future, understanding it is murky and muddled, but it is still mine and I am still alive and life is for living.  I’ve opened the door to vision that seems small (watching all of Friday Night Lights with Steve) and vision that seems big and impossible (spending some extended writing time in Italy).  I’m dreaming through prayer and my pinterest boards.  I’m dreaming with trusted friends who hold my heart and secrets safe.  And I’m dreaming with Steve, who knows me better than anyone and understands my need to toss some lifelines out beyond our stormy seas and onto the unnamed, unknown shoreline.  He more than anyone is able to help me weed out the flimsy, flighty stuff that sparkles on the surface but produces little and get through to the meaty and meaningful stuff that he knows will produce something eternal and deeply satisfying.  I am soaking in his wisdom and so thankful that I have it while I look out into the great unknown.

 

That’s my update. It’s not pretty, but it’s real.

 

With hope,

 

Bo

 

 

January 6, 2015 - 12:40 pm

Karen - “It’s not pretty” umm, well, maybe it’s not pretty but for sure it is gorgeous, brilliant, lovely. Every word you write fills the rest of us with hope.

Thank you.

January 6, 2015 - 12:45 pm

Pam Darling - You are such an inspiration my friend!

January 6, 2015 - 12:46 pm

Jenny - More beautiful than you can see right now. So, so, beautiful.

I will be praying for your year and for your dreams. Thank you for sharing. Always, thank you.

January 6, 2015 - 1:06 pm

Vangi - And…actually, I was just thinking last night…”I haven’t seen a post from Bo in a bit…” as I wondered if your nights were still sleepless and what kind of gut-wrenching road (or, hey, tunnel) you and yours are walking through in the latest part of the journey. Sigh. I stand with you in the truth of all the good that is God-breathed in the midst of this, while also longing for the day that it is finished. I have every confidence that ALS has not, and never will, win the day in the Stern household. You are dealing blow after blow to its arrogant, evil head. I’ve found, through being close to you guys, that I love to be friends with winners. Love you, my sister!

January 6, 2015 - 1:31 pm

Lucie - I may not have been wringing my hands, but I have wondered about you and your family every day since your last post, and am glad you felt able to write again. No update ever has to be pretty; we just want to know how you are – good, bad, or ugly. Thankful that you are also still able to dream. Your comment about Mondays and New Years being made for girls like you made me smile, as I am much the same way. Wish I had some wise words for you, but even if I had, you have probably heard them already from someone much wiser, or that I lived closer and knew you personally and could somehow help in a tangible way. I look forward to whatever you share, whenever you share, however you share.

January 6, 2015 - 2:27 pm

Mary Ward - Dear Bo, Thank you for sharing your heart. My husband also has ALS. I can feel your heart in your words. Thank you for sharing with us.

January 6, 2015 - 3:01 pm

Jovi - Thank you for your words. I lost my sister to ALS on the 28th of December. It’s so hard to recognize what types of feelings I have. I wish us both dreams and nourished souls.

January 6, 2015 - 3:07 pm

Linda Gregoire - This I the real Bo , vulnerable and honest, so when you said it wasn’t pretty, I guess I would agree…. . The ALS journey is ugly most of the time , mixed with some amazing and beautiful moments you know are gifts from God. . To me it was beautiful that you are open and honest about the most difficult journey one family can face. Your love for each other is something to behold! Gods grace will always be sufficient , even when we fear it may not be. God knows what you need, He will never leave you without His love , comfort and peace. I’m sure that feels hard to believe sometimes( I know it is for me, sometimes) but an elderly friend , she is 90 , she lost her husband 10 years ago , she said, “you have not arrived at the moment you are fearing, when you get there, His grace will meet you” she knows, she’s been there, I trust her, I love you, I just had to share that and hope it settles in your heart. Love you both and always praying!!

January 6, 2015 - 3:08 pm

Mary Ward - After I finished reading this piece with tears in my eyes I looked out my office window and witnessed a beautiful sunset. It felt like God affirming his presence. Photography is my thing, it is what I do when I can’t find words. I’d love for you to have these two photographs. If you would like them please email me at maryhahnward@gmail.com and I will send them to you.

January 6, 2015 - 5:33 pm

Fred - Bo, I love your how real & transparent you are. You & Steve are an inspiration & some pretty amazing really models, on how God’s Grace is fresh & renewed daily. Thank you for being real. Thank you for being you.
One of my favorite memories of you guys, is when you & Steve sang Trina’s & my song(Everything I Do by Bryan Adams) in our wedding 17 years ago. It makes smile & even shed a few years that you two were a big part of our special day. Much love & respect for you guys.

January 6, 2015 - 6:41 pm

Theresa - Hi – I don’t know a single person with ALS and my main exposure to it has been watching the recent film You’re Not You but I happened to stumble upon your blog this evening deep in thought about some of my own issues…. I ended up finding inspiration in an unexpected place as I moved from a blog post you wrote about 6 months ago to the year before and then back to today. And it seemed so appropriate that your post was so new. I think my favorite part about your writing is that you do keep it real. This is something so personal, yet you are sharing it with the world. Thank you.

January 6, 2015 - 7:13 pm

Angie White - Dearest Bo & Steve, thank you for opening up a window into your heart. I hope you can both be in the moments as they come. I pray that writing is as healing for you as the reading is for those of us who have hurt through the same or similar tunnels. Asking God to continue to bless your whole family with His gentle strength.

January 6, 2015 - 9:04 pm

Michaela Evanow - That’s a perfect way of putting it. Labor. Contractions. You can’t enjoy the contractions because they are too painful in the moment. Whoa. Such revelation there, Bo. Thank you for your real. Thinking of you and praying so much.

January 6, 2015 - 10:22 pm

Gina W. - I’m blessed to pray for you and yours. God is with you; may His Presence give you strength for the moment.

January 7, 2015 - 12:30 am

Tamera Gardner - This may not come out right but I often feel like other women are super-Christian-mom-wives that float through trials and tribulations with hands folded and Mona Lisa smiles while teaching Sunday school, volunteering at the soup kitchen, home schooling 6 wonderful children while successfully breast feeding twins. I appreciate your raw honesty and vulnerability. Thank you.

January 7, 2015 - 10:26 am

Jacqueline Kennemer - Dearest Bo.

Today was the first time I ever read about your world. I am a Portland girl too. I am caregiving for my sweet Mom who has Alzheimers and my Father who has Parkinsons. One of my best friends was just given 6 weeks to live, she has advanced COPD and her breathing is getting labored. Your blog has been the first that truly grabbed me and held my attention so powerfully. You understand the journey of life and death. Not unlike the struggle of a butterfly before it’s birth into the world. The wrestling with what is and how these terrible and beautiful moments are shaping us, making us stronger. I want to thank you for writing. I have felt so lost lately. My heart feels vanquished. I am a dreamer and a creator and that part of me has gone missing over the past 6 months. I know she is there but I don’t have the passion to call her up right now. So, I want to thank you for being real and raw and available. Sometimes I feel so lonely. My faith is strong but my heart is weary. I hope you don’t mind if I lean on your wisdom through this season. I believe God created a divine appointment for me today, reading about “Oatmeal”. You are a breath of fresh air and hope. Be blessed in the coming season as you love deeply.

January 7, 2015 - 7:47 pm

Joyce Hoffman - Bo,Since the initial diagnosis I have prayed for your family from my perspective but now because of your honesty I can pray for what I hear from your heart.
Father, guide this precious servant family through a tunnel fortified with love- your perfect love and the love of all of us who know them. Give each of their family members a secure vision to build on each day. Vision when the day is hard and when they need to find the greater strength to rest in you. Record in the corners of their minds a journal of the precious moments spent -not translated with the written word but the still small voice of the Holy Spirit for the day when they will need them. Finally Father,let all of their trusted friends and loved ones be amazing listeners and lovers of their hearts. Love you Abba, Amen

January 8, 2015 - 11:09 pm

Jewl - I hear your tunnel imagry, and I know it must be as apt as words can be. I’m from W. Michigan. I picture Tunnel Park. Small, not a park to boast about. Wretched graffiti words hang on the walls. The tunnel is dark, as tunnels are. But waiting at the “other entrance” are blonde sands drifted into wave ridges merging right into blue: long and really wide with hues of deep. Lake Michigan. They call it the pure state, but we know only Steve will experience true purity once he exits here and enters there. But you too will find peace even as the waves roll in. You will feel the sun on your face, you will build castles and play with your grandchild(ren!), and you will tell story after beautiful story of the legacy they received from a wonderful, wise, and loving man God called home–not too early, not too late . . . , and how no tunnel is so dark that you cannot find The Lamp for your feet.

January 9, 2015 - 7:28 am

Sheri - Bo, your words are cutting like a butter knife through butter, right down to the surface where all things are so real. Thank you for letting us into your truth – wrestled out each and every day on this suffering journey. And, thank you for reminding us that the death of “what is” always leads to the new life of “what is to come,” and that God gifted you with eyes to see that promise in this new year.

January 9, 2015 - 9:25 am

Kathryn Vai - Just wanted you to know that you and your beautiful family are in my prayers daily. HUGE virtual hugs.

January 9, 2015 - 9:51 am

Eleanor Stern - Sigh! Bo, your blog was absolutely awesome. i could be going through the same thing, but wouldn’t be able to tell it like you do. Your way of saying things makes us understand totally what you are going through, as well as the family. I don’t have much to say, except i wish that there was some way that I could change things. But, what I can do best, is to pray and believe that it won’t last much longer, one way or the other. i leave Kenya the night of the 12th, and will call you after I get to Florida. Sue and Jerry will pick me up in Florida. I will be there for awhile. At that point, we can talk about whether I should come out to see you all. My time here has been wonderful. I have learned to appreciate what everyone does here at KKV. So until I talk to you in the States, I will be praying for you all the time. Give my love and hugs to Steve. Love you much, much, much! Mom