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Nights: Life With ALS

 

I’m here again tonight where I often find myself: sitting in the dark beside Steve’s bed, not ready to sleep but not willing to leave him. Nights are both hard and good.  They’re hard and then they’re good.

 

Around 10:30 every night, I give Steve his night meds – a pretty potent combination designed by hospice to help him sleep, keep him from choking and help with the pain he’s been experiencing in his shoulders. While they sink into his system, I refill the humidifier in his breathing machine, put his bed down, change the linens on his pillow and push the bed as far to the middle of the room as it will go. He rolls in thirty minutes later like clockwork and by this time, he can hardly keep his eyes from closing. I’m grateful for the meds that help him sleep more comfortably because sleep is his only escape.

 

I remove the neato cup holders from his wheelchair.  His caregiver, Crystal, devised this ingenious system for him to keep a spitting-cup always within reach.  He liked that so much that she added another one for the remote control. What man in this world wouldn’t want a carry-along caddy for his remote control?  Crystal and Steve are partners-in-crime, for sure. At night, I take the cup holders off so he can move his footrest in which makes for a much safer transfer from chair to bed.  How we discovered we needed a safer transfer system is a long, scary story that I’m not ready to retell just yet.  (If you’ve never worked with someone with ALS, the best way I can describe it is to say it’s like moving someone whose limbs are made of heavy jello.  It’s very awkward and I’ve yet to find a system that feels foolproof.)

 

With the footrest moved in, I take off  Steve’s neck brace and shirt and then we count down to three and I lift him out of the wheelchair, balancing him on shaking legs.  He can stand long enough to let me pivot him onto the bed. I breathe a silent sigh of relief every time he is safely on the bed.  He uses the suction machine and then I lift his head up from where it’s fallen against his chest and put the breathing mask over his face. Nearly every time I do it, I wonder how many times I’ve done it in the past few years. I wonder how many times he has dreaded another night with the mask and how much he longs for the days when he could sleep without so many constraints.

 

I turn on the breathing machine and it makes a soft, whirring noise that has become a comfort to me.  Steve lays down hard on the pillow – he has very little core control, so it’s always a pretty ugly drop from sitting to laying on his side, legs dangling lifeless over the side of the bed.  I lift his legs up and move his arms to an angle that is useful for him to gain some leverage. I place a hand warmer in his palm, put his hands together and then wrap them in a towel.  I cover him with several blankets and have learned to tuck them in well or he will wake me up soon, telling me he’s cold. Nights are cold without muscles. When he’s finally lying there, tucked in and masked-up, we wait.  I stand beside him while he decides what needs to happen with his head in order to be comfortable. He thinks about it for a bit (sometimes a pretty long bit, which is kind of annoying) and then tells me what to do.  “Lift my head up and pull the pillow toward you.”  Things like that.  He’s unable to shift his own head in any way, so he relies on others to do the adjusting for him. Sometimes  I get it right pretty quickly, sometimes we’ll go through seven or eight different positions before he feels ready to sleep.  Not gonna lie, this is one of my more frustrating responsibilities. When his head feels just right, he whispers, “Okay. I love you.”  Every night, that’s how it goes.  And the process used to be repeated several times a night, but now it only happens once or twice and, this week there were two nights when it didn’t happen at all.  He slept straight through from 11 to 9:00.  That hasn’t happened since…I can’t even remember when.  On the one hand, I’m glad he’s able to sleep.  On the other, I think it’s indicative of the progression of this disease and how exhausted he always is.

 

Once we’re in for the night, I pull the covers up over myself and my first thought is always, “We made it.”  We made it through another day. We earned a night of sleep. And we tried with all that remains to glorify God and to make His name famous. And maybe we failed a lot, but we  tried.

 

Sometimes I fall asleep before any other thoughts, and sometimes I lay awake for long hours, thinking of how life is now and how it will be. I wonder how much longer our nights will be like this.  If I’m honest, there’s not a single night when I don’t wonder if Steve will wake up in the morning.  The longer we go, the more I’m able to shelve the stuff I can’t solve, but sometimes it does race in all bossy-like, trying to steal my peace.

 

And nights like tonight, I write. I mostly write so that I’ll remember it down the road. I write to remember these dark, intimate moments when marriage looked so different than I ever dreamed. I write for a day when I’ll need to remember that I’m stronger than I think.  And I write so the rest of the world can understand the brutal realities of life with ALS.

 

That’s why I’m pushing publish on this post. Not so people will feel sorry for us, but so they will know the nature of the fight so many face, and that many of them face it alone or without the benefit of a caregiver who shows up in the morning.  I believe that every person with working arms and legs has something they could give to a person who has none. Every person could volunteer time to give a caregiver a break or give some money to help find a cure.  Maybe if enough of us tell our stories then we, the citizens of humanity, will be compelled to fight for change.

 

I believe.

 

With hope,

 

Bo

March 20, 2015 - 8:45 am

jacquelyn strayer - Thank you for publishing…

March 20, 2015 - 8:55 am

Angie White - Dearest Bo, I remember these kind of nights with Tim. I’ve been reading your book Beautiful Battlefields, and this is one of them. I was struck by one of the chapters when you wrote about how God prepared you for nights without Steve when he was out of town. I think the Lord did the same for me with Tim because he used to travel for work, and he loved to hunt.

In the nighttime battles with ALS, I used to get so frustrated at going through all of the long list of steps to try to get him comfortable and how long it took when I was so exhausted and all I really wanted was to drop down in a fetal position and cry, but we’d have to go through one more round to get him comfortable. Even when he had to give up sleeping in a bed and we’d go through all the steps of getting him comfortable in his chair, and doing that for him was all I could do, I know the only way we got through those nights was by God’s grace. And His mercies were new every morning. Great is His faithfulness, sweet sister in the struggle. Praying for you both.

March 20, 2015 - 11:39 am

Toni Harvey - My friend Suzanne (who you know from Bend) sent me your book after my brother was diagnosed in 2013. I put it down because it was too painful to read. We lost our brother last October, too quick and too young. At the ALS Remembrance service in San Francisco a few weeks ago I met Lucy Wedemeyer, a very sweet woman. While I wasn’t the caregiver for my brother I was thankful for his wife, a live in friend, and our mom, who did it all. It’s a horrible disease but as I mentioned during my sharing time at the service, since there is no cure at this time I’m glad he did not linger since his decline was so rapid.

I am truly grateful for the attention and funds that last summer’s ice bucket explosion brought. This isn’t a rare disease like everyone thinks, it’s just that the stricken are taken so quickly. I’m praying for a cure!

March 20, 2015 - 3:04 pm

Jane Lellman - I remember the late evening routine. Not knowing if our struggle would result in 10 minutes, 1 hour, or 3 hours of rest. Not knowing if he would wake in a panic unable to breath, or if I would wake in a panic listening for his next breath. May God continue to be a living presence in your lives as you walk this difficult path.

March 20, 2015 - 4:26 pm

Laurie - thank you for writing Bo in the midst of this hard place. It gives me strength to hear from your heart. I am experiencing all of this with my sweet mom. It’s a tough character building journey. It’s made me appreciate the small things like being able to blow my own nose or rolling over in bed and so much more.

Love and prayers to you both

March 20, 2015 - 5:21 pm

Heidi - Thank you for your vulnerability and willingness to share the reality of your nightly routine. It has given me so much perspective, so much to be thankful for. You are absolutely right that those of us with properly functioning limbs can give of ourselves to relieve a caretaker or offer someone else a hand. Thank you for challenging me today with your honesty and openness about the struggles Steve’s facing right now.

March 21, 2015 - 4:22 am

Adriel Booker - And this is exactly what love looks like.

Thank you for sharing, Bo. You both are teaching me so much. x

March 21, 2015 - 7:16 am

Linda David - Dear Bo,

I have had you and Steve on my heart and in my mind for the last 10 days so very strong. We walked this journey when our daughter-in-law had brain surgery and awakened as a paraplegic. It has been a five year journey but she now walks with a walker.
So, I appreciate the appeal for people with arms and legs to help those who do not. I know this is not the path you would have chosen but there are many of us out here who are lifting you up on a daily basis. You are loved!

March 21, 2015 - 4:59 pm

Jody Collins - I can’t lie, Bo, every time I read your posts, I wonder at the start, “Will this be the one? The one where she tells us Steve is gone?”
You were right to hit ‘publish’ because of these words,
“I believe that every person with working arms and legs has something they could give to a person who has none.”

We cared for my mother in law for four years and her most difficult days were in the last 6 weeks. That ended in January, and we are still transitioning.

There is so much we can give. And it is worth it.
Praying for you.

March 21, 2015 - 8:32 pm

Mom - Thanks, Bo, for your blog. I will read it again and agin,knowing it is from your heart,and being willing to share it with others. God has been, and is doing something very special in yours and Steve’s life. Tim alone will tell all that has been accomplished, and how you have been a glory to God. Love you both so very much, and pray for you, that you will endure to the end in triumph. Mom

March 22, 2015 - 12:28 am

Jess Lederman - I only wish I had your book when I was carrying for my wife during her battle with ALS! Beautiful Battlefields is a powerful work; the Holy Spirit is with you indeed. My thoughts are with you and Steve.

March 22, 2015 - 1:32 pm

Heather Sutter - Thank you for sharing, Bo. You both are in my prayers multiple times throught the day. May God’s strength continue to be your strength every moment.

March 23, 2015 - 5:37 am

Trudi - Sweet Bo-

When I read this post, my heart broke into a million pieces for you….not from pity, but from relating to every.word.you.typed.

I have walked your walk a thousand times….my mother was older (77) when she was diagnosed with ALS. Why she chose me, the youngest of her children as her primary care taker, I will never understand. But she did. And that is okay. I would do it again, ten thousand times ten thousand.

I had those same thoughts, fears, dreads, each night as I put my precious mother in bed. Would it be her last? Would she finally garner the sleep she needed? Would I get the sleep I needed before rising at 4:30 to begin my day getting ready for work? Oh LORD, why must we go through this?

Every time I touched her precious body, it brought pain to her and tears to my eyes….how much longer could she, could I go on? His strength is perfect….He knew.

She slipped away, while I was singing….peacefully, no more pain. But where do I go from here? How do I go on from here?

Mama has been living gloriously in her new body for three years now….no more pain, no more feeding tube, happily running the streets of gold waiting for me!

Beauty from ashes and hope from despair. I know better things are coming….prayers for strength and comfort dear one!

All Things Held Together

 

The first forty-five years of my life were marked by the discovery of hidden strength and abilities.   I learned bravery as I attempted a lot of new things, knowing I could always rebound and rebuild.

 

The past four years of my life have been marked by the discovery of the depths of my weakness and inabilities. My journal tells the story, with notes scrawled out like graffiti on the walls of a prison cell: I can’t do this.  It’s over my head. I’m not made like this.  I don’t know what I’m doing.  I’m not enough. I’m not enough.  I’m not enough (and seventeen variations on this thought.)

 

I have wondered out loud why God would trust a man with no muscles to a girl who is can’t even conquer the laundry.

 

I promise you this is not false humility or a thinly-veiled plea for you to tell me I’m awesome. This is reality. After 45 years of up-and-to-the-right, ALS brought me face-to-face with the endless array of things I cannot do and the many reasons Steve would have been better off marrying…anyone else.

 

I could fight these feelings with my resume or my good intentions or with the argument that many people aren’t good at this stuff and aren’t forced to find out. I probably have fought with all those things, and would continue to do so except they don’t work. What has worked is this verse on repeat in my brain and on my tongue.  This simple verse, quoted over and over, so my ears can hear it and my heart can take refuge in it.

 

He is before all things and all things are held together in Him. Colossians 1:17

 

He holds all things together. He holds Steve together.  He holds my children together. He holds my heart together when I think it’s splintering into sawdust. He is the first and last word and even when the storm spins outside my door, His love holds me together. Always and in all ways.

 

I hope you feel Him holding you today.

 

With hope,

 

Bo

 

 

 

March 18, 2015 - 9:01 am

Claudia Lee - He goes before us; He is behind us; He compasses us about. Sometimes the knowing of Him holding us together is all we have. Thanks for being real — praying for you!

March 18, 2015 - 10:10 am

Vangi - And yet…I just can’t help myself: you are awesome! :) But you’re not awesome because you are able to pull off something amazing. You’re awesome because you tell it like it is, from the heart, for real, and give us all the encouragement we need to put our hope in the One that counts. Love you, sweet cousin!

March 18, 2015 - 10:56 am

Molly - Oh yes, this is one of my favorite verses….I do feel Him holding me, in this crazy world that is falling apart. I do pray that you will feel Him holding you together and up, or even while you are down on your knees, or on your face….

March 18, 2015 - 1:53 pm

Brenda - Thank you for that verse! I am encouraged by this one as well … Psalm 121: 1-2
1 I lift up my eyes to the hills– where does my help come from? 2 My help comes from the LORD, the Maker of heaven and earth.

March 18, 2015 - 1:55 pm

Dianna Salciccioli - Just love you Bo…..just do.

March 18, 2015 - 2:18 pm

Nat Gitnes - Wow, did I “happen” on that at the right time. Tough times in my life right now, but like you, I am ABSOLUTELY that it’s all a part of His plan and I am held together even in the midst of deep sorrow, inabilities and failure. Without that promise, I, too, woule crumble. Just in case anyone thinks I have it all together…I am a mess, but I’m just stubborn enough to believe that He is able and organized, and will never let me go.

March 18, 2015 - 2:21 pm

Angie - Keep holding on to the One who is holding on to you both. Praying for you. Thank you for being real and transparent. When you are weak, He is strong.

March 18, 2015 - 4:49 pm

Melissa - After hearing you on Focus on the Family, I have read your posts regurally but never commented. Our situations are very different but your honesty to us, over your daily struggles, constantly mirrors mine. Four years ago, my Alzheimer’s mother in law, moved in with us. With 4 children still living at home, and grandchildren I long to have energy for, I too have cried to the Lord with feelings of inadequacies! It all drains me. Your blog has given me courage to face each day, knowing there are others who face harder battles than me. We are never alone! Praise God, He is always with us!!! I’m praying for you and Steve. Much love!

March 18, 2015 - 5:16 pm

Laura Black - Bo,
PLease know I pray for you daily. My husband has ALS. We are just starting this journey. I hang on to every word you write. You are such a role model to all who read your blog. If you can get through this, I know I can too. I want to have that verse tattooed on my wrist. It will be great encouragement as we face the challenges of the days to come. Thank you for being real. Thank you for sharing your journey so that God can use it to minister to me. You are my hero!!!!

Laura Black

March 19, 2015 - 9:00 am

Katrina Monaghan - Wow, Bo! Our battles are worlds apart and, really I think yours is much bigger, but this really hit home. I am in a season where I am fully convinced that is pure grace and the hand of God that is keeping me from a complete mental and emotional collapse. Thank you for being so real in your posts and thank you for sharing this scripture. One that I’ve read probably dozens of times. Isn’t it funny how some passaged can have little personal meaning until you reach a pivotal point in your life? I’ll have a death grip on this one from now on. Still praying for you all.

March 19, 2015 - 1:29 pm

Steffany Woolsey - “So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison.” (2 Cor. 4:16-17)

Hard Things

 

I have done grownup things this week.  Difficult, emotional, grownup things.  I have been putting them off for a long time, so they just sort of skulked around in the back hallways of my consciousness – not on the main stage, but not far enough away to let me ignore them entirely.

 

So, I did them.

 

And I could write a book about the thousand little ways my heart has been pulled and poked and loved and held through the stormy seas of these decisions. But I won’t.  Because some things can’t be explained without being cheapened. Some experiences are too precious and painful to lasso into words.  The only thing I really want to say about this week is that there was a moment when I felt the undeniable, incomparable smile of God.  AT me! Little, reluctant-to-grow-up me!

 

It was a hard week for sure, but I know He knows.  And I really think He might even be proud of me.

 

He’s proud of you, too.

 

I promise.

 

Do hard things,

 

Bo

March 6, 2015 - 8:26 am

Angila - :)

March 6, 2015 - 11:12 am

Barb craig - I love you Bo and Steve And fam you have all taught us bravery And trusting Christ in so many ways.

March 6, 2015 - 4:28 pm

Judy Renner - Bo dear, I am quite a bit older than you. I put many of your postings in an electronic file, saving them if or when the Lord brings another hard challenge in my life. At the age of my husband and I it could so easily be health issues. You have paved the way at far too young an age, for so many others, by generously sharing your heart on your journey. All I can say is thank you.

March 7, 2015 - 7:36 am

John Wagner - Bo, regardless of the issues, just know that our prayers surround the Stern famiy today, as always!

March 8, 2015 - 6:03 pm

cndy kaloger - thank you for doing hard things. we are suffering from hypercapnia. in other words bill’s carbon dioxide is poisoning him. we bravely stare this end of the ALS journey and I’m starting to do grown up things: investigate cremation. reality is like bumping my head into a steel wall. BUT God…is my focus or my brain is befuddled. what is the next step? How long? What will I do when he is not here. BUT God…will answer those questions when I get there.

March 9, 2015 - 8:41 am

Sally - Oh I know a little of these hard things. I’ve been a caregiver for my husband for 8 years. At age 62 he was diagnosed with Young Onset Alzheimer’s

I’m so encouraged by your Beautiful Battlefields book and the blog updates

“May God give you Spirit eyes to see the blessings in the battles, to hear His voice above all others. May He give you a heart of faith to cling to His promises instead of your fears” – Susie Larson

March 11, 2015 - 8:35 pm

Jewl - Redoing your home when you didn’t think you could, in the midst of emotional turmoil and people constantly going in and out to boot; . . . doing hard things too precious and painful to speak of here; . . . encouraging us to do hard things too . . . I’m proud of you for rising up, Bo! You give us courage too! Cheering for you! Praying for you too. You don’t walk this path alone. You’ll never walk alone. :) Bo, today you’re a mighty warrior. You’re also Steve’s tender companion–may your touch bring him some relief from pain . . . until Jesus rests him in His arms.

The Steve Factor

 

Twelve years ago, Steve and I did the most ridiculous thing ever and bought a giant fixer-upper of a house. It wouldn’t be crazy for most people to do it, but it was crazy for us because we are decidedly NOT fixer-upper sort of people.  I mean, we can paint and do surface stuff, but anything more complicated than that is beyond our ability and happiness.  We consistently discovered that he would rather be golfing and I would rather be reading and so most of our non-essential home improvement projects stalled out somewhere between Home Depot and the next good book.

 

In spite of our reluctance to tackle upgrades, we’ve always loved this house.  It has five big bedrooms and an office that I adore and a big lot on a noisy street which I also love (is there any music more beautiful than the sounds of a city waking up?)  As our children began to grow and move out, other people’s kids moved in.  Family dinners and noisy Movie Nights and birthday parties and baby showers all found homes in our big, un-pinteresty home.  It has been the joy of my life to be a place where people gather.

 

When Steve was diagnosed, my future in this house grew murky. Many reasons exist as to why, but one of the biggest was the feeling that I could never take care of this place on my own.  I began to look around at condos and bungalows and quickly realized I didn’t have the emotional fortitude to face that idea just yet.  The real estate market in Bend is ca-razy and I have plenty crazy on my plate right now. So I settled into the home that I love and told Jesus I would trust that He had gone before me and would be there when it was time to figure out my next step.

 

And then, something crazy happened. I took a leave of absence in December and somehow I found a latent fixer-upper gene in my DNA! Turns out, all that time of actually being in my house and in front of Pinterest inspired me to do a few projects.  And you know what happens when you do one project? Landslide. Each improvement makes the rest of the house look worse, so the list keeps growing.  And soon the projects were moving beyond my skill level, requiring actual…power tools.  For so many years, I’ve convinced myself I couldn’t do things like this. I’ve even convinced myself I couldn’t create a home that looked the way I wanted it to look. But I was wrong.  It has been a lot of work and a a lot of asking for favors and a lot of watching DIY videos on You Tube, but now I know I can do it.  I can figure things out when I need to!  I can use a power drill! I can brave the aisles of Home Depot without feeling like they’re going to kick me out!  So far we’ve redone our living room, dining room, one bathroom (with another in the works) and laundry room.  I love this house more than ever and I also love the things I’m learning.  And my point in this blog post (even though it’s taken me 600 words to get here) is: Steve is to blame.

 

Steve is to blame for this change even though he didn’t help with anything.  In spite of the fact that he is unable to lift a finger, he is the primary human force behind every brave thing I do.  For thirty years, he’s been second only to the Holy Spirit in helping me tackle the hardest things. It’s not that he says all the right things, it’s that he is the right thing.  His belief in me and his unfailingly gracious response to my (million!) failures through the years has made me believe that I really can try anything.  I probably can’t succeed at everything, but I sure can try it, and if I make a terrible mess of it and everyone in this world thinks I’m a loser, there is one person who’s convinced I’m not.  One man, who wouldn’t want to be with anyone other than me.  I mean, it’s astounding to me still.  And his love has been my secret weapon for as long as I can remember needing a secret weapon.

 

Here’s another thing I realized this week:  for the past four years, I’ve been working in fast forward – trying to do all the brave things while I have him here with me. This has included things like traveling to Europe, writing books, reaching out in new ways to people who need me, Christmas tree shopping, learning to love running, going away for a night by myself and – yep – becoming a fixer-upper.  These things have been possible because Steve is in the background telling me I’m smart enough and strong enough and scrappy enough to do hard things.  To keep moving.  To live large.  It’s amazing to me that a man in a wheelchair can be the driving force for a girl who has all her muscles. But it’s true – for me and for countless others who Steve has encouraged and believed in during his pilgrimage here on earth.

 

Of all the things in all this world that I treasure and wish I could keep forever, the way Steve has helped me escape the prison of fear is The Most. The biggest. The best gift I’ve ever been given. When I imagine life without it, I have to remind myself to breathe.  And all of that gaping breathlessness has to be immediately turned toward gratitude or I will drown in sorrow.  So I force my thoughts and words to thank our dear Father that I have Steve now and to thank Him that He will fill the gaps in the future.  Already, I have a handful of friends and family who uniquely possess the Gift of Steve.  They are encouraging and inspiring and, while they will never take his place, I see God putting them in place as pillars in my life that I can lean on.

 

If you are blessed to have someone in your life who you know would believe in you no matter what, take a minute today and thank God for that great gift.  And maybe take a minute and thank them, too. Sometimes we assume people know how heroic they are, but then we discover that they’re as filled with self-doubt as we are.  I think we’re created to need each other to be our best selves in the best possible way. I hope I help someone else fly someday.  One thing is certain: I’ve learned from the best.

 

With hope,

Bo

February 28, 2015 - 1:35 pm

Deborah - Bo, you just made me cry. This was a stunningly beautiful post. My heart thanks you. I needed to read this.

February 28, 2015 - 8:12 pm

Karma Gingrich - Really loved this Bo! You certainly have a gift with words…. Always look forward to the email alerting me of a new post on your blog! You guys are in our prayers.

March 5, 2015 - 9:00 pm

Heather Rains - You are inspiring! Your love is inspiring! I pray for you and your family often!

Thank you for sharing the realness of life, I know it’s not easy!

His grace is sufficient in every season.. blessings

March 6, 2015 - 8:35 am

Angila - Thank you, Joshua McCormack for never grimacing at all that has gone wrong in my life, or at the things I say because of them. Thank you for choosing to see who I really am in spite of it all. And thank you Bo for being a pillar of truth and immense bravery to both of us.

March 6, 2015 - 12:34 pm

Nancy Tinnin - I could not have said it better about my own amazing-gift-from-God-husband. He has helped me to bloom, to grow in confidence, willingness to try new things, and just to be my pillar. Praying for you and your family – but specifically for your heart. This… life you are living (that all of us are living – we just don’t all have the certainty that you see in front of you everyday) is beyond hard. And painful. And precious. And beautiful. And a perfect display of God’s amazing grace, love, strength and hope in action.

Thank you. For being brave and sharing so openly of your life & experiences.

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 - 11:29 am

Dixie - Hi Bo. I have been praying for you, Steve and your family for quite some time. I had the honor of praying for Steve when you came to our church in Mac, New Horizons. Since then, I include all of you regularly in my prayers.

My husband has had a quad. Bypass, aortic valve replacement and kidney transplant, with many side effects and other ongoing issues. His arteries are plugged again and there is nothing the docs can do because his veins and arteries are shrivelled. His new kidney is also going downhill. I tell you this simply to let you know I understand the life of total dependency on our Father God. Ralph, unlike Steve, can still function on his own so I do not know the pain, frustration and lonliness you are experiencing on that level.

I do know, however, that there are days that even living “one day at a time” is overwhelming and totally exhausting. I am so thankful for the ever-loving presence of God that gives us the ability to survive one more day and live on. Why hasn’t Steve been healed? Why does your mom continue to suffer with her back? I don’t know. No one on earth knows. We know sickness and disease were conquered by Jesus’ death and resurrection and we know countless people have been healed. Why some and not others? Great question and no ready answer.

I just know this one thing. Jesus loves me. He loves you, Steve and your family. Though He slay me, still will I trust Him. I don’t know what today will bring but I know He is with me all the way.

I have a friend who just lost her daughter. Cancer. It was a horrible blow for many people, including me. All we can do is continue to believe, trust God and have so much faith in Him that it defies logic and definition. I know that is what you do.

Strength and peace to you, Bo. So many people are standing with you. Keep on keepin’ on. We’re keeping on with you.

Praying for a better day!
Dixie

February 26, 2015 - 11:32 am

Eileen - Praying for you! Thank you for so very honestly opening up your lives and your journey to the rest of us.

February 26, 2015 - 1:04 pm

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

February 26, 2015 - 1:45 pm

Leigh - Just prayed for you, and will keep doing so. You and Steve are heading to the same destination, it just seems that you might be arriving at different times. And I believe you will each be walking hand in hand again one day (no more sorrow, no more pain.) Will keep praying for peace, strength, endurance and comfort for the journey. I pray God enfolds you and your family in His comforting hugs in the best way He can.

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 - 2:47 pm

Debbi - Bo, your willingness to be authentic and vulnerable is inspirational. I’m sorry for all you and your family are going through. Through your sharing I find hope.

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.

February 26, 2015 - 8:59 pm

Christine Duncan - You remain articulate and open, and when I read your heart there on the screen, I feel honoured to have heard your story, and how God keeps providing His goodness throughout.
It’s hard and inspiring all at once.
You can be sure you have our prayers and our hearts, even just screen to screen.

February 26, 2015 - 11:32 pm

Yvonne swarbrick - Hi bo ,
I am a carer of my hubby ray . He’s. Had MS for 30 yrs . I understand how hard it gets sometimes . Your words resonate with me , I go through all these emotions regularly . It’s so hard at times . But like you I know The Lord and would be dead without Him . I am feeling exhausted at the moment , weary of the illness . Have come away for a few days rest at a retreat house . I have been saying to The Lord this week “How long Lord ” I feel as if I can’t go on another minute when I get like this , and then He comes and gives me more grace . I have raged and screamed and cried many times . I have had many days of joy though as well , joy I never thought possible in my situation . Bless you , I would love to be in touch with you so we could encourage each other
Godbless you both Yvonne x

February 27, 2015 - 6:06 am

Chera - LOVE this, and you! Your path is yours and while others might have great intentions and thoughts for you, only God knows all the answers and how to lead you best.

Huge hugs, my friend! So proud of you!