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What We Got For the Guy Who Has Everything

 

If you tell me your husband is hard to buy gifts for, I will have zero sympathy.  I’ve honestly never experienced anything like trying to choose something appropriate for a man on hospice who can’t eat, drink or leave the house.  Videos were good for awhile, but now we mostly use Netflix and apple TV, so DVDs tend to sit on a shelf and never get opened.  This year, though, is a special birthday.  Steve fought hard for this birthday and I didn’t want to let it slide by without presents.  So, we bought ‘em – we just didn’t buy them for Steve.  Instead, we bought them in honor of Steve. The only guideline I gave the kids was to spend money on something or someone they felt Steve would want to bless.  Last night , after reading a few of the (hundreds!) of emails that came in for him (thank you!), we gathered around him and gave him his gifts:

 

Corey, Whitney and Grey gave money to a young couple’s dream of becoming missionaries.  Steve was a missionary kid in Africa for the first part of his life, so this is dear to his heart.

 

Casey supported some friends’ project to provide school supplies for needy children.  We loved how this gift touched so many layers of people.

 

Tessie gave money to Charity Water (one of my favorite organizations out there), and in Steve’s honor helped provide clean water for 2,000 people.

 

Victoria researched and found an organization working to empower women in third world countries and they have a strong presence in Nigeria (where Steve grew up.)  One of the things I love about Steve Stern the very most is the way he believes in women. Perfect gift.

 

Josiah gave money to Sparrow Clubs – an organization here in our community that provides help to children with profound medical needs, and uses public schools to do it.  Man, I love Sparrow and love that Joe thought of them.

 

Tess’ boyfriend, David, chose to bless a friend who needed help with his tuition.  Exactly the kind of thing Steve would have done because he’s just a dad like that.

 

As for me, I knew right away what I wanted to do.  When Steve can’t sleep, he lays in bed and prays.  He prays for us, for our family, for all kinds of personal things – but he has also spent long hours praying about the situation in the middle east and for the victims of ISIS.  It’s deep in his heart.  After researching several organizations, I gave to Samaritan’s Purse, earmarking my money to go towards displaced Kurds who have fled the violence in their region. In doing so, I felt like I was putting feet to Steve’s prayers and it was so fun.  And I didn’t have to wrap it!

 

As we each told him what we had done his honor, it struck me that this is much like Steve’s life.  Though he feels so stuck in his chair and his house all day, the effect of his faith and compassion ripple out all around him through those who know and love him.   After gift-giving, we watched American Idol with him, all stuffed together in the room where he spends all his waking moments, critiquing the Idol voices and outfits and just generally making it really hard for him to hear what was happening on his show.  It truly ended up being the best birthday ever.

 

 

With hope,

 

Bo

April 23, 2015 - 7:12 am

Kathy Field - What an amazing day, what an amazing family, what an amazing man, what an amazing way to honor him!!!!!

April 23, 2015 - 7:16 am

Kim - What a beautiful way to honor your hubby!

April 23, 2015 - 7:41 am

kathy - Such an example of the love of God flows from you all. The Man, the Woman, and the children, I hear singing in the heavens. God bless you all.

April 23, 2015 - 8:15 am

Deb Garber - Bless you, bless you , bless you is all I can say through my tears. Hugs to you all!!! ~Deb~

April 23, 2015 - 9:05 am

Teresa B - Beautiful! What a birthday to remember! Love you all and all you selflessness. Just awesome :)

April 23, 2015 - 9:27 am

Lori - Thank you Bo for sharing your family’s journey.
I am taking the journey of ALS with my mom right now.
Your Blog and book have been an amazing inspiration.

April 23, 2015 - 9:30 am

Michelle Watson - Oh Bo. What a beautiful way to once again go the real deep place and create a birthday for Steve that celebrated him, celebrated the God he loves, celebrated life, celebrated giving, celebrated people, celebrated the intangible because that’s all that lasts, and on it goes. Thank you once again for teaching me about how to embrace life and death in meaningful ways right to the very end. I love you and your family so much!

April 23, 2015 - 1:50 pm

Shawn - So blessed by this post. Happy birthday, Steve. What amazing plans and purposes God still has for you!

April 23, 2015 - 4:40 pm

Brandon Wyllie - Awesome, powerful and inspirational story! Thanks for taking the time to share about this celebration. Happy birthday, Steve! -Brandon Wyllie

April 23, 2015 - 5:06 pm

Doug - God has really blessed Steve with a wonderful family and God has blessed many through you, Bo, and how you are honest with your life through this trial. You are helping me through my days living with ALS.

Thank you for your love for Christ.

April 24, 2015 - 11:06 am

Vangi - Crying for the beauty!!

Sea of Sorrow

 

When I was little, we would sometimes travel to the Oregon Coast on mini vacations. I both love and fear the ocean so it took me awhile to get brave enough to put my toes in it. My parents also fear the power of the crazy coastal sneaker waves and would always start to panic when the tide rolled in. Slowly it came. Wave by wave, moving closer and closer to toes…ankles…knees.  That’s when it was time to move away from the water and into the safety of the house.  The saddest moment of Oregon Coast vacations was high tide on the very last day. That’s when I knew: our time here is nearly done.

 

Sorrow is so much like the tides. It rolls in all stealthy and, little-by-little, starts to nip at your toes.  In the past few months, I’ve tried hard to outrun it.  I run to Home Depot or I run the River Trail and it works for awhile, but today, I feel the tide edging up into my now, pushing its way into all the moments of life. Waking. Sleeping. Hoping. Singing. Shopping. Any moment, it seems, is at risk for a sneaker wave – a gut punch of sorrow so intense I sometimes feel doubled over by it. The problem now is, the tide is too close to outrun.

 

ALS is also like the tides. It sneaks in slowly at first, attacking and receding, almost like it can’t make up its mind whether it wants you or not. Steadily, though, you realize: here comes high tide. 

 

So, here we are. Four years post-diagnosis and it seems the water is nearly up to our knees. We could run, but Steve cannot, so we will stand with him on the shoreline as long as we can.  We will surround him and guard him and keep him as safe as we can until the water carries him away to a new and beautiful life. We will try with everything we have to let go gracefully.  We will worship. We will give thanks. We will weep. We will dream of the day when we are together again.

 

We will try to be brave, but more than that – we will trust. We will trust that God is real and God is good.  We will trust in His sovereignty and strategy. We will sink our hearts deep in all we know as truth: that our Great Father is living in a committed, covenant relationship with Steve Stern and He will not, will not, will not leave him alone or unloved.  Not now, not ever.

 

If we trust Him, we have everything.

 

And we do. We trust Him.

 

With hope,

 

Bo

 

 

April 21, 2015 - 10:15 am

KC - <3

April 21, 2015 - 10:23 am

Pam - Beautiful and heartbreaking. I love you.

April 21, 2015 - 11:35 am

Jean Nelsen - I get it. Been there. Praying healing and comfort and a sense of His presence like you’ve never know before. Love you.

April 21, 2015 - 11:56 am

kathy halley - May the arms that so tightly have held you both together give you the strength and compassion to be totally consumed in his presence. Love and many cyber hugs to you both.

April 21, 2015 - 12:04 pm

Molly - Sniff, sniff……one of yor best……no words…….I will never look at the tides the same again. Standing with you are the water rises.

April 21, 2015 - 12:07 pm

Kathy Gilbert - waves of mercy…
waves of grace…
Looking to God for you. I am holding the Sterns up to Him. I’m feeling love for you and sending support from far away, knowing God is so very near to you.

Thank you for sharing, Bo.
I’m saying my prayers and sending you a hug.

April 21, 2015 - 1:18 pm

Beth Yancey - Thank you so much Bo. This spoke truth to just where I am today as my dear Daddy is about to be used to the place the rest of us can’t yet go to be with his Savior. Bless you and your family as you carry your sorrow as a sacred trust!

April 21, 2015 - 1:18 pm

Beth Yancey - Thank you so much Bo. This spoke truth to just where I am today as my dear Daddy is about to be ushered to the place the rest of us can’t yet go to be with his Savior. Bless you and your family as you carry your sorrow as a sacred trust!

April 21, 2015 - 1:46 pm

Terry - God Bless you and your family sweet Bo. I walked the path with my dear brother who went home Sept 29. I am forever changed through it by a God who kept my head above the waves when the flesh could no longer. He is able to love us most when we are in valley. I continue to pray for you and your beautiful family.

April 21, 2015 - 1:51 pm

Jody Collins - Bo, I remember sitting next to Steve last year at The Well Conference. Gwen Mc introduced us and he was kind and funny, which amazed me.
I’ve watched and read and prayed all these months along with you and knew the day would come.

All I can do is type these words with tears rolling down my face and know that the next adventure will begin for you after Steve walks through that door.

Here’s to grace to carry you over the threshhold.

April 21, 2015 - 2:20 pm

Julie - I certainly wish things were different. I’m heart broken with you girl. You can rest on this
YOU ARE NEVER ALONE.

Blessed is the one who trusts in the Lord; whose confidence is in him. Jeremiah 17:7

April 21, 2015 - 6:01 pm

Mike spencer - “A brain in a chair”…the title of the book I wrote. The ALS tide swept my wife away. She suffered 2 years post diagnosis. I clearly understand every thing you expressed. Kenni took residence in heaven. I struggle more today than shortly after she flew away. I hate ALS because it changed our family life so much. The only thing that I can hook too is God. I can’t come up with any reason it was her time. I identified with everything you said. I will pray for you!

April 21, 2015 - 6:41 pm

Heather - Praying praying praying for you guys. Thank you for sharing – i think of you guys often every day and pray for you. May God’s peace and presence continue to overshadow you. much love.

April 21, 2015 - 7:59 pm

Arlene - Beautifully written. God ever present . . . blessed assurance. Praying God’s peace totally envelope you and Steve and your children. Love you and Steve

April 21, 2015 - 8:01 pm

Leslie Forbes-Mariani - Bo, thank you. Your words are powerful, communicate such grace, such trust, and mean so much. I have folkes I speak to who are living in grief and your words bring real truth to real grief and bring real hope. 1 Cor. 15 we are praying for you all. Les

April 21, 2015 - 9:17 pm

Lisa - Our G-O-D is bigger than A-L-S!! Sorry ALS but,YOU LOSE!
Happy birthday to the leader in this army, on this day, in this life! We will all dance with you forever!

April 21, 2015 - 9:24 pm

Melissa Murphy - Oh Bo! Words just express how I feel or how you feel. I am in tears over this situation! Your love for Steve & God is so overwhelming and beautiful. I am praying for you and your children during this difficult high tide!

April 22, 2015 - 8:20 pm

Anne Carlson - with hope. with you.

What to Get The Guy Who Has Everything

 

Hi friends,

 

This Wednesday is Steve’s 53rd birthday.  We always struggle with what to get for him because at this stage of his journey, he really does have everything he needs.  What he loves most of all is visits with friends, but he doesn’t have the energy for many of those anymore so we decided to bring the visits to him through the magic of Facebook.

 

We’re asking his friends to take a minute and write down one fun memory they have with Steve or one way he has inspired/blessed/annoyed them in the past 53 years.  Me and the kids will take turns reading the messages to him and we’ll also have the comments to treasure for a long time.  If you’d like to be a part of blessing Steve on his birthday, you can leave your memory here in the comments section or email it to me directly at bo@bostern.com

 

Thanks so much! We love you!

 

Bo for Team Stern

April 20, 2015 - 1:43 pm

John - Steve, Happy Birthday to You!!

While we’ve never yet met, know that I, and ever so many others, have followed the posts your dear wife has made on her blog. You’ve allowed us to celebrate the bright spots and travel with you through the valleys for a long while now; and for that we offer praises and thanksgivings. The journey has been arduous, but all of us have at least a glimpse of the eons ahead.

Please keep a spot for me at His feet (as well as Peter’s and Paul’s and a host of other saints who have gone before), ’cause I have reams of questions to ask when we’re all gathered together, knowing as we are known.

Feel surrounded by our love and prayers Steve (and Bo and kids), for they certainly travel with you each footstep of this journey. Nor shall anything ever separate us, for we truly are all His Kids and we’ve actually read the “end of the story”!!

Happy birthday again!!

John

April 20, 2015 - 3:36 pm

Ross & Patty Sisson - My wife and I have never really met you, but will never forget two events. First, the Wednesday night that you spoke to us with Bo’s help. Your inspired, heart-felt message has stuck with us and always will. Second, the dress-up dance party at Summer’s house when you and Bo danced, with your family(both immediate & church) watching on. Unforgettable.
Happy Birthday and may God richly bless you and your whole family.
Ross & Patty Sisson

April 21, 2015 - 7:24 am

Debbie Hammagren - Happy Birthday Steve. The memory that comes to my heart is one thing. But it is one thing that happened many many times. It is the look of caring that you give. You have an indescribable ability to make others feel cared for. I know that it is Jesus living in you, shining out of you and on to us. Much love to you. Debbie Hammagren

April 21, 2015 - 8:50 am

Karen Sesnon - Well Steve, we only met once, but I’ll forever remember what you had to share about “being numbered” and the presence of God in the room as you shared. I treasure my copy of Beautiful Battlefields because you signed it for me. It feels like you are part of our family as we’ve traveled the outskirts of your journey via Bo’s blog…thank you for letting us in! I don’t have a personal story to share for your birthday…but it was fun a couple of days ago when my husband said “who’s Steve?”…and then went on in response to my puzzled look…”well, our calendar says his birthday is Wednesday and I can’t quite figure out who he is. I’ve counted all the kids and we don’t have a “Steve”. So, ya see, you made our family calendar! I’ve hit that season where culture tells us to avoid birthdays and complain about being “old”…so your birthday popping up on my g-calender is a reminder to me to be grateful for every gray hair, to celebrate “…every minute…”, and to view each year as 365 opportunities to listen, be present, and give God the glory. Alive! Loved! Satisfied!

April 21, 2015 - 11:49 am

terri andrews - Happy Birthday Steve from a “web friend” in Indianapolis, IN that you’ve never met before but I feel like we’re siblings after reading your wife’s blog. I want to tell you your an inspiration and I’m thankful to the Lord that you and your family share your life with us. In the midst of life’s trials your life is a Godly perspective of what is important: relationship with God, marriage, children, family, love, trust, prayer, people, & hope.
God Bless you and your family, Happy Birthday!
Thank you for all of the reminders to what life is REALLY all about.

April 21, 2015 - 5:47 pm

Jenna Javens - Happy Birthday Steve!

I remember the first time I heard about you was from Whitney who informed me of your African roots. I had just moved to Bend and was unsure of how to re-enter into American life. But alas, there was hope of another fellow-African who loved that land as much as I did. In a season of transition it gave me peace and encouragement. And then I met you…you were warm and welcoming and sincerely cared to know who I was and my story. It meant the world to me. For me, it was a miraculous entry into the Stern/Parnell clan as a random village girl transplanted in Central Oregon. With very little info or time having passed between us all, you and your family made me feel at home, loved, and seen.

It is a gift that you have, Steve. You see people and in your natural, unassuming, loving ways you show people tangibly the value that God sees in them. Your care isn’t necessarily loud or obvious but there you are with consistent love, wisdom, and a listening ear. The times that I have been welcomed into your home for family dinners, watching your kids with Noel, and birthday parties are such precious moments for me. You made me feel a part of things in seasons where I wasn’t sure how to.

You also need to know that these and so many brilliant aspects of your character I see so clearly in your amazing kids. You have raised remarkable children who have absolutely been shaped and impacted by having such an awesome dad like you. You are a dad who reflects the heart of God so simply and powerfully. I am so thankful for the way you love your wife and the example that you both are to those of us that follow your path.

I love you Sterns profusely and am a better person because of your friendship and familyness in my life. Steve, I love you and am so grateful to know you. Praying that you are overwhelmed by the love and value we all feel for you.

April 22, 2015 - 12:52 pm

Kathy Field - Happy Birthday Steve!! I unfortunately have not had the privilege of spending much time with you, but I feel I know you through the heart of your family, Joe and Lila. I do have this very special memory. It was at Intermission and Bo was our main speaker and we all sat at the same table. You and Joe were relaying lines from a couple of your favorite movies; one being “Young Frankenstein” We laughed and laughed!! Your facial expressions spoke more than your words lol. And then you went on stage to join Bo and prayed over everyone in the room (even now I get goosebumps and tears are starting to flow), the anointing and presence of God that filled the room was beyond words. We could have heard a pin drop as each of us soaked in the beautiful presence and powerful words being spoken. You truly are a man after God’s own heart!!

5 Reasons It’s Hard To Be Honest When Life Hurts

I get a lot of emails from caregivers and people going through illness or crisis and the thing I hear the most, by a landslide, is “thank you for being so honest.”

 

Can I be honest?  Honesty is hard.  It’s hard for many reasons; here are a few:

 

1.  You run the risk of appearing weak and inadequate in a world that puts a premium on strong and capable.

 

2. You run the risk of people telling you you’re doing it wrong. I’d be okay with being corrected if we’re talking about how to knit a potholder or cook a leg of lamb – but being the caregiver to my husband, having his life in my hands and feeling daily overwhelmed by it? That’s tender ground. I understand why many choose to not share at all or to polish up their deepest thoughts before they let them out for the world to see. I have chosen NOT to hide the truth away  so that those who also feel overwhelmed and inadequate can – for the briefest moment  – also feel normal.

 

3. You run the risk of exhausting or alienating people who aren’t in a season of struggle. It’s hard to keep reading about the same hard nights and long fight over and over again.  I totally get that. I would have stopped reading my blog two years ago. I read other blogs with fun recipes and recaps of family vacations to Disneyworld and I wish I could write about something else. Anything else. But this is my honest.  The process of watching a spouse transition from one life to the next tends to crowd out the meaning of many other things.  I’m just not sure how I would authentically gush about meatloaf in this season of my life, though I’m not ruling out the possibility entirely.

 

4.  You run the risk of being compartmentalized by your confessionals.  Just because I feel hopeless and helpless on Tuesday doesn’t mean I feel that way on Thursday. Emotions roll like the tide for me right now…I mean, if the tide came in and out every twelve minutes or so. In the beginning, I tried to wait to write until I felt something I was certain would “stick” – but I’ve learned that there isn’t very much that sticks forever and there’s beauty to be found in the rhythm of grief and gratitude, heartache and happiness, frustration and triumph. I hope I always communicate enough of the ups and downs to help people understand that God is not distant from any of it. His presence hovers over it all.

 

5. You run the risk of exposing the people you love most. In order to be honest with what I’m feeling, I have to also include some of what Steve is experiencing. I’ve tried to be very, very careful with that and to always run things by him before hitting the publish button.  We believe it’s helpful for people to understand what life with ALS is really like.  We’re also uncomfortable sharing the full details of that reality.  So, we try to land somewhere in the middle.  While I’m always 100% honest, I’m only about 40% transparent. Some things are just too sacred or intimate to share. Most of our story lives under the surface, in the deep places, where it will stay securely held by the One who holds the pen.

 

And that’s how I feel about honesty and transparency in general the midst of suffering.  Today, specifically, I feel pretty lousy.  We had a hellish night, trying to make some new equipment work. We had a very tense morning as our beyond-tired selves tried to come to an agreement on how to solve problems that are way over our heads. I left our room at 5 a.m. for the refuge of coffee and my Bible and – here’s where that transparency comes in – I journaled, “This burden is not light or easy. It’s hard and awkward and too heavy for humans.” And I cautiously held that bold confession up to the light bulb of His scrutiny, all but daring Him to be mad at me for questioning His explicit promise that His yoke was “easy and light.”  But instead of anger, I felt Him grab my shaking fist and hold it to His heart. “The promise doesn’t mean life will not be hard or heavy, ” said He, “It means you can bring your weaknesses to Me without feeling guilty.  It means I’ll help you.  It means I won’t give up on you because your life isn’t perfect and your heart is messy A light yoke means you are free to feel and to be honest in the feeling.”

 

So I am.  Being honest today in the feeling. And in doing so, I hope I give you hope and permission to scrape away the layered-up veneer and let your pain out where it can breathe and be built into the mosaic of your beautiful life. That’s what I believe.  That’s my honest.

 

With hope,

Bo

 

(UPDATE: I just checked on Steve and the equipment is working and he’s sleeping peacefully and the coffee is working on me and I’m feeling decidedly less lousy than I did two hours ago.  Tides, I tell you.)

 

 

 

March 31, 2015 - 9:11 am

Jennie - You! This. just yes.
Oh, it’s beautiful.
–that a “light yoke” means “free to feel and to be honest in that feeling.”
Revolutionary my dear, but yes. exactly that!
love you

March 31, 2015 - 9:19 am

Lisa Campbell - Hi Bo,
I too am going through a very difficult season dealing with chronic disease. Your words about how difficult it is to be honest when life hurts ring true to me today. In this age of social media, few people are willing to be genuinely vulnerable for so many reasons. I feel it is important that we be honest with ourselves first and foremost. I have personally been living in denial for quite some time, afraid of what my new reality will make of me, afraid of what it will make of my family, and afraid of how it will impact my relationships. It is a very isolating place. I’ve been in the grieving stage of anger for some time now, and it has been overwhelmingly draining. I don’t want to be angry anymore, it has been hard to not be angry with God and everyone else.
When I read your blog I don’t feel so alone and I don’t feel so angry. You are honest about your family’s struggles and you remind me that God has his hand on my back too, guiding, loving, and teaching me. That little spark of hope within me is fed.
Thank you for your “honesty”. God bless you, Steve, and your family.
Sincerely,
Lisa Campbell

March 31, 2015 - 9:49 am

Molly - i like all of the points, but I especially love #5. Thanks. Watching you ride the tides and cheering you on.

March 31, 2015 - 2:31 pm

Phil - Hey Bo and Steve.

I wanted to write after reading “Nights:Life with ALS”.
But to tell you the truth it really shook me, for days. It was like looking into the future with Lenore and I as we journey down the road of ALS. I hated what I saw, I was so sad for both of you and sorry for myself. But I needed your words, I needed to meet you and Steve it was a God appointment. I hate to say it but your journey is giving me the assurance that in all of this Jesus is with you as He will be with us as hard as it may get. And it will get hard! Oh for the tides.

So I write today after reading your post to say, thank you. Thank you for your honesty and transparency. Your blogs are a gift to Lenore and I. You and Steve are a gift. I am impacted deeply by your words but I am changed somehow for the better by your spirit and your presence that is captured through your writing. Thank you Bo and Steve much love.

March 31, 2015 - 4:36 pm

Kim Fears - Bo-

I hope you realize how important this blog is to caregivers and family members of ALS patients. My mom faithfully takes care of my dad and experiences all of the trials you address. When she reads your blog, it gives her strength and it stands her back up on her feet.

Thank you so much!

April 1, 2015 - 2:59 am

Crystal Tolentino - I am praying for you Bo, and Steve.
Thank you
In His love
Crystal…

April 1, 2015 - 5:34 am

Laura Black - Bo
Your words are a gift. They give me courage. They help me to know that in the dark, hard, and hurting, God is still there. Thank you for your faithful example. God is working through you to minister to caregivers who are in the hardest of spots. That is so beautiful.

Praying without ceasing for you and Steve,
Laura Black

April 2, 2015 - 6:03 am

Jewl - Thank you, Bo. I fell upon your blog like the ice water that rolled over multiple heads last year. The reality of your lives with a loved one stuck in a failing ALS body must be like the ice: shocking! hard! bruising and just plain bone freezing, emiting shrieks from everyone in impact zone! But the warmth of your spirits combined with a solid faith that refuses to quit melts those cubes and flows living waters from the Source straight to hearts whom you’ve never met. Yep, we get it: Tide. Yep, 40 % transparent gives us a peak w/o violating those you love or making us feel like voyours. I can’t imagine your lives, but I try to, and that causes me to feel for you and to pray, joining a mighty army surrounding you right now. Yep, I’ve shaken my fist at God too. He loved me anyway and held me close until I could look back and see that despite my disappointments, He had a better plan. “I felt Him grab my shaking fist and hold it to His heart.” Said He, ‘You can bring your weaknesses to Me without feeling guilty'”– brought tears to my eyes. Only a BIG and COMPASSIONATE GOD could take our flailing but honest fist and turn the hard hail circumstances of our lives into salt water to heal our misery and cleanse our soul. He lives still.

April 2, 2015 - 9:30 pm

Debbie - Thank you Bo so much for sharing. I am a caregiver to my twenty-two year old daughter…sweet Ashley. I loved what you said about what the Lord says to us. Just what my heart needed today.

April 6, 2015 - 9:09 am

It’s Okay to be a Messy Girl | Because He Lives - […] Bo…she teaches me the power of transparency. The transparency of some helps others to know they are […]

April 7, 2015 - 9:57 am

DG - Thank you for your blog. My husband was diagnosed last August. So far, his progress appears somewhat slow, but the knowledge of the diagnosis is always there. I feel like ALS has stolen my future. The one I used to daydream about – where we are retired and traveling; seeing our baby girl (who is 6) go to college, get married, have babies; singing and acting in church productions….

We just celebrated his 55th birthday yesterday. I am very thankful that we can still enjoy a nice dinner and have fun. I just wish I could turn off the ALS button sometimes. The one that makes you think, “what about next year’s birthday?”

Although it’s hard to read the truth sometimes, it makes facing reality a lot easier… to know it’s okay to feel overwhelmed sometimes. Again, I say thank you.

Love, Joy and Peace~

April 7, 2015 - 12:16 pm

Kristin Neva - Yup. Tides of emotion. I try to, on occasion, write in my journal when I am not feeling down–because there are joyous moments–they just don’t get recorded as often. So keep writing your pain, for us, so we know we are not alone. Love and Prayers, Kristin

April 7, 2015 - 9:09 pm

Jess Lederman - I identify with everything you’ve said. My intense desire to protect my wife’s privacy was one of the biggest inhibitions against honesty. And of course I wanted to seem completely strong–to her and to everyone else. Thanks for articulating these thoughts so eloquently. Blessings to you and Steve.
–Jess Lederman

April 10, 2015 - 7:47 am

Tara - Thanks for putting into words- exactly how I feel! Beautiful.

April 13, 2015 - 9:33 am

Leilani Haywood - I’m a huge fan. I can totally relate. I call raising my daughter with a disability my private war that I can’t talk about. Just today I had a phone convo with a good friend of mine who is also raising a child with a disability. She lives in Florida. I live in Kansas City. There is NO ONE I can talk to because of these points. I feel like I’m weak and whiny when I should be the victorious overcoming Christian mom. Thank you for being vulnerable. Thank you for being our voice and writing down exactly what we’re going through.

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!

March 23, 2015 - 3:17 pm

Laura - I hang onto every entry. Your experience will be mine in the coming days. You are such an incredible woman. I pray for you daily. I pray that God will provide everything that your family needs to get through this time. Thank you for sharing. Thank you for being real!!! Thank you for getting me ready to face the nights to come.

Laura

March 24, 2015 - 8:13 am

Bob - Bo & Steve,
The courage and compassion you share with each other is compelling and an awesome example for all of us. We can’t begin to comprehend the daily, hourly and I am sure minute-by-minute challenges you face very day, and as you so deftly describe – every night.
There’s not a day that goes by that I don’t pray for you, the kids, your extended family and your friends that are geographically close to you and assisting you in whatever way they can.
I share your story with everyone that is dear to me, and to those that I barely know. Many of those have become “followers” and have thanked me for shedding light on your story.
I deserve no gratitude, I feel led to share your testimony of courage, strength, vulnerability and most importantly – FAITH.
Please give each other a HUG from me, and to the kids.
Love you guys!

March 29, 2015 - 11:37 pm

Pat Sullivan Whitson - Hi, Bo. I’m one of Jane Williams’ San Diego sisters…
She told me about you and Steve years ago when I shared that a friend of ours might eventually be diagnosed with ALS… He was this past February.

You and Steve are in my heart and prayers, as now are my friends, Donna and her ALS stricken hubby, Ed. They, too, are believers. They’re in their 50’s, their two teen girls in high school–one graduating this year, one a couple of years behind her. The girls will soon be told what “Daddy’s undiagnosed ‘nerve problem’ that has him limping and loosing ability to button his own shirts” is now diagnosed to be…. Sigh.

I’ve passed your books onto them. They’ve been both hard AND inspirational for them. They’re believers, as are the girls.

Thank you for your courage, humility, and generous hearts to share with us all so we can be praying for you and others who obediently surrender your moment by moment suffering for God’s glory… I am encouraged by your holiness.

Thank you for letting us prayerfully support you and witness your bravery in the midst of your battles…

Pat

March 30, 2015 - 8:20 pm

Rachel Hallett - I so appreciate your complete honesty. As a caregiver, it is easy to keep all of our annoyances and frustrations to ourselves, because we don’t want people to think we don’t love and care about our significant other. It’s healthy to be real, and unashamed. Stay strong! Prayers always.

April 3, 2015 - 1:34 pm

Link Love (vol. 7) | Kristen Lunceford - […] Nights: Life with ALS by Bo Stern […]