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In The Not-so-Merry Month of May

 

This has been a tough month for Steve – especially in the the past week. Some sort of virus, combined with his already-fragile condition made for a dicey few days for all of us. I can’t quite explain what this season is like as we live in this land filled with constant uncertainty. Friends and family wonder: should we come? And I know that simple question is loaded with more complex questions they don’t want to ask.  But I have no answers – at least nothing concrete enough for airline reservations.  If the question is: “How long do we have with Steve?”  the only solid answer I can find is: not long enough.

 

As the week played out, I asked Steve how he felt inside his mind.  He always says his spirit is strong, but I wondered what was percolating up in his brain.  He surprised me by saying he feels he has so many thoughts that he can’t get out.  I hadn’t really considered that. He can no longer type and his speech is so limited and his breathing so taxing, that he uses words very sparingly. But it turns out, he is constantly thinking and re-thinking and he needed to get some of those thoughts out.  We set aside some time for him to talk and me to type.  It was a laborious process as he stopped every few minutes to suction and regain his strength – he lasted an hour and was exhausted at the end, but I’m so glad we did it.  Hearing what is living inside his heart was wonderful and gut wrenching and difficult, but I have a better handle on how to pray for him now and two pages of Steve-words that I will treasure forever.

 

For me personally, May has been my most difficult month on record. I realized in the first week that the sentences in my head were all starting out with “I need…” or “I wish…”  I need a break.  I wish life was easier.  I need to pay bills.  I wish things were like they used to be.  You get the idea. I started working hard to replace the first two words of every thought with “I have” or “I’m glad that…”  I have a great family and beautiful friends.  I’m glad that I have the money to pay the bills.  I have the best caregivers for Steve so I can have a break during the days.  No joke, it’s a lot of work to make the switch and it’s not a very lot of fun. But it’s so, so worth it.  It keeps me out of the ditch in a million ways and sets my heart on the things that are most important.  Because the unfailing truth that guides my life and guards my sanity is this:  The Lord is my shepherd;  I have everything.  All that I am, dream, believe, hope and need is wrapped up tightly in that one sentence which has now become my May mantra. Feel free to borrow it if your month is less marvelous than you had hoped.

 

I know I haven’t said it enough recently, but we really love you and are so grateful for your support and prayers and friendship.  We read every comment and are thankful for every one.

 

With hope,

 

Bo

May 26, 2015 - 10:11 am

Patti - I think of you daily and pray for you often as God brings you and your family to mind. I was able to share the story you told of God promising that he has been to every moment of your future and placed provision there for you with 3 different friends this week. It was life-changing and hope-giving. Thank you for letting God use you in the midst of your pain. Praying comfort and hope for your family.

May 26, 2015 - 10:15 am

Mitzy - I love you & I’m praying.

May 26, 2015 - 10:34 am

Molly - And we read every word…..and hold on to our beloved hope twit we have in Jesus…..it is found NO WHERE else!! Especially not within ourselves. I am thankful that
God is filling you with grace and pray that it will cover you very minute of every day.

May 26, 2015 - 10:40 am

Jalet - The stern, steadfast clinging to the Shepard in the Stern household, is a sanctified glory of a painful and stark beauty. The raw real, the depth of canyon experiences you choose to refer to as “ditches” is a lantern to my eyes, and a shoring to my heart. I would never wish this monster of a disease on anyone, but what I have learned in the playful yet painful support from Team Stern has been life changing for me. Thank you for taking the most private of moments and in the exhaustion, allowing your heart to be led, by that of the Shepard. It takes energy to be honest when it is easier to conceal the ugly. Thank you Bo, Steve and family, for giving me the gift of growing in Christ while walking alongside your journey. Our prayers remain unceasing for peace, clarity and strength in the battle. We love you. The battle belongs to The Lord! Amen.

May 26, 2015 - 11:46 am

Lori Greenstone - breathing with you; praying too. love never ends, dear friend

May 26, 2015 - 12:29 pm

kathy - I remember a few years ago at church when I was praying for you and Steve. The tears came and then in an instant I heard, no more tears, I want you to look beyond what your eyes see. I want you to see Steve’s spirit. It is strong, and it will become stronger each day. I walk with Steve and Bo, and family. Many will see deeply into the grace and love of the Father through this family. Believe in what you don’t see.
And those words have and are showing true through the time that has passed. God bless you all. We love you deeply.

May 26, 2015 - 1:17 pm

David Chown - Bo and Steve, I honestly don’t remember if we have ever met. (Not a good comment on my mental acuity.) I hope we have, back in your days with us here in Portland. Of course we have many friends in common and we share so much history and faith. But you are in my prayers often through the miracle of Facebook. I have walked your journey, not as intimately as you are but enough that I hurt with you and pray for you often. Love you both and admire you more than I can say. Stay strong in the Lord and the power of His great love. If we have not yet met, I know we will someday, somewhere, in this body or the glorious one to come!

May 26, 2015 - 1:38 pm

Michael Wenham - Bo and Steve – We read your words carefully and they much encourage us in our long march to freedom through the valley of ALS/MND. I’d like you to know that here in the UK we try to pray for you daily. I believe that God will not let you go even though your feelings may tell you otherwise. Deep peace be with you all.

May 26, 2015 - 1:58 pm

Donna Armstrong - Hi, my husband is in his 5th yr of ALS. He has been on a vent and feeding tube for 2 years now. Which made him feel so much better. He can no longer speak, but thanks to his speech therapist, he is still able to type just a little. I am his sole caregiver, which makes our life extremely hard. A lot of sleep never comes my way but I try to take catnaps during the day. We have been married for almost 45 years. I will do everything it takes to make him comfortable. Thank you for helping my thinking as far as your first two words. I will start doing that immediately. I need to.
Please take care. you both are in my thoughts and prayers.

What I Learned About Heaven from American Idol

 

True confession: Steve and I have watched every episode of American Idol this season.  Every, single one. This is astounding because there are virtually no entertainment choices on which we agree.  He’s sports and action movies.  I’m documentaries and You’ve Got Mail.  We haven’t always watched American Idol, and we’ve never watched an entire season until this year.  This year, as Steve has been stuck at home, we’ve looked for ways to spend time together and AI has become our regular date night. Even when it fell on the opening night of a conference I was very involved in, the decision wasn’t even a little bit hard – no way was I going to leave Steve on AI night.

 

Tonight was the finale. The last show. And it was surprisingly, weirdly painful for me. I have no particular attachment to these competitors; but this show has marked a specific stretch of road for me.  It opened on January 7, exactly one month after Steve went on hospice. I remember wondering if he would be here for the end of it.  Each Wednesday and Thursday, it marked an escape for us from our reality. I talked incessantly through it. “I don’t like her vibrato.”  “Why is he wearing a hat again?”  “Is that tattoo real, do you think, because I didn’t notice it last week.”  That kind of riveting, never-ending commentary.  Steve doesn’t have the energy to respond much but that doesn’t stop me from talking.  We were together and that’s what mattered.

 

So, back to tonight. The show itself was a pretty epic disappointment. I didn’t enjoy the hours of filler and a lot of it seemed sort of…desperate and maybe a little bit tired and sad.  But when it was time to announce the winner, I found myself overwhelmed with emotion.  The decision hung in the balance between two young, handsome, talented men.  They were both worthy competitors, but when Nick’s name was called, I was so happy for him. I mean, like unreasonably happy.  Tears-streaming happy.  I cried as he was pounced on by his competitors’ fierce hugs while he tried to sing his new song and then I really cried when he left the stage, mid-sentence, because he just needed to find his dad for a hug.  Confetti fell thick all around him, all around everyone.  And you could see it in his face: this was a moment beyond his craziest dreams – the kind of moment where you know everything is about to change.

 

And in that very same moment, in the magic of Nick’s victory, I suddenly knew what I hadn’t known before: the reason we’d been watching it all this time. Call me crazy, but I think I was seeing a picture of Steve’s future as he enters heaven…the winner. Microphone in hand, he’ll sing the song of the redeemed (and oh, sister mercy, my husband can sing!)  as confetti falls and those who’ve gone before cheer, because they know what we cannot possibly know from our place in the cheap seats – they know that everything is about to change for Steve Stern.  He’ll try to keep singing, but he’ll have to stop to find his dad in the crowd and go hug him, long and hard.  And more than anything, he’ll understand what the long fight was for.  What might seem like a disappointment of a finale will now be known as the doorway into life beyond his dreams.  Beyond all our dreams.   And from that vantage point, on that stage, he will finally and truly understand what it means to say death has no sting. None.

 

Nick finally pulled it together and returned to his spot on the stage in time to sing the very last line of his victory song, and the line was,

 

Oh, what a beautiful life.”

 

 

Yes.  Beautiful, indeed.

 

With hope,

 

Bo

 

 

 

 

May 13, 2015 - 11:40 pm

Michelle Watson - Oh Bo. You have me in tears here, my friend. I watched the AI finale too and never saw all that you saw woven through the storyline. But now I do. It IS what Steve will encounter as he enters heaven soon. He will be given a crown and a title…and then he’ll give his crown to Jesus.

Now I will replay tonight’s ending in such a more poignant way because I will overlay Nick’s experience with Steve’s reality. Once again you have opened my eyes to things beyond the surface, deeper than meets the eye. I wish you didn’t have to go through so much pain to have such a gifted way of doing just that but I am beyond grateful to be one of the recipients of your insights. I love you so very much and continue to pray daily for you to have the Trinity’s supernatural anointing in these days. :o)

May 13, 2015 - 11:49 pm

Lisa - I love what God can weave into a story line- how he opens hearts, and doors, and speaks straight into us….I read your blog everyday, you write and your story of living through the brokenness and the hard spots has shaped and changed the way I think of the man God gave me. It has changed my marital perspective for the better and caused thankfulness to flow again. Thank you for writing, and this post especially, It makes me feel like I just can’t wait for Heaven and Jesus.

May 14, 2015 - 12:21 am

Vangi Taron - That was…glorious, Bo. Just the best. Love, Vangi

May 14, 2015 - 8:14 am

Teresa B. - I have no words. Just beautiful.

May 14, 2015 - 8:17 am

Pat Whitson - Thank you, Bo, for your generosity in the midst of your vulnerable, live-redeeming suffering…

May 14, 2015 - 8:31 am

Beth Allen - Oh my goodness…thank you once again Bo for making me cry:-) Really for sharing your heart! What a beautiful perspective!
Continuing to pray for strength when yours is spent and grace to keeping hearing God’s sweet gentle voice in the quiet moments of your difficult journey. Love and hugs to you. In the strong name of Jesus.

May 14, 2015 - 8:49 am

Janelle - I get it. The words you use paint a picture. It’s not a dreamy, flowy watercolor or a pastel chalk sketch. It’s a picture, so clear, so vibrant it looks like a photograph…. but better. Steve’s day will be a glorious one in Heaven. Of that, there is no doubt. You are a blessed woman.

May 14, 2015 - 10:59 am

Chelan René Russ - No, I just watched the DVR’d finale…and didn’t tear up til I came across and read your thoughts. I’ve been caregiving for a man in hospice, who just transitioned into heaven last night at 11:24pm. This week last year, I lost a dear friend at the hands of the same cancer, only just 38 yrs on this earth. He was also in hospice care. For both, God gave me an opportunity to read scripture and pray in their last days, over them. Yesterday I took his hand as he took sporadic breaths, unresponsive. I spoke softly in his ear, describing heaven to him. How the Father’s arms are wide open and welcoming. They are at the end of this river…just let the current gently float you downstream, right into His light. His love.

This week was hard. But there is a release now. A knowing.
They are with my Jesus. Today, I find myself both exhaling from the intensity of care this last week of his life on earth…and celebrating the continuation of it, completely whole. Completely free.

May 15, 2015 - 8:40 am

Jody Lee Collins - Bo, I love the fact that when our spirit is wrapped up in Christ’s view of life that we see Him in all of it.
I’m with Michelle–lots of tears here.

You are a gift; so is your hubby.

May 15, 2015 - 10:35 am

Jewl - Bo. You’ve encapsulated it. The less than climatic rising action just before the climax because the dying part reeks with the smell of earth, but the cheers of those who’ve gone before greet the saved at the gate and the most amazing, beautiful life waits for those who have the one kind of entry ticket required, “Sins paid in full by Jesus!” And to that person, the aches, the unfulfilled longings, the out and out pain washes away forever like footprints in the sand. Yep, I could sense where you were going, and it makes me want to watch the AI finale’ to feel the anticipation of great rejoicing with you! I think death will always seem mid-sentence . . . until we get to the other side. I’m sharing your hope on Facebook.

May 15, 2015 - 6:36 pm

Mike Davis - Bo,
You’ve done it again. You have found the words to explain it all. Praise The Lord that He has given you that gift. I was in tears with you at the thought of Steve singing his way into heaven. Hallelujah.

May 21, 2015 - 10:41 am

Dede - My wonderful son lost his battle with ALS on May 7 but he is now with Our Lord, Jesus Christ, free to talk and move! I will miss him terribly and so will his wife and 14 yr old son and 12 yr old daughter, but we all know that he now has eternal life in heaven. Every time I start to cry, I envision his disease free body soaking up all that heaven has to offer and it brings comfort to me. Oh, what a beautiful life, indeed!

May 23, 2015 - 12:04 am

Amy in Estacada, Oregon - Bo …. you are such a brilliant beautiful soul. The Lord is so pleased with you and your gift in making a joyful noise! You spread the gospel in such an authentic, easy to follow way. You and your beloved Steve are my favorite love story. I pray that you both know and understand how much your lives have touched even strangers like myself. I met you at George Fox University at a conference…probably 8 or more years ago. God Bless you and your beautiful family.

May 23, 2015 - 8:51 am

Susan Smith - Bo,

I am sorry for the pain and suffering Steve and your family are experiencing. But I can testify that God indeed has used Steve’s ALS and the insights and perspective from the Holy Spirit that you share is saving the lives of many as we hope in a Sovereign God and shift our focus from earth to things that matter in heaven.

Thank you for your openness and poignant examples that are relatable to us all. For applicable Scripture references to hide in our hearts. For glorifying God on this Beattlefield where He has gone before you and supplied a provision for every minute.

Thanking God and praying for you and your family,

Susan

5 Things I Want Caregiving Spouses To Know

 

Dear friend,

 

I don’t know exactly what drew you to this post, but I’m guessing it was bad news.  Perhaps your spouse was recently given a terminal diagnosis or has been struggling with something chronically debilitating for years.  Maybe you have a friend whose walking a spouse through the Shadowy Valley of illness or injury and you’ve run out of advice or encouragement.  Whatever brought you, I’m glad you’re here.

 

Nearly every day, I receive emails or phone calls from people who are reeling from the shock of their spouse’s diagnosis or suffocating beneath the weight of responsibility they carry as they try to navigate their new role as caregiver while also hoping to hang onto their role as husband or wife.  I wish I could linger over coffee with every person experiencing this – not because I have all the answers, but because I remember the first days so well, wondering if I’d survive and longing for someone who had been there to assure me that I just might. So, here’s what I would say if we could have that coffee:

 

1.  This will be hard.  Really hard.  But you will survive.  You absolutely will.  I don’t even know you and I can already tell you’re a fighter.

 

2.  I don’t know this for sure, but there’s a good chance that no matter how much you love your spouse, there will be days when you would like to run away. Your heart may want to push away from the seemingly never-ending shores of grief, with a longing for something new and exciting or old and familiar.  You may wish with all your might for what was or you may be filled with the desperate desire for the reassurance that life will still exist when the dust settles.  I don’t know the details of your longings, but hear this and hear it well:  You are not bad for having them. You are normal. You are human. You are heartbroken.  You are not bad.

 

3.  You will need help. Start thinking about how to get it before you’re desperate for it. You will need medical help (caregivers – really, you will and I’ll write a separate post someday to tell you why but for now? Please trust me) and you may also need help with finances, housekeeping, grocery shopping, etc.  It is not weak to need help; it’s wise and strong and a gift to those who long to step in and serve you.  For my money, the most important thing you need right now is a person who will ask for and organize the help you need – a person who is not you.

 

4.  If there’s one determination you could make right now that I think will serve you well for the rest of your battle, it’s this: I will keep my heart soft  for others, for my spouse and for myself.  In doing so, I will keep myself safe from the poison of bitterness.  If there was one more determination you could make (bonus!), it would be: I will take every opportunity to rest or to laugh that comes my way.  

 

5.  When your loved one is on the other side of this illness, you will still have yourself.  You can’t get away from yourself, so try to be fun to be with. Don’t live in regret.  Don’t live in fear. Don’t live victimized.  Live real. Live raw.  Live healthy. Live love.  You can’t go wrong if you remember to keep living.

 

 

So, I guess that’s it.  I mean, it’s not – there are a million other things I would say if I could, but these are the things I most want you to know because they are the things that have saved my life in the hardest and most beautiful season I’ve ever experienced.  I hope they give you hope.

 

You’re my hero,

 

Bo

April 27, 2015 - 11:47 am

Angie - You’re my hero, too, Bo. Thanks for sharing these words of truth.

April 27, 2015 - 1:14 pm

Laura Black - You make me brave!!!! Thank you for these words. They are so precious. I am keeping you all in my prayers.
I know God is smiling because you are using His story in your life to reach out to others. It is a beautiful thing in this brutal battle.

Thank you BO!!!

April 27, 2015 - 5:57 pm

Deb Pence - My husband was diagnosed with ALS in May of 2014. I have been reading your posts. They really encourage me. The no. 2 item in this post so fits me. It is exactly where I am today. Thanks so much for your posts. I am going to try and follow your advice.

April 27, 2015 - 7:04 pm

Susan Baker - Bo,
I seen you as you ministered to the
Ladies at eastside church in prineville
You so touched my heart..My husband
who was sick for six years, went to
Heaven June 17th 2014…
I still can’t believe it is real.
My heart goes out to you big time
& I do pray for you..
May GOD give you strength for
each day…
…Blessings…Susan

May 1, 2015 - 7:12 am

Laurie luoma - Thank you Bo. Good, good words. You’re our hero!

May 1, 2015 - 9:42 am

Tus Sligar - Bo, just wanted to say hi. I have been keeping up on your reports
regarding Steve. Thank you for sharing your heart and hurts w/the world. Please tell Steve, Tus sends his love/hugs and prayers! Steve and I go way back and have had many greats times together… work/golf/softball/basketball/lunches, etc… I could go on and on. Steve as you well know is a Great/Godly Man!! Again, just wanted to say hi and Thank You for sharing him!
Please hug and kiss him for me, from his brother!!!
Tus

May 2, 2015 - 9:26 am

Sally - Thank you for helping me walk this unexpected journey of caregiving

Yes it’s painful and it’s hard but you are right it can be beautiful and precious

Praying for you today

May 3, 2015 - 7:16 pm

Debbie - Thanks Bo, my heart sure needed that today.

May 9, 2015 - 10:33 am

Patty - I am just now catching up here as we have been in the trenches. Yes, yes yes….you nailed it. And once you are on the other side (hubby passed 3weeks ago) you will realize that you really were strong enough, that you could have kept going even longer (after so many times thinking “this is so so hard, how long oh Lord”), and that God makes you brave. It is not the end of the story, just the turning of a page. Your words have helped me greatly during this time, thank you!

May 11, 2015 - 12:02 pm

Elsie - Just wondering if you heard the news of sweet Florence Evanow’s passing. Please contact her if you are able.

May 24, 2015 - 9:34 am

Judy Treusdell - Thank you. I heard a repeat of an interview with you on Family Talk just a couple of days ago. We just received my husband’s blood test results day before yesterday. And we have read and read and read article after article on the diagnosis. Prayed and cried. My head hurts. My heart hurts. Today I remembered you. Thanks for your post.

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!!

April 26, 2015 - 1:15 pm

Crystal Tolentino - Dearest Bo,

I just wanted to tell you I am praying for you. We all have our crosses to bear don’t we, and aren’t they to refine us as gold? Sometimes what a cross to bear… My cross as a psychiatric nurse working at a state hospital is to witness to the totally debased and decrepited, staff and patients alike, some are even devil possessed. However, God has put me there for some reason, where the light is barely shining, sometimes I feel all alone, like last night. I pray for strength. I pray for courage, I pray to be that lampstand of light even if it is barely glowing. Sometimes I question, sometimes I wonder, why? Why me? There are different levels of pain, but to me it is all the same. You and I are about the same age, I was born in 63, and your words penetrate me because as a nurse I do understand more than you will ever know. I had to quit medical surgical nursing way back when because I had no boundaries do to my childhood abuse; I took on all my patients’ sufferings. Nightmares abounding atlas, I took refuge in psychiatric nursing, attempting once or twice in the last 36 years to help those medically, only to see my weakness in that area has not changed. I save worms before they drowned or dry up. Who does that? I save any living thing I can; only to lose so many in the process, i.e. birds… In any case, I lose a lot more patients to being lost spiritually than I even want to count or remember. My refuge come with one or two possibly that God has chosen to know Him and come to Him. I know how it feels to feel like the tide is coming in too fast and I am drowning in sorrows of the lost. I Thank God this lost and fallen world can ravage the body but those who are His, the fallen one, the ruler of this world cannot steal away their souls. Because He said, “I pray for them. I do not pray for the world but for those whom You have given Me, for they are Yours.” John 17:11, and 17:24 “Now I am no longer in the world, but these are in the world, and I come to You. Holy Father, keep through Your name those whom You have given Me, that they may be one as We are.” I take comfort in this. Satan or living in this fallen world may cause death through sin, but He cannot take what our and those who He has chosen spirit.
We will all be in Heaven one day where there is on more suffering, pain, and all the old things have past away. Thanks be to God Amen! And Amen! You and Steve and family are in my prayers.

In His love and mine
Crystal….

April 26, 2015 - 1:21 pm

Crystal Tolentino - Dearest Bo,

I just wanted to tell you I am praying for you. We all have our crosses to bear don’t we, and aren’t they to refine us as gold? Sometimes what a cross to bear… My cross as a psychiatric nurse working at a state hospital is to witness to the totally debased and decrepited, staff and patients alike, some are even devil possessed. However, God has put me there for some reason, where the light is barely shining, sometimes I feel all alone, like last night. I pray for strength. I pray for courage, I pray to be that lampstand of light even if it is barely glowing. Sometimes I question, sometimes I wonder, why? Why me? There are different levels of pain, but to me it is all the same. You and I are about the same age, I was born in 63, and your words penetrate me because as a nurse I do understand more than you will ever know. I had to quit medical surgical nursing way back when because I had no boundaries do to my childhood abuse; I took on all my patients’ sufferings. Nightmares abounding atlas, I took refuge in psychiatric nursing, attempting once or twice in the last 36 years to help those medically, only to see my weakness in that area has not changed. I save worms before they drowned or dry up. Who does that? I save any living thing I can; only to lose so many in the process, i.e. birds… In any case, I lose a lot more patients to being lost spiritually than I even want to count or remember. My refuge come with one or two possibly that God has chosen to know Him and come to Him. I know how it feels to feel like the tide is coming in too fast and I am drowning in sorrows of the lost. I Thank God this lost and fallen world can ravage the body but those who are His, the fallen one, the ruler of this world cannot steal away their souls. Because He said, “I pray for them. I do not pray for the world but for those whom You have given Me, for they are Yours.” John 17:11, and 17:24 “Now I am no longer in the world, but these are in the world, and I come to You. Holy Father, keep through Your name those whom You have given Me, that they may be one as We are.” I take comfort in this. Satan, or living in this fallen world, may cause death through sin, but he cannot take what belong to Him and those who He has chosen, their spirit.
We will all be in Heaven one day where there is no more suffering, pain, and all the old things have past away. Thanks be to God Amen! And Amen! You and Steve and family are in my prayers.

In His love and mine
Crystal….

April 28, 2015 - 9:54 pm

Crystal Tolentino - Dearest Bo,

Forgive me, I was emailing you and almost through when the post went into outer space. If it is somewhere forgive me for saying this again.

I just wanted to let you know that I saw a movie on Net-Flex tonight, it was called “You’re not your own.” Hilary Swank played the one with ALS. It was basically a story about redemption. The girl who took care of her was like someone I take care of at my hospital…

It was a redemptive story for her, however, sadly, the Lord was not in it, or God. I felt it expressed someone with ALS accurately enough though.

I cried through practically the whole movie, and thought of you and Steve.

Please know, you and Steve are in my prayers continuously. Thank you for being such an inspiration. May the Lord be with you always, and may he shine His face upon you in this time

In His love and mine
Crystal…

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.

April 26, 2015 - 9:35 am

Donna - Just beginning the ALS journey with my husband. Thank you, Bo for sharing your heart, and hope in our savior.

April 29, 2015 - 1:20 pm

Nancy Thompson - A member of my lifegroup forwarded me your interview with Focus on the Family. I have been reading your blog ever since. This is a beautiful entry and as I embark on the journey of ALS with my wonderful, strong, loyal, faithful (also 53 year old) husband, I take comfort in your words. They are both beautiful and sad; both comforting and frightening; they are reassurance that I am not alone in my thoughts. Thank you. Nancy