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Comfort and Joy

 

The hardest question I’m asked right now – the very hardest question – is “How are you?”

 

It’s not hard because my life is bad.  It’s hard because I’m just feeling...so many things.  The range of emotions I feel on any given day swings wildly from calm and grateful to confused and frustrated.  My family is blessed to be together on this road, but we are weary. Steve is weary. His body is used up and his spirit is struggling to stay comfortable in such ill-fitting skin.  It’s almost like the inner Steve is growing as rapidly as the outer man is failing and like a baby outgrows the womb, the real Steve is ready to breathe the fresh air of real life. The process is the most beautiful and brutal thing I’ve ever witnessed.

 

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This photo will always be precious to me because I know when it was taken. I know those smiles are as real as the tears that fell just moments earlier. I know that dancing happened immediately after. This picture is for me, a little preview of heaven.

 

 

We talk often and openly of heaven. In fact, we talk about it in ways that might make other people uncomfortable, but heaven is not a cheap consolation prize to us – it’s the best case scenario.  We talk about the people he can’t wait to see (his dad, my grandpa, Wendell Smith).  I talk about what the libraries must be like and how it must look right now, all decorated for Christmas, and he talks about the golf courses. Yesterday, as I was pouring yet another carton of vanilla formula through his feeding tube and realizing it’s been nearly 10 months since he’s tasted any food, we talked about how fun it will be to get breakfast in heaven.  We are not afraid of heaven.

 

Our home is almost constantly filled with people.  Hospice nurses, health aides, social workers.  The caregivers who work for us and take such amazing care of Steve so that I have some breaks. Friends and family coming to say deep words. People dropping off dinners and groceries and flowers.  I look forward to the day when my house is quiet and private again and I can be the one taking the casseroles and flowers to people I love, but until then I know for certain that we would be lost without this unbroken stream of support and sympathy.  Just so lost.

 

Our kids are exactly as you might imagine. Tired. Heartbroken. Hopeful. Strong.  They surround their dad like sentinels, marching as far and as long with him on this road through the Shadowlands as they can, knowing the path will eventually narrow and there will only be room for one. Until then, we march.  And we write.  And take photos.  And say the words we need to say to honor the life of the man we love the most.

 

 

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If you’ve read this far, you might be thinking, “She’s processing all of this so well.” False. I have never felt more weak, more inadequate or more overwhelmed.  Steve’s needs are immense.  The more care he needs, the fewer people there are who are able to give it.  And though we are surrounded by such a brilliant army on this battlefield, I realize that everyone can opt in and out of the fight except for me.  I don’t want to opt out, but there are moments when I am certain I will break beneath the weight of responsibility and the sorrow always bubbling like a pot of stew on the back burner. I am learning both how strong and how weak I am.  I am learning to receive help from those who can give it and make no apologies for the fact that I need it. I am learning to listen to the voices of those who have gone before me on this road without being defined  or confined by them. I am learning, now more than ever, to lean hard on the grace of Jesus.

 

So, that’s a little update from our world. I hope it breathes hope, because we really do feel that so much of the time.  And the fact that we feel it any of the time during this fierce fight is nothing less than a Christmas miracle.  Jesus, Emmanuel, came to our sad and broken world to bring endless, eternal hope. This is why our weary world rejoices. This is why we’re still able to dance in the kitchen.  His love brings comfort and joy, and we are drinking it in this season and always.

 

 

Oh, how we love you,

 

Bo for Team Stern

 

 

We are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed; always carrying about in the body the dying of Jesus, so that the life of Jesus also may be manifested in our body. 2 Corinthians 4:9

December 10, 2014 - 8:11 am

Megan - I love you, Bo. Your honesty is courageous and your strength – even when it waxes and wanes – is SO inspiring to me, and to others. When I picked up my signed copy of “When Holidays Hurt”, I was fortunate enough to chat with Steve for a few minutes. I’ll include this in my blog, but HE was able to offer more comfort and solace to ME… rather than I to him. Thought his body was weak and frail, underneath his tired eyes there was a glitter. And I swear to you, I could literally feel a palpable warmth and love come from him. It was comforting to be in his presence. He sure is a special guy. In sum, all I know is when I stepped out your door and down your ramp, I was changed. For the better.

December 10, 2014 - 8:33 am

Trudi Burner - Praying for you mightily as you walk this narrow path…..I feel, share your pain as I lost my mom to ALS in March 2012….I cared for her for six months prior to her final journey….the trials and tribulations are heartbreaking, the reward of seeing her again one day keeps me going….knowing she like your sweet, dear husband, is feasting from HIS table….and the tastes…are incredible….sending you loves, hugs and prayers sweet sister!

December 10, 2014 - 8:45 am

Teresa B. - Beautiful family photo. I wish I could say words to help you through but I’m sure you hear so much from our Father. It makes me think of the end of “Footprints in the Sand”

But I noticed that during the saddest and most troublesome times of my life, there was only one set of footprints.
I don’t understand why, when I needed You the most, You would leave me.”
He whispered, “My precious child, I love you and will never leave you Never, ever, during your trials and testings.
When you saw only one set of footprints,
It was then that I carried you.”

He is carrying you, ALL of you. :)

Peace and Love,
Teresa Brown

December 10, 2014 - 8:50 am

Carol Smith - I can only imagine what it is like to walk in your shoes because you have dared to let us into your world with your raw honesty and compelling words. I’m sorry I can’t adequately express the heartache for your suffering and admiration I feel for your family. I’m faithfully praying your remaining days together on this side of eternity are graced with sweet moments you will carry as eternal treasures. Thank you family Stern for your legacy of hope.

December 10, 2014 - 8:51 am

Phil - Bo, all of your writings have touched me but this one really struck hard. The emotions on every page are a real part of life but not many have tom deal with them in a given day. As one of Steve’s two brothers and sister, it’s hard to articulate into words how I feel today, so I find myself praying for a full measure of God’s amazing grace upon you ever hour of every day. It seems like a cliché to say “God’s Grace is sufficient” but we all know it is and will be for every step of the way.
Looking forward to this weekend,
Phil

December 10, 2014 - 8:58 am

Janelle DeCelles - I can’t help it. I read your words and I feel you emotion and I weep. I weep with sorrow and I weep with hope and believe that somehow, in some amazingly supernatural way, my tears are helping to carry a piece of your burden. Yes, this weary world rejoices because we know what our Savior did and we know what awaits us. Thank you for being JUST you……

December 10, 2014 - 9:21 am

Sherri Gragg - Beautiful, Bo.

I am loving you and praying for you every day from afar.

I remember a line from one of Anne Lamott’s books…It was during the season when she was losing her oldest friend to cancer. Her friends’ doctor told Anne to “pay very close attention to her” as she walked through the shadowlands because as she did, she was teaching Ann “how to live”.

This is how I feel after reading your post today, as if I have witnessed a powerful example of how to live.

December 10, 2014 - 9:39 am

N. Fisk - You just expressed exactly what my Aunt has been telling me about my Uncles battle and her feelings and I understand so much better now. Thank you for sharing.

December 10, 2014 - 9:45 am

Jeanne Bullock - Precious words.

December 10, 2014 - 10:15 am

Karen C. - I started following you on Facebook when my husband was diagnosed in 2013. He has already passed away, for his ALS form was an aggressive one, so all said and done his was 10 months. But that’s not why I decided to write today. I decided because reading your posts is like reading my life during those 10 months. A life that is not spoken too much, but it is people like you that is bringing the life of an ALS family to light. Nobody knows what it is like, unless you have been there and are living the life. They can read, but they will still never understand what it means to watch your husband wither away. It is a sight I will never forget.
You talk about all the people in your house, I don’t think a day went by we didn’t have a visitor. Then the week of his funeral the house was full of family but the day after his service, EVERYBODY left! It was just me and the kids. The house was so quiet it was numbing. Its been 7 months now, and we are finding our new life. I encourage you to take part in the aftercare Hosparus offers. They have been amazing with me, the kids and family group sessions. You are NOT alone. You may feel weak,inadequate and overwhelmed but as a friend would constantly remind me, God would NOT give you, what you cant handle. You are strong, you will survive. Take Care.

December 10, 2014 - 10:19 am

Julie - Asking God’s presence to be real and surround your family today.

December 10, 2014 - 10:19 am

Dona Holland - I have ALS. I know all these feelings, as do my family. This is do beautifully stated and lately I have been composing in my head the answer to “how are you” which is so often ask of me and my family. Hopefully I can write my own feelings but untill then, will share these words that have come from your heart.

December 10, 2014 - 10:24 am

Jill Shelby - Asking God for peace, comfort and joy this holiday season for your family. For it to surpass any understanding. Thanks you so much for sharing your journey. You are loved in Washington.

December 10, 2014 - 10:36 am

Lori McCabe - Bo,
I want to first hopefully spark your memory as to who I am: I fist met you at my home church (Beaverton Foursquare), having earlier missed hearing you speak at our women’s retreat due to a at stint in ICU for chemo related complications. It was such a blessing to meet you and to put a voice and a face to the woman I had been praying for. You so graciously took your time to send me EVERYTHING that I missed from the retreat and I devoured it all. Four of us girls used your Beautiful Battlefields book and the DVDs you sent as a kind of book club as meets Bible Study. It was just what I needed, what we needed. I say all this to become yet another voice, assuring you that your story matters. That it is making a difference. I feel an inner need to do the same, to make this fight worth something. I won’t insult you by suggesting that my battle has been as difficult, now way. But with 5 Cancer related surgeries, two of them on my lungs, a chemo that nearly ended my journey and “coding” in front of my dear sweet husband Michael after the last surgery, I feel I can scratch the surface if only just a bit. All of your thoughts, feelings, emotions, I find myself relating. I write this as I sit up at OHSU, preparing to once again step on my battlefield. 5 days here to administer the most toxic chemo they could find. It will either work, or it won’t. Simple as that. My prognosis isn’t good, not in human terms. So I find myself drifting between prayers for healing, or maybe just sustainment and the prolonging of the inevitable, to Jesus just please, please use this for something!! All of this pain, this suffering just cannot be for nothing!! But, I trust Him. Beyond the emotions of the day or hour or minute. I trust Him. And I just wanted you to know, that a girl from Hillsboro read your book(s), reads your blog, and says “Yes! Amen and Amen! I am with you! You are unknowingly pouring my heart out too as I read and I suspect are doing that for more women and men than you could ever possibly Imagine. Bo, I am continually praying for you and Steve, your girls and extended family. You and Steve have most certainly fought the good fight. I am honored to fight with you in some small way.
Love, Lori McCabe

December 10, 2014 - 10:56 am

Nicole Provo - Words… as usual, they fail me. Just know that we are praying for you all along with the rest of your wonderful army–though we cannot be present with you physically, we are present in spirit and believing for His supernatural strength to carry you all.

December 10, 2014 - 10:58 am

Tara - Beautiful, raw, real words. Thank you for opening your heart, your home, your strength and your weakness to us. Because life doesn’t come wrapped up in perfect, shiny paper. But tossed, turned, full of journey. And in it all… in the real human experience and the real touch of our Creator and Redeemer’s Hope is the beauty.
Thank you.

December 10, 2014 - 12:07 pm

Terry S - Dear Bo,

Thank you once again for sharing your heart. I remember when my brother and best friend was diagnosed with ALS in August of 2013 he told me he wanted to learn more about the spiritual aspect of things I always talked about. I told him that no, I would be learning far more from him as we took this journey together. I never had anything that forced me to admit powerlessness like my brother’s disease. I also never had anything cut through the petty BS of this world and show me God’s love either. As his body was slowly taken away God was preparing his soul. He was the bravest man I’ve know and came to know God through his affliction. He went to Jesus on Sept 29 2014.I held his head, told him I loved him and would see him soon as he breathed his last breath. The moment was so powerful. I can only compare it to seeing my children born.
I continue to keep you, Steve and your family in my prayers. Your latest book has been so helpful in the wake of Tim’s death.
May God continue to bless us all- Terry

December 10, 2014 - 1:56 pm

Doug - As one who, I hope and pray, is early on in my walk with ALS I love your site. Your view of Heaven is wonderful. We have also been talking, praying and anticipating Heaven. I pray for my wife because she can’t opt out – you said it so well. I get encouraged by you and your family. Thank you.

May God continue to use you and bless you.

December 10, 2014 - 3:33 pm

Jane Lellman - I was thinking earlier today about how difficult it is to head into the Christmas season without my precious Santa Jim. But I have snapshots, both real and in my mind, of that last Christmas with Jim and I find when I cannot feel my feelings or touch the joy of the season, God brings one of those snapshots to mind! Then I can rally around the joy preserved from an earlier time! Thinking of and praying for all of you.

December 10, 2014 - 6:06 pm

Debbie V - Bo,
This was an incredibly written note that has stirred me to even more respect for you and Steve. We are praying and believing. Thanks for allowing others to see true Christianity, our weakness for His strength!
Blessings,
Debbie and Gary Vogel

December 10, 2014 - 6:14 pm

Debbie - Dear Bo, praying for your wonderful family.

December 10, 2014 - 6:30 pm

Dianna Salciccioli - Bo ( and family) we love you all so much and our hearts hurt for you. Eternity and “healing” there are not only a hope but a reality-and yet there is sadness…….we pray for you, love you, and continually ask God to carry you in this season.

December 10, 2014 - 6:55 pm

Zig - Bo, I often think of your family and of a time both you and Steve ministered to Teresa and me, sharing a prophetic word that all of our kids will be in heaven. You brought us such peace. Thank you for following after God with all your might. Of battling and wrestling to keep you faith real and for it to not just be a word that we utter.

I recently read a piece from Smith Wigglesworth. It reads,

One of our workers said to me at Christmas time, “Wigglesworth, I never was so near the end of my purse in my life.” I replied, “Thank God, you are just at the opening of God’s treasures.” It is when we are at the end of our own, that we can enter into the riches of God’s resources. It is when we possess nothing, that we can possess all things.

Bo, I pray that Wigglesworth’s words are found true for you. That you and your family are finding God’s treasures and the riches of His resources at this time when you are all at the end of your own.

December 10, 2014 - 10:16 pm

Socorro Alonzo Hughes - Beautifully written you absolutely express the journey that those of us who have been there know. It is sadness, hope, joy, why, and love. I lost my husband in 2010, he was diagnosed in January 2009. Our children rallied around him, and we came together as a family supporting each other. He was brave and he provided comfort and hope for us when we were weak he was strong and he made me stronger with his love and his wonderful outlook on life. He lived life to the fullest despite how hard it must be. It cannot be easy to live in a body with ALS, he made it look easy. My hero no doubt. God Bless you and your family. I fully understand…..

December 10, 2014 - 10:18 pm

Marj Bollman - Steve and Bo, Mom asked me to send you a message to remind you of how much the Troyer family cares for you all. We are all praying for your strength and peace. Much love, Marj

December 11, 2014 - 7:17 am

Deb - Bo and family
You have shone the Heart of Jesus through out this life changing time. May the miracles and peace of this season bring you strength.

December 11, 2014 - 11:31 am

Cindi Dunn - Oh, Bo!
I new on Sunday…THE VERY MOMENT I asked how you were doing that I shouldn’t have…and thought to myself how thoughtless it was of me, and WHY couldn’t I be more creative when greeting you! I have meant to message you all week, but a trip to Eugene yesterday and a variety of “the urgent” kept me from doing so until now…Please know from the bottom of my heart that I love you and DO NOT want to put more pressure/stress on your already maxed out heart! Large hugs, and prayers for you and your family today, and most nights! I wake up thinking/praying for you VERY often…the night watches continue! Amazed by His Presence….cindi

December 11, 2014 - 7:56 pm

Mike Briski - Praying for your family.

December 13, 2014 - 12:44 am

Laura - Blessings on your family! You are in my prayers daily, and have been for over 2 years now. As I was reading this entry I couldn’t stop sobbing, honestly I’m not sure what it is all about, but my love for your family has never wavered and never will! Even from a distance. Blessings on your family abundantly through this season. My heart is with you.

December 15, 2014 - 8:46 am

Jewl - Singing for you all a prayer of blessing, of hope, of joy, of peace . . . right in the middle of the pain, the losses too many to count, the confusing emotions, the overriding chaos, and the heartache so hollow and deep that you don’t know where to land with it, except that you do know, and you do it: you bank on the shores of the God who knows each of you best — again and again and again. Praising Him for dances in the kitchen and a God who gives minute by minute the strength and doggone fortitude to persevere . . . and do it one more time.

On worry for your kids: 39 years ago yesterday, on a Sunday just as yesterday was, the Lord took my mom swiftly as she readied for church. Whoa! What a service she experienced! : ) I was 15. It’s too much for you to foresee 39 years from now, but, just know, (despite what some of my peanut gallery friends may say ; )–I turned out as a person : ) I lost so much that day, but I gained still more through the years since!! Just like Abba provided manna in the desert, the Lord will EVERY DAY supply EACH ONE of your needs according to His RICHES in glory!

December 17, 2014 - 7:29 am

the messy, salty glory: on holding my breath during the holidays. - […] me, friends are receiving hospice care, others are calling 9-11, and some are receiving troubling […]

The Very Holy Now

 

Life is funny, you know? It’s funny in ways that make me laugh and cry and hope and hurt. It’s just funny. For several Christmases we have navigated the murky waters of this ALS storm. We have been treading water as we try to absorb the beautiful moments while anticipating a difficult future.

 

This year is different.  This year, the difficult future has invaded our present. Steve’s condition has rapidly declined over the past couple of weeks and he will be placed on hospice this week.  We are grateful for the resources and support hospice provides.  We are grateful for our kids and our friends and our home (which currently feels more hospital than house.)  We really are grateful, but we are also weary and heartbroken. And while I’ve sometimes been able to wrap those emotions into hopeful words, right now I feel surrounded by a sacred sort of silence. It’s not bad.  It’s just quiet here in my heart, where so many memories and dreams are swirling.

 

I am taking a leave of absence from my job for the month of December, so I can focus on Steve and my family during this important holiday season.  I will write when I feel it and I won’t when I don’t.  Today, I don’t.  But I do have something wonderful for you and it is this update from my friend, Michaela.  Remember her baby, Florence, who is Steve’s comrade on the neuromuscular disease battlefield?  Well,  Michaela’s baby, Teddy (Theodore Brave!),  is here and you should read this for a beautiful start to advent.

 

I hope your season is unfolding with grace and I am thankful for so many of the notes I’ve received to let me know you haven’t forgotten us and are still praying.  We do not sorrow as those without hope.  Especially at Christmas.

 

Because of Jesus,

 

Bo

December 3, 2014 - 10:53 am

Joyce Strong - Thanks for the update Bo. It’s good to know what your family is experiencing so we know how to pray.

December 3, 2014 - 11:18 am

Kristen Lunceford - Crying & praying for you while these lyrics play in my earbuds…

“Oh, the mercy our God has shown
To those who sit in death’s shadow
The sun on high pierced the night
Born was the Cornerstone
Unto us a Son is given, unto us a Child is born

He Who is mighty has done a great thing
Taken on flesh, conquered death’s sting
Shattered the darkness and lifted our shame
Holy is His name

Now my soul magnifies the Lord
I rejoice in the God Who saves
I will trust His unfailing love
And sing His praises all my days”

Counting on him to shatter even this darkness,
Kristen

December 3, 2014 - 11:30 am

Tracy Paul - Heart ache

December 3, 2014 - 11:36 am

Jillian Jeppsen - My heart is heavy-laden. Not because I don’t know who’s in control, but because I can only imagine what your going thru. I cry out to god for you bo and your precious children as you walk such a vulnerable place. I will be praying for you and Steve as God holds each of you in his arms carrying you thru this!

December 3, 2014 - 12:22 pm

Teresa B. - Thinking and Praying for you and your family during this time. Sometimes silence is best to hear Jesus. Tony and I may be in Redmond but remember we are here for ALL of you. Call us, text us, email us if you should ever need an ear…..or ANYTHING. :)

December 3, 2014 - 12:29 pm

Jane Lellman - I have no words but the hands of my heart are clasped in prayer….

December 3, 2014 - 12:45 pm

Shell Wells - Bo-
My heart is heavy for you all. Sending you prayers of peace and comfort as only our Heavenly Father can. Know that so many are lifting you up in prayer. Hoping you feel it. Xoxo
The Wells Family

December 3, 2014 - 1:05 pm

Katie - Have been following your blog since this summer. Just wanted to reach out at say that I’m so sorry. I can’t imagine what you are going through.

My thoughts and prayers are with your family.

December 3, 2014 - 1:18 pm

Joan Zeller - Love you Bo and Steve.

December 3, 2014 - 1:19 pm

Phyllis B - Prayers and love being sent your way.

December 3, 2014 - 1:29 pm

Steph Carmichael - Bo – Our hearts are with you as you navigate this path of ALS. Peace to your heart and mind in the midst of it all. We will keep praying for you, Steve and your family. Love and blessings,
Steph C.

December 3, 2014 - 1:39 pm

Jan Burkey - Oh Bo – my prayers are with you all! Praying for the Lord’s presence to bring you peace. Love you and sending hugs from the DR! Thanks for sharing! Give Steve my love too. Jan

December 3, 2014 - 2:36 pm

Ross & Patty Sisson - You and Steve are two of our favorite Spiritual heroes. We have never met either of you, but we have heard you both speak and read all of your blogs. How we handle attacks from satan is probably our most effective testimony. Your testimony is HUGE.
Thank you, and know that we are praying for your whole family.

December 3, 2014 - 2:39 pm

Kathryn V. - Continued prayers for you, Steve, and your family. I know it can’t take away the pain, but know that prayers are offered on your behalf every single day. May you be enfolded in His Presence and Love. <3

December 3, 2014 - 2:48 pm

Erica - I have followed your blog for years, Bo, and have cherished your words that often inexplicably intertwine hope and sorrow, joy and sadness. My heart aches for you and your family. I am so sorry, and I will be praying for you all.

December 3, 2014 - 2:57 pm

Karlee Strickland - Bo, we Stricklands are praying for you, Steve and your family. Praying for peace that surpasses understanding, for an abundance of hope, for strength in Christ, and for many really special joy-filled moments for all of you this month. We love you!

December 3, 2014 - 3:08 pm

Bev - Praying even now, and am so very confident that God hears the heart when there just are not words. Loving you…and your family.

December 3, 2014 - 3:22 pm

Wanda Stewart - Bo,
God Bless you and your family in this season!

December 3, 2014 - 3:52 pm

Edie - My love overflows for all of you, but words fail me – again. Mark and I are praying with deep groaning, which God understands, thankfully. Love and peace and strength and everything you need, in Jesus’ name.

December 3, 2014 - 4:12 pm

Gwen - I cannot imagine what you are going through. I am so sorry. Words a friend recently suggested when you don’t know what to say – but want to say something. (Thank you xo)

Loving you, and praying too.

December 3, 2014 - 4:21 pm

Phil - so very sorry. Love and prayers for you, Steve and family.

December 3, 2014 - 4:39 pm

Nan Christensen - Oh dear Bo, It is hard to say much of anything. We knew this day very well might come, but desperately prayed it would not. I do know that Hospice will help you all out tremendously. Team Stern has been so very strong (I think you might differ but it is true)Team Stern will continue to be strong long into the future. One time our son Sam (who is now 25}told me that Steve was the best pastor/teacher that he ever had. He said ” Besides Dad, Steve has had more influence on my life than any other adult ever did” Wow that is profound! I’m not sure if he ever told Steve or not, but share it with him please,I know it will bless him. Loving you all in Christ, and lifting you up in prayer Nan xoo

December 3, 2014 - 5:03 pm

Cathy Wood - Oh Bo…no words seem enough to express the cry of my heart for you and Steve and family!! Psalm 121:7b-8…”he will watch over your life; 8 the Lord will watch over your coming and going both now and forevermore. You once said you were preparing for heaven or healing…honestly still hoping for healing!!!

December 3, 2014 - 6:18 pm

Laurie - We are lifting your family in prayer Bo. hugs and Love to you all

December 3, 2014 - 6:22 pm

Kym Brown - Dearest Bo, Steve and family ♥ I will remain in prayer for your beautiful family throughout this season. With my love and hugs.

December 3, 2014 - 6:33 pm

Stacie - Please know that our family is keeping you in our prayers. Steve and Stacie Vogelsang

December 3, 2014 - 6:50 pm

Marsha Briggs - So need to let you know You Are All in our heart of His heart and our prayers. He Is able to make all grace abound as You continually reveal thru the updates.Thanks

December 3, 2014 - 7:47 pm

Angie White - Precious Bo, how wise and brave you are to take a step back and take the time to just be in the moment. Hold each other…sing…smile…laugh…cry…rinse and repeat.

One of the songs my son shared as we were letting go of our own ALS hero, Tim, was called Just Breathe. I can’t tell you how much music ministered to my heart. Especially when I had no words, God spoke to me through the words of others and the melodies carried us to a special place of intimate peace and sweet comfort. I pray the same for you and Steve and all the loved ones you both hold dear and near to your hearts.

December 3, 2014 - 8:22 pm

Barb Krumwiede - You are in my heart.

December 3, 2014 - 10:16 pm

Helen Campbell - Words spill out from many to comfort you, but yet fall short. Only the peace of Christ can help heal the woundedness.My prayer is for your warrior. May He see Christ in His sufferings and grow in hope that God will not forsake Him.May he rest in our Lord. I am so sorry.

December 4, 2014 - 3:05 am

Angela copley - We are new to westside but so appreciate your ministry of teaching and your transparency. We will begin to add our prayers to yours and your support network.

Angela

December 4, 2014 - 7:27 am

Kathleen - I am so sorry for your family. No matter how long the battle, the end is always hard. I lost my husband to ALS 18 years ago this month. You and your family are in my prayers.

December 4, 2014 - 10:26 am

Lisa Glenn - Bo -I can’t imagine this place, this season you are in. Our family lives in Woodland Hills, and we are part of the Bel Air Presbyterian Church community where I was also the Preschool Director (I resigned this month). In February 2014, my wonderful husband was diagnosed with ALS, now only having 49% Vital Lung Capacity. My sister, who lives in Oregon told me about you, your writing, and your website. I am sorry for the pain this type of journey causes, but grateful that we are both serving a loving God who is beside us and within our moments daily. You have inspired me, and I thank you for sharing so much about these years with Steve and your family. In the midst of your pain,it has been a gift to me to remember how close God is to us even in these days of trial. Blessings to you—Lisa

December 4, 2014 - 11:18 am

Julia Damazio - Prayers from Vancouver wa! Hugs!

December 4, 2014 - 7:06 pm

Debbie - Praying for your wonderful family.

December 5, 2014 - 4:07 am

Arlene - Praying the Holy Spirit envelope you, Steve, and your family in peace and comfort and strength.

December 5, 2014 - 1:36 pm

Jennifer Heacock - Prayers for the Stern family. My heart aches for you all. I am sorry.

December 5, 2014 - 3:56 pm

machelle tillery - Hello Bob, my name us Machelle and I want to tell u how I admire u and your husband! I am reading your book, “Beautiful Battlefields” and gave found my strength and purpose through your journey. My prayers are with u and your entire family and may God grant u peace and place a special supernatural deposit in you. Now in the name if Jesus I pray for tomorrow for YOU.

December 7, 2014 - 8:36 am

Sally - This post took my breath away. How did you get to this place so soon? I am so sorry

I too am a caregiver for my husband who has Early Onset Alzheimer’s The week before Thanksgiving I had to place him in a memory care facility. My heart is breaking.

May God surround you with His peace and mercy as you walk this unbearable path

December 9, 2014 - 12:50 pm

Hailey Hoiland - Oh Bo I’m so sorry. I am praying for you and yours.

Dear Stephenie

Stephenie is my amazing assistant and friend.  Today she’s getting married to her very own Steven.

 

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Dear Stephenie, 

This is the day that youth pastors live for.  We live for those rare moments when we watch God’s purpose stretch beyond the realm of potential and actually become reality. This day is possible because you said yes to His purposes before you could see them or feel them.  I’ve seen you wait and pray and plan and build.  I’ve seen you frustrated and lonely and faithful.  You’ve walked this season well and today? We celebrate!

 

 

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I know you, more than most, understand the truth about what a wedding is and isn’t. We’re not celebrating because this is the first day of a perfect life or because marriage somehow makes a person more worthy.  We celebrate because love – strong, sturdy love – is the stuff of God.  Real love defies the gravity of humanity’s sin and self-focus; it will be pressed by those things, but it doesn’t sink with them. In a culture of flash-in-the-pan success and one-night-stand romance, real love hunkers down for the long haul. It understands that the wedding is pretty but the lifetime is where all the power lies. Real love multiplies our ability to care and give and serve.  And when wispy, human love digs deep roots into the limitless love of God, that’s when we become both bigger and smaller than we ever dreamed we could be.   That’s when we discover that better and worse and richer and poorer and sickness and health are two sides of the same coin – a coin God can use to make us rich, no matter which face is showing. We find that our hearts are expanded beyond the breaking point and into the breakthrough point.  It doesn’t take long to realize that marriage is the laboratory where God does His best work on us, in us and through us…and also that sleeping together is just way better than sleeping alone.

 

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Steve and I love you and Steven more than we could ever say and we wish you both the most amazing day and remarkable life. May the beauty that brought you to this moment lead you every step forward.

Because of the One Who Loves and Loves and Loves, 

Bo 

 

When You Don’t Know What to Say

 

This morning my Facebook newsfeed was filled with updates from people going through such difficult, heartbreaking situations.  I spent thirty minutes, writing, rewriting, adjusting and writing again.   It was very difficult to think of the appropriate thing to say to my friend who is fighting brain cancer or my friend whose child is in constant pain or my friend who just lost her beloved father to ALS.

 

I’m so frustrated by this because I really thought that one of the few benefits of our crisis would be knowing what to say to others in theirs. But I find myself at a loss so often.  That’s when I land in the write-and-erase gridlock which leads to paralysis which leads to no response at all.  It’s ironic really, that some sweet sister fighting a fierce battle may be sitting at home thinking none of her friends care enough to respond when, in fact, many of them care too much to risk a wrong response. I’m sure many people who assumed I hadn’t thought at all about their struggle, would be surprised to learn how much I thought and agonized before clicking out of that little box without pushing “post.”

 

I’m sharing this today so that others will know they’re not alone in this fear of saying the wrong thing at the wrong time.  I am a writer and I often feel like I’m in the word weeds.  But I’m tired of letting fear silence my compassion, and so I’m learning.  I really hope I’m learning.  And while I don’t have an easy formula,  here are the guidelines I’m using when responding to people in pain:

 

1.  The closer you are to the person and the situation, the more latitude you have to speak freely.  If you are not a close, personal friend of the one in crisis, keep your comments brief and encouraging. Don’t offer advice unless it’s specifically been requested.  If you feel you have something important to share like a miracle cure or medical advice or a specialist they should contact, try going through someone who is closer to the person than you are, or send a private message. (And when you offer advice, always add permission for them to contact you for more information OR to disregard the suggestion entirely.)

 

2.  Avoid comparing your situation to theirs, even if your situations seem identical on paper. Honestly, I think it’s wise to avoid talking about ourselves at all in these moments…just focus on encouraging the other person.

 

3. I don’t think you can go wrong with, “I cannot imagine what you are going through. I am so sorry.”   

 

4.  Say something.  Because I really do think an imperfect something is better than well-intended nothing. People put stuff out on social media because – well, I guess I don’t know all the reasons people do anything – but I assume they put updates out there because they want to know they’re not alone. They hope that people will care and pray.  That’s all we need to do:  care, pray & love.  We don’t need to have all the answers or write the words that heal all their wounds.  The comments we say and send to people are, more than anything, a way of telling them:  I see you, I acknowledge your pain, and I’m here. We just need to be present.  And we can all do that, even though the words we wrap around it may feel risky and awkward – we can all be present.

 

 

 

With hope,

 

Bo

October 31, 2014 - 1:59 pm

Terry Hartke - Thank you for your spot on advice, Bo! Countless times I have agonizingly written a comment to someone who is in a tough situation….only to delete and not send anything at all. This helps!

October 31, 2014 - 2:36 pm

Angie - Yes! Thank you for this!
When my Dad and Grandma were killed I was in high school. I missed a week of school to be with my Mom and my brother who were still critically injured in the hospital. When I went back to school, most of my friends avoided me for several days. I knew these people loved me, and I knew they just didn’t know what to say, but I very much needed to be propped up by somebody… anybody… and there was nobody there.
I so much agree with you that saying something is so important. Even if it’s just a simple “I’m praying for you.” You just have no idea how much it helps to know that someone at least sees that you are hurting.

October 31, 2014 - 2:37 pm

Joyce Strong - Good words Bo. I would like to add, when on facebook, even hitting the “like” button is a good gesture. Yes, say something is so true. I remember vividly a friend of mine approached me after my dad died (so very many years ago),she had no idea what to say, but simply said “is it true your dad died?”. She spoke, she cared, and of all the words said hers is permanently in the memory bank of my heart.

October 31, 2014 - 4:12 pm

Sue Blake - Bo-you don’t know me, but I have been so encouraged in the past listening to you speak, and for that I thank you. I am so burdened for Steve, yourself and your family. I just wanted you to know I’m praying for all of you. In His love, Sue

October 31, 2014 - 5:38 pm

Linda j - Dear Bo, in my reading of Proverbs 18:13 struck me this morning in devotions. “Answering before listening is both stupid and rude.” We often feel compelled to say something, but often the best thing to do is listen well and sometimes speak to the pain, and sometimes the best thing we can do is cry

October 31, 2014 - 7:51 pm

Amy A. - As a friend who often flounders in the sea of “I’m not sure this is exactly what or when God wants me to speak,” can I please affirm point number 4? Because even if your friend hasn’t responded via social media, she is definitely SO grateful to be able to have the information she needed to specifically pray. Love you TONS and am constantly in prayer for you and your family, and am humbled and held accountable by the promise that. “…the prayers of a righteousness woman are powerful and effective.” Even if we can’t speak, we can continue to pray…

November 1, 2014 - 5:28 am

Dick & Teri - Bo & Steve & Family,
We cannot imagine what you are going through. We are so sorry. We pray for you regularly. With love.

November 1, 2014 - 11:43 am

Chris Newby - I was listening to Focus on the Family while driving to the max station to work and Focus on the Family was interviewing a pastor’s wife and mother of four who has terminal cancer. The doctor psychologist who was also on made the same point about saying something rather than saying nothing. How often I have felt that same really uncomfortable feeling of I won’t know what to say but also mercy and compassion for the situation. I am going to try to step out a little bit more and ask Jesus to make me honest and compassionate and not so many worries about the perfect way to say and do things.

November 1, 2014 - 7:36 pm

Krista - Last week when I was reading your posts about taking a break, I started to write a comment about a thousand different times. I thought I knew what I wanted to say but it kept coming out “wrong”. So I just deleted everything & instead said nothing. And now I’ve read this post and I’m encouraged to try again.

Here’s the gist of what I wanted to say in response to When The caregiver breaks & Taking a break from the battle:
I found your site this summer after I did the ALS ice bucket challenge. There was some negativity about the ice bucket challenge being silly and I was looking for validation that it was worthwhile –even if it just brought more awareness to ALS. I did the challenge, donated money & have been following your ALS battle ever since.

Thank you for sharing your innermost feelings about being a caregiver. It’s not easy to put your heart on the line & out there for the world to judge. Even for those of us who aren’t battling what you do on a daily basis, it was refreshing to read such honesty. Too often we sugarcoat things or downplay them so we don’t rile other people up. But we’re only human and life is hard. You write beautifully and I love reading your posts. And, while I have no idea just how difficult day to day lure is for you, I want you to know I think of you often & pray for you. Sending hugs and love!

November 2, 2014 - 5:08 am

kathy Gilbert - Thank you, Bo. Yes. I have done it. Our words can seem so right in the moment, as we write them down, but then when we read them 2 days later we can see that they may have been a little goofy.

Thank you for the great tips. You are such a great help to us.
Love to you…

November 29, 2014 - 2:30 am

Victoria - Excellent blog piece. My 16 year old daughter died in January and I need people to acknowledge my grief and loss.
Months ago I wrote on my Facebook page “If you meet me don’t worry about what to say, please just give me a hug.” That has worked really well – hugs have become the language of comfort for me.

The Dangers of the Battle Bucket

 

I think one of the most dangerous consequences of any fierce fight, is the way it shrinks our vision to primarily the soil of our own battlefield.  Sometimes I feel that if I’m not careful, I’ll get stuck inside an ALS bucket, where our issues are the issues.  It’s like living inside your own, personal 24-hour news cycle and all the stories are about medical stuff and caregiving stuff and insurance stuff and sorrow stuff.  And it can happen with any fight we face. I’ve known people who can’t last six sentences in conversation without mentioning the ex spouse who did them wrong.  I totally get why this happens, but I firmly believe I need to work to get rid of the dumb bucket rather than justifying its existence.

 

This is a challenge in blogging. Writing helps me process what I’m experiencing and connect some of the emotional dots. It also creates camaraderie between those going through similar situations.  I don’t think writing about our war is wrong; I just want to be so careful that I don’t become confined or defined by it.  While people often tell me that what they’re going through is nothing compared to what we’re going through – I actively and aggressively resist that idea.  The minute I begin thinking that I’ve drawn the worst hand available, I am just one short hop away from life in that bucket, where I am all that matters.  And…ew.

 

This morning, I read an article about the girls who were abducted in Nigeria.  And I read this strong piece from Sarah Bessey about the issue of sexualized violence.  Then I read a letter from the child we sponsor in Indonesia so she can attend school, and had so much  fun writing her back and sending her some Christmas money.  My coffee money for one week is her Christmas.  Her entire Christmas. I mean, l this is a child  – a real child with hopes and dreams and gifts an fears – who cannot attend school without the help of strangers. These are global issues.  Moral issues. Issues embedded into the fabric of our society that rampage and ravage tender hearts and innocent lives. We cannot support every cause or defend every victim, but I cannot live in a world where the only victim is me.  My life is hard, yes.  I’ve written about a million words on the nature of a villain like ALS, and I’ll write more.  But as I’ve also been processing burnout, I’m seeing that one of the best ways to stay clearheaded in crisis is to realize there’s a world beyond your war.

 

I cannot escape the battlefield of ALS.  It is the ground on which I live and fight.  But I will resist until my dying breath the natural tendency to build walls around my battlefield, that shut up our hearts and our compassion and our righteous outrage toward social injustices on the global stage.  This is not just right, it’s good. It’s good for my heart and my outlook.  It’s good for my family and our army.  It’s good for my future and it’s good for the world that God so loves.

 

Feeling stuck in a bucket today? Push your vision out beyond your playing field and gain some quick perspective.  And then do something.  Pray, send money, send a note, send hope.  Make a move in someone else’s war and see how it changes the landscape of your own.

 

With hope,

 

Bo

October 29, 2014 - 9:18 am

Dora - Oh, Bo, I so needed to hear this. Sometimes I feel trapped in these ALS walls and have to try really hard not to be resentful of those who are going merrily along their way having a wonderful life. I realize I don’t need to explain to people why my husband is in a wheelchair and/or can’t shake their hand. It’s not about ME and wanting sympathy! Thanks for sharing this much needed perspective.

October 29, 2014 - 12:07 pm

Susie - amen, Amen….AMEN!!! Bucket or not, we must stay relational – it’s how the Father made us.

October 29, 2014 - 10:33 pm

Joni Frances Thurber - First, I must say, “Jonifrances.com” is a work in progress, so please, you can judge my writing, but don’t judge the website, just yet.

Bo, I so agree with you. I think it’s early for anyone to judge your consumption of ALS and the battle you’re in. But, even given that, I believe there is nothing more powerful in its ability to move us along, than giving to others. We can do that in numerous ways. It doesn’t always mean giving of time or resources. Simply reading an excerpt from your blog and hearing your heartache that turns our emotion into prayer is removing ourselves from our own heartache, if even for a moment. Going a step further with actual giving of ourselves in some way will lift our head for a moment, and give us the sense that life exists outside of the small world we’ve found ourselves.

A strategy of looking up and out is good for all of us. For those in the battlefield, it provides one with that momentary sense of the life you may have known before the battle. For those who can’t shake the memory of an old battle, I can’t say enough about the benefits of looking up and out, toward someone else’s battle, bringing them along to health. In the process, God’s magic happens. In some cases, one might think it will take God’s magic to restore a broken heart, or broken spirit. But that’s why it’s magic, because it’s something only God can provide. No explanation necessary. When we give, we receive, and we heal.