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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 12, 2014 - 2:31 pm

Sherry Coleman - Thank you for sharing this journey with us. I don’t know you except through your blog, but I appreciate the insight you provide. I thought of you today when I read a post from Bill Elliff, a college friend of mine who is now a pastor in Arkansas. His 97 year old father passed away this morning, on the same day that his son is graduating from seminary. Bill wrote a longer blog, but I love these paragraphs, especially the C.S. Lewis quote–

“Early this morning, on Josh’s graduation day, I received word that my Dad had graduated too! Passed the final exam and moved into the work he had been prepared for since before the foundation of the world. He will now do his real life calling. C.S. Lewis spoke of heaven as that place where “the creative functions of man, now freed from the clogs of matter, begin to try their wings.” Dad will now discover that his brief earth-days were simply preparatory for that which he was designed to do.

And what a joy to see those he loves! To be released from the bondage of his body that was filled with pains. To completely shed the heavy weight of guilt and regrets that we all carry. To be gloriously reunited with previous graduates. And to gaze directly on the Blessed Face of the One who sits on the throne and the Lamb at His right hand!”

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 […]

December 31, 2014 - 10:24 am

Deb Stewart - Bo, I am so deeply moved by your grace. And while I know that you may not feel graceful or poised in most moments, it is most certainly shining through your words and your faith. Thank you for your honesty, which is both “beautiful and brutal”. ALS is in my family also, and it has been devastating. But the Blessings that have arisen from the suffering have been countless. I will continue to pray for Steve’s comfort, your children’s peace, and your strength. I think you are a beautiful and remarkable woman. Your story honors us.