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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.

May 26, 2015 - 6:23 pm

ARenee - Bo, it is often with bated breath and heartfelt prayers that I wait earnestly for each and every one of your entries. Thank you Steve and Bo for sharing this painfully beautiful journey with us. Our family also has traveled this very same road, scaling strikingly similar rugged terrain for 11 years. My sister fought valiantly and we were blessed to see her obtain the prize at the end of her race as she gracefully fell into the arms of Jesus. What greater victory is there?! Praying your strength in our Father as you both press forward, clinging to the Rock and to each other. Your family will remain in my thoughts, my prayers and in my heart always. In faith & With love.

May 26, 2015 - 6:58 pm

Angie Small - Wow this is so powerful Bo. Thanks to you and your family for showing
God’s grace and love and truly leaning on him daily. Blessings and prayers
For this wonderful family.

May 26, 2015 - 11:35 pm

Angie White - sweet Bo, your words take me back to when I was where you are, but with Tim. Take snapshots in your mind of each moment. You are right to not forestall, because none of us knows how much time we have, but we all should remember our days are limited. Reminisce with Steve. Dream with Steve. Make promises to Steve and for Steve and for yourself. Continue to live and laugh and love. Cry if you must. Laugh when you can. Lean on the Lord always. Praying abundant blessings on you all, Team Stern…and everyone else who shares your sorrows and joys.

May 27, 2015 - 7:31 am

candy kaloger - I cry when I read this. Someone else knows and puts words to our month of May. May filled with pneumonia. Week after week of green stuff laboriously suctioned from lungs that are so fragile. He is so fragile. Still big and looking strong but so easily hurt from gentle touches. I pushed too hard this month when I moved his ankle in circles to keep them from stiffening. I sprained a toe. He cried in anguish. And so did I. “sorry. Sorry. Sorry”. Cannot say it enough. He forgives and forgets and moves onto another breath.

I sat on the floor this past weekend. He bent his chair back to be even with my head so I could hear his raspy voice. He pushes out words so I can hear. we talked about our friendship. I told him some of the hurts I’ve had in our decades of friendship. He said he was sorry. He could have been a better leader. Should have known, seen my hurt. A dying man apologizing for a not perfect relationship. Wow! He is my amazing friend, husband, lover of my life.

He texted me today when I went to bible study. “I miss you already. I love you.”

“I love you back,” I wrote. “I Miss you but I have you in my heart, my thoughts, my soul, forever and ever.” I will treasure this past Saturday as if it summed up our time together. I told him secrets, revealed my pain and joy.

My caregiver has been sick with whooping cough. Thank God she did not bring it here. It would have killed him. I have picked up day and night shifts. I can do this, I think, until I hit a night like tonight when I ache and am so tired but I can’t quit.

It is the joy of the Lord that is my strength. We will go where He leads.

Is June his last month? It could be. Hospice would think it could be. But we will take each day. Not the past. Not the future. Just today.

candy

May 27, 2015 - 8:06 pm

Karla Kantola - Bo, I have been following you beautifully written journal through my friend Connie Anderson. You and your husband are so fortunate to have the loving relationship that you have. Consider yourself blessed to be there for him while you can. I cared for my mother in our home for 6 years before she died of Alzheimer’s. I knew it would be difficult and it was, but I chose to do this for her and considered myself blessed that I could help her through this awful disease. In her final days I found her at times reaching toward heaven and communicating with people. The hospice nurses who had seem the same thing many times told me it wasn’t the Alzheimer’s that was driving this behavior and now I believe them. My mother wasn’t a religious woman so I considered it a gift to be part of this transition. It brought me closer to God. It is never easy to part with a loved one. It sounds like you both have had a tremendous struggle. Life isn’t fair, but I hope you will look for the little gifts God will show you in the days to come. My love and prayers go out to you both. Karla

May 27, 2015 - 10:37 pm

Debbie - Dear Bo and Steve, You are in my thoughts and prayers often. Sending love to you!

May 29, 2015 - 6:45 am

Janet Belden - Dearest Bo,
You have touched my heart and soul in so many endless ways. I have been praying and searching for one who understands my journey, my daily walk. My husband had a massive brain bleed last year, and is now in a wheelchair, out of work, and dependent. He was an avid slalom skier, snowboarder, hunter, fisherman, never watched TV. We have been married 27 years with 3 children. (2 boys that have really struggled losing their strong Daddy figure). I am a labor and delivery nurse, but now wear the hats of caregiver, business owner, single parent (in many ways), bill payer, etc etc. All of which you totally get. I know I can’t begin to understand your battle, but I want you to know that Your book Beautiful Battlefields as well as your blog have helped me continue in this walk before me, as well as continue to unearth the Beauty that could only be found in this time. I am seeing and living the blessings before me. Finding JOY in this place yet, still have my days of wrestling and grieving. Just wanted you to know that your journey is touching me deeply and profoundly and helping me to do this thing with courage and endurance. Thank you for sharing all you are walking. You have my prayers and admiration.
Janet

June 2, 2015 - 9:00 am

Heidi - Bo, God brings you to my mind often, and I stop to pray for you and your family when that happens. Even this experience you are going through now is your ministry – touching many lives of people you do not even know! Thank you for sharing your story and your life with all of us, and for your books. I live in MN, and first heard of you on Live the Promise with Susie Larson.
I keep your book Ruthless in my bag that I bring to work every day. I know it’s there if I need some encouragement (to read during my lunch breaks). I’ve shared some of the devotions with my 23 year old son and with my husband. They really like the messages and scripture.
God’s protection and love over you and your family today- stopping to pray for you again right now!

June 7, 2015 - 2:20 pm

Michelle C - Oh Bo & Steve..keep fighting. Your words mean a lot to me and I hope it is a comfort to know that so many of us keep you in our thoughts and prayers. My husband is unwell also and it is so hard to know how to help. Thank you for sharing a little of your lives with us.