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A Day in the Life (and a Call to Live)

My husband is in bed when I leave for work.  I remember all the times he had to catch the early (early!) flight out of Redmond when he was working and how he never, ever forgot to kiss me goodbye.  I try to always remember, too.

 

I leave breakfast and lunch out for him before I go. It sits on a low table because the counter height is difficult for him. It’s hard to get his arms to reach that high.

 

He gets up and works hard to get dressed.  What would be a two-minute nonevent for anyone else is a long and grueling task for him.  On my days off, I help him so he can use his strength on more important things.

 

I am the only working parent now, so he is alone a lot.  He reads and prays. He watches baseball (go Cubs!)  If one of the kids is home, he putters around the yard, telling them what weeds to pull and which plants need attention.  He loves the yard.  He actually just loves nature in every way and his feet are tanned so dark from all his time in the sun that they always have bright-white flip-flop lines.  Our home is blessed with many little outdoor sitting areas, where he listens to Andrea Bocelli and watches the deer that visit regularly.  (I hate those dumb deer.)

 

Occasionally, he meets a friend for coffee, but it’s increasingly difficult for him to be heard and understood in a crowded environment, so sometimes his friends come visit with him on our deck.

 

I get home from work around 4 or 5 and I go downstairs, where he has spent most of his day.  He sees me, his eyes light up and he always says , “Hello, beautiful.” Always.  Those two words are home to me.

 

I sit and tell him about my day.  I tell him about meetings and things I’m studying for and he listens and gives me advice.  He’s always been very generous with advice. Heh.  I don’t ask what he did with his day- that wouldn’t be a fair question – instead I ask how he feels.  Sometimes he says it was a strong day and sometimes not, but he’s pretty honest with me about his strength level.

 

On this particular day, his phone rings as I go upstairs to make dinner.   I hover  at the top of the stairs, listening to his voice.  Even though it’s been weakened and altered by ALS, it’s still the most beautiful, soothing voice I’ve ever heard (true confession: sometimes I call his phone just to hear his voice mail message which was recorded long before life changed so dramatically.) He is talking to a friend who is discouraged.  My beloved says repeatedly,”God’s plan is still sure.  We believe in you.  You can do this.”  I squeeze back tears as I eavesdrop, not because I feel bad for the friend,  but because I’m in awe of a man who can live with so little and still  give so much hope.  “Tell your wife we love her,” he says as he hangs up the phone and I feel desperate to serve him…to do something that would lift the weight he carries or make his day feel less like all the other days, but I all I can do is ask if I can get him anything.

 

He smiles and tells me the story of his friend and how he believes that guy is going to win.  “He’s on the right track, Bo,” he says, “I’m proud of him.”  If Steve is proud of him, than so am I.   I take him iced tea with lemon because lemon helps him swallow more easily and I wish that tea was the magic potion that would build back his muscles and his voice and his future.  But it’s just tea with lemon.

 

I’m not even sure why I’m writing about this tonight.  It’s not to say that ALS is bad because no one needs another post about that, and it’s not to deify Steve.  He’s a regular guy with regular weaknesses and many imperfections.   I guess I just wanted to say to myself first of all, and to anyone else who might need to hear it:  life is always possible.  I’m watching my husband keep a relentless, heroic hold on life while standing in the of the valley of death.  It might not look heroic on the surface, but that’s because I’m weak with the words…not because he’s weak in how he lives.  He is strong.  I think I’m just feeling pinched by the truth tonight that if he can really live, then so can I.  And so can you.

 

We have strength in our muscles and breath in our lungs. We have jobs and arms and voices.  We have weeds to pull and friends to cheer and hope to give.  Let’s live.

 

 

 

 

July 16, 2013 - 8:22 pm

Steph Nelson - This was a beautiful post, you are both so brave and strong and I am so very thankful that our paths crossed. Even if it’s just through your posts. Thank you for inspiring me. Thank you both.

Love you.
Steph

July 16, 2013 - 8:22 pm

Rene - Such a perfect post. So much love.

July 16, 2013 - 8:32 pm

Patti Jacobs - Thank you Bonnie, I really needed this today!!! 🙂

July 16, 2013 - 8:35 pm

Nita Belles - Ummm…feel free to deify him, and yourself, because that’s what I’m doing. You two are amazing in how you live and love and lead. We love you both with all of our hearts. Really.
Dan & Nita

July 16, 2013 - 8:48 pm

Rachel - Weeping at a Bend Elks game… Beautiful, Bo. Love to the both of you.

July 16, 2013 - 8:52 pm

Debbie Clothier - Bo, thank you so much for sharing your heart today. Each day, each post I am blessed beyond measure and so thankful that you allow the Lord to use you so mightily.

We were blessed to meet a couple several weeks ago who’s vehicle broke down and they ended up (God directed) to our shop. As her husband struggled to get from the vehicle to the lobby I was reminded of my mother-in-law and Steve. The wife and I chatted for quite some time.

I hope it is okay to forward your blog onto her. I believe it would be a great support and encouragement to her.

Much hugs to you, Steve and your family.

Deb

July 16, 2013 - 8:55 pm

Linda Gregoire - My car has had more tears shed in it and more prayers said in it. It’s my own sanctuary. I find it more and more difficult to leave my husband. When I do I usually cry the whole way to work and can hardly wait to get home. There’s no place like home with my Hunny <3

July 16, 2013 - 9:03 pm

Kathy Dolyniuk - Moved to tears. I remember a beloved friend (the one who led me to the Lord) as her body slowly shrunk and weakened from liver cancer, her spirit grew stronger and stronger and I could only recognize her by her voice – her beautiful laughter. I think of you and Steve like that – so strong in spirit – so strong with living each day as it comes. Thank you for sharing Bo.

July 16, 2013 - 9:18 pm

Jalet - I started to read this post earlier twice today, but I knew I would cry, with either good or bad content in its words, and I just had to get through some things before I gave myself permission to be tender and listen to your heart, your life, your moment. The words you ache to type are not the words that reflect the ache from your heart, and yet the words of life that Jesus gives to you in this deep valley seem to call out a special softness in the echo. Your words, your heart, your moment to moment, do not fall silently on my heart; they break it open like the beating of a bass drum, and I find myself both in awe, and in prayer over you. Your honesty is always refreshing as you speak God’s truth. Thank you for being brave enough to do that on on the battlefield of life.

July 16, 2013 - 9:35 pm

Steve Woolley - Hey You Two,
It’s been a couple of years since I was last in Bend. I had hoped to spend some time with you Steve, but allowed other things to get in the way. Oh, how I have regretted that!
Our love to each of you,
Steve & Lynne

July 16, 2013 - 11:07 pm

Sarah - Thanks for releasing encouragement through vulnerability!

July 17, 2013 - 4:18 am

Karen Styer - Thank you for sharing Bo what life brings to your home and family and how you and Steve look to God for the strength to go on and live.
Although for me it’s not the physical I battle as much as the mental and emotional but your words Bo had the strength of God in them LET’S LIVE!!!

July 17, 2013 - 6:53 am

Karla (Ratter) Jeltema - Tears flowing down my cheeks, I am truly thankful for every second you two have together and wish that I was closer to spend a few of those seconds with you. Hugs to both of you.

July 17, 2013 - 6:56 am

Keith Rutsky - I really feel for you and Steve. It is obvious that you love each other and I sincerely hope that what time you have left with each other is as warm and loving as possible. I love my wife and also enjoy calling her cell phone to hear her voice. Love is a wonderful thing and I am happy you have it with Steve.

July 17, 2013 - 7:09 am

Eleanor Stern - It’s so good that you can put in words how you feel – about yourself and about Steve. I don’t have that free a flow of words, you have that gift, and it makes people understand exactly what you both, as well as the resst of your family, are going through. I’m convinced that some of the reason God has allowed this is because of the great blessing you both are to so many who are going through tough times. When they hear or see, they are reminded that what they are going through is not so bad, and if they can do it, I can, too. Bless you both – and ALL LL LL my love.

July 17, 2013 - 7:27 am

Faith Pray - Thank you so much. Even your “weak” words are a blazing standard for me – the flag I look to in battle to help me remember Who I fight for, and Who is with me, even when I feel afraid of the unknown. Thank you.

July 17, 2013 - 8:04 am

Launa - First time to your blog. Wow, beautifully written.

July 17, 2013 - 8:27 am

Maggie - You said you didn’t know why you wrote about this particular thing at this particular moment… I think I might know, God used you to speak into my life, so that I might remember to live fully while walking through my own valley of the shadow of death. Thank you, such a beautiful post, you definitely are people with beautiful hearts!

July 17, 2013 - 9:28 am

Karen - I was so blessed to listen to Steve’s voice at the Well Conference and I agree – it’s soothing and exudes a confidence that comes from a deep faith and trust. I’m just sitting here and my voice in my head is screaming “Can’t you work from home?” I guess I don’t want you to miss a minute with that fella. Blessings dear ones!

July 17, 2013 - 9:45 am

Roxanne and Jim - We prayed for Bo and Steve this morning in our devotions and then I read this! God is faithful and you are blessed and wise to be enjoying the simple moments! We know that you have a close faithful army but are here as reinforcements if there is anything we can ever do Bo. We love you!

July 17, 2013 - 9:51 am

Kendra M - I can’t imagine what strength it takes to leave him every day. It is humbling and inspiring the amount of weight that you bear on a daily basis. Thank you for sharing your human experience. May God’s mercy and grace be ever upon you and your family.

July 17, 2013 - 10:35 am

Claudia Lee - Thank you for this post. My challenges fade in comparison and Steve’s sure servant heart and your heart to serve him are a great encouragement.

July 17, 2013 - 11:19 am

Alisa - Bo, this was beautiful! It brings such glory to God and such encouragement to me. Encourage actually means “to put courage into.” And that’s exactly what this did! It gave me courage to face another sad day, trust God with it, look for ways to bring Him glory, and live with the time I have. Thank you for writing this, and thank you for the boost of courage that your precious husband’s example has given me. Hugs

And P.S. (you are wrong…you ARE a writer and you have such a gift with words)

July 17, 2013 - 12:52 pm

Debbie - Wow!

July 17, 2013 - 1:40 pm

Nan Christensen - After reading your words Bo, touched and amazed as always, I read the comments, and how much of an impact you, Steve, and your kids have on so many. Then I realized that hundreds of more (at least), do not comment, but are still blessed by the writings of your journey. God is using you guys way big, stay strong.
Oh, and btw… thanks for using font large enough, I can read it without my glasses, did you get the new phone book?

July 17, 2013 - 2:28 pm

Barbara - A beautiful post

July 17, 2013 - 6:43 pm

Valerie Caraotta - Dear Bo,
Because it is just about more than you can bear you have chosen to lean on the Lord. Many do not and run from God often permanently. Thanks for teaching us to press on even in the midst of your own pain. It’s the love of God working through you. There are upcoming years we will reflect on our journey as we too have a battle that is bigger than us. Thanks for planting early seeds in our hearts today for our tomorrows.

July 17, 2013 - 6:46 pm

bo - Thank you EVERYONE for your kind comments. I so wish I had time to respond to each and every one of you, but it’s a busy, weary day. Thank you for reading, for praying, for encouraging and for loving us through the thick of this battle. You are strength for us and we are overwhelmed and grateful. Please just know it.

July 21, 2013 - 9:06 pm

Edie - Thank you Bo, for sharing so honestly. Love you and Steve so much. I can’t say it better than everyone before me, so I’ll just say once again, thank you.

July 21, 2013 - 9:30 pm

anita - Bo, I hardly know you and Steve but I love you both.

July 21, 2013 - 9:32 pm

Veronica - Bo,

I did not even know how to begin to express how this post touched me and then I read this comment: “When they hear or see, they are reminded that what they are going through is not so bad, and if they can do it, I can, too.”

You are an inspiration! Keep inspiring! My valley is not nearly as deep as yours and you have reminded me that I know whom I have trusted and He is faithful – no matter the outcome.

Thank You!
Veronica

July 23, 2013 - 6:55 am

deborah Gentry - An overwhelming love for you both!

August 2, 2013 - 11:52 am

Jenni - This reminds me of something you posted on facebook a couple months back. I will never forget it…

“Alive is a gift.”

Thank you for the reminder today!