When I was young, my parents will tell you, I hated road trips. Hated. Them. They did everything in their parental power to make them a cool experience (including, but not limited to, feeding us brown sugar cinnamon Pop Tarts) but their tricks only worked for so long. Which in my case was about ten minutes. That’s when I would start asking “How long?” “How far?” “When will we get there?” “When can we stop?” “Why did we ever leave home in the first place?”
I love home.
I hate long car trips.
This season of our lives is like the longest car trip I’ve ever been on. I mean, really. The longest. Ever. And, as I mentioned in recently, it’s especially difficult to feel like Steve and I are in the same car but will arrive in different destinations.
Each morning, after I help Steve turn over and do the things that need to be done so he can gain a few more hours of sleep, I sit and soak in the quiet of the sunrise. I sometimes read my bible, but my capacity to focus on the amount and quality of sleep I’ve been getting is really limited right now. So, instead I think. And often what I think is: “How much farther?” And the answer is always: I don’t know. No one knows but God. Sometimes I’m able to sink into the security of His sovereignty, but lots of times I fight against it. I whine and wonder and “Do You know how hard this is?” and “There are not enough pop tarts in all the world to make this road trip worth it.” And when my words are exhausted and my emotions grow weary from the wild flailing, I land back at this truth: My Dad knows where we are, where we’re going and when we’ll get there. He knows. And it’s in this truth alone that I am able to rest right now. That’s not an overstatement: this truth alone.
Steve is having a rough week. He is in a lot of pain and we are trying to manage it the best we can. I won’t list all the obstacles we face in effective pain management, but they are many. ALS is not typically a pain-producing disease – but the consequence of having no muscle to cushion bones and joints is first discomfort and stiffness, which has now become full-fledged, level 10 pain. In addition, his breathing continues to weaken and grow more and more laborious. Sometimes I watch him and just wonder how he makes it through each day, but he is strong in ways I never dreamed.
I, on the other hand, have been having a good week. For no apparent reason, I feel secure and solid. I feel held. I am sticking close to this feeling because I don’t know how long it will last. If you’re yelling at your computer screen right now that I should trust that this feeling can last ALL the time, I’m going to yell right back: seasons of sorrow and frustration happen. They’re part of the trip and I don’t think they are, overall, connected to my level of faith. I think they’re mostly connected to my love for my husband, extreme levels of exhaustion and my (in)ability to carry all the things that are in my world. Even when they are connected to my level trust in God, they serve as an invitation for His comfort to meet me there (Matthew 5:4). The good days don’t last forever, but neither do the rough days and this is a great hope to my little heart.
So, I guess, this is where we are. Hard week. Strong week. Faith. Frustration. Sorrow. Security. So many things swirling right now, but God is the God of them all. Of us all.
Thank you for your prayers and love. Thank you for sticking so close to us through the stormy seasons. We love you beyond reason.
With hope,
Bo
Bo, you are an amazing person and I know you’ll immediately deny it, but you truly are. I feel very fortunate as I go through my own storms and struggles right now to have “found” your books, your site, and yes, your faith. Your honesty, humility, vulnerability, even your questions all make it easier to accept my own fights and my own questions. It may not always be such great comfort as you and Steve go through this journey, but you are being used in great ways by God. Random, unknown, striving hearts such as my own are finding your words and faith is being strengthened. I, among many, many others I’m sure, thank you. Prayers, my friend.
Bo~ very moving and profound words. Your honestly and perspective always, always challenges and inspires me. Sets my perspective back where it should be. Our Father does know where we are and the length of the journey……Wow!
Bo, your words are beautiful in the midst of pain. I wish I was near you to give you a hug and cry some with you. ALS is no picnic! One day Bo, one day sooner than it feels, we will be singing and dancing again with our Lord and Savior! Praise the Lord he came to rescue us from all of this pain and sorrow! Hugs to you and your family from the Epps!
Yes, Bo, you are strong, even when you don’t “feel” it and we are standing with you, especially in the times when you don’t feel it. Thanks for telling us the good and the hard……but you do know that you guys are making the same destination, right???? Just different time frame, but same destination!! 🙂
Love you so much and can’t wait for my turn to come hug your neck.
Hi Bo. I have been praying for you, Steve and your family for quite some time. I had the honor of praying for Steve when you came to our church in Mac, New Horizons. Since then, I include all of you regularly in my prayers.
My husband has had a quad. Bypass, aortic valve replacement and kidney transplant, with many side effects and other ongoing issues. His arteries are plugged again and there is nothing the docs can do because his veins and arteries are shrivelled. His new kidney is also going downhill. I tell you this simply to let you know I understand the life of total dependency on our Father God. Ralph, unlike Steve, can still function on his own so I do not know the pain, frustration and lonliness you are experiencing on that level.
I do know, however, that there are days that even living “one day at a time” is overwhelming and totally exhausting. I am so thankful for the ever-loving presence of God that gives us the ability to survive one more day and live on. Why hasn’t Steve been healed? Why does your mom continue to suffer with her back? I don’t know. No one on earth knows. We know sickness and disease were conquered by Jesus’ death and resurrection and we know countless people have been healed. Why some and not others? Great question and no ready answer.
I just know this one thing. Jesus loves me. He loves you, Steve and your family. Though He slay me, still will I trust Him. I don’t know what today will bring but I know He is with me all the way.
I have a friend who just lost her daughter. Cancer. It was a horrible blow for many people, including me. All we can do is continue to believe, trust God and have so much faith in Him that it defies logic and definition. I know that is what you do.
Strength and peace to you, Bo. So many people are standing with you. Keep on keepin’ on. We’re keeping on with you.
Praying for a better day!
Dixie
Praying for you! Thank you for so very honestly opening up your lives and your journey to the rest of us.
Bo, praying for you and your family. Sending love and hugs!
Just prayed for you, and will keep doing so. You and Steve are heading to the same destination, it just seems that you might be arriving at different times. And I believe you will each be walking hand in hand again one day (no more sorrow, no more pain.) Will keep praying for peace, strength, endurance and comfort for the journey. I pray God enfolds you and your family in His comforting hugs in the best way He can.
Bo,
I love your messages. As one who has ALS, I hurt for my wife as I am sure Steve hurts for you. I love your honesty with the fears and the hardships. I absolutely love your faith and seeing how you work it our through fear and trembling. You and Steve encourage me in so many ways, thank you.
I did not choose this but am thankful God has allowed me to share our faith through this trial and to come across your blog. You are blazing a trail for us to follow and grow from.
Thank you and God Bless,
Doug
Bo, your willingness to be authentic and vulnerable is inspirational. I’m sorry for all you and your family are going through. Through your sharing I find hope.
Bo, it is honestly so refreshing to read about the things you’re processing and the vulnerability with which you relate them. I feel so weary and so guilty in my wondering, “How much longer?” sometimes….but you remind me that we are on a course pointed Home and that it is natural and even beautiful to sometimes crane our necks to see if we can glimpse the home stretch. Oh, to hear the words “Welcome Home, good and faithful servant…” The thought of it for Steve makes all of the suffering with/in Christ richer. Blessings and God’s warm mantle of comfort pulled over you, my dear friends.
You remain articulate and open, and when I read your heart there on the screen, I feel honoured to have heard your story, and how God keeps providing His goodness throughout.
It’s hard and inspiring all at once.
You can be sure you have our prayers and our hearts, even just screen to screen.
Hi bo ,
I am a carer of my hubby ray . He’s. Had MS for 30 yrs . I understand how hard it gets sometimes . Your words resonate with me , I go through all these emotions regularly . It’s so hard at times . But like you I know The Lord and would be dead without Him . I am feeling exhausted at the moment , weary of the illness . Have come away for a few days rest at a retreat house . I have been saying to The Lord this week “How long Lord ” I feel as if I can’t go on another minute when I get like this , and then He comes and gives me more grace . I have raged and screamed and cried many times . I have had many days of joy though as well , joy I never thought possible in my situation . Bless you , I would love to be in touch with you so we could encourage each other
Godbless you both Yvonne x
LOVE this, and you! Your path is yours and while others might have great intentions and thoughts for you, only God knows all the answers and how to lead you best.
Huge hugs, my friend! So proud of you!