It’s time once again for Steve’s quarterly ALS Clinic. At clinic, we sit in a room for four hours and a bunch of different specialists show up and do assessments to see how the disease is progressing and to address any issues we are experiencing. We currently see the doctor, the nurse, and specialists for physical therapy (lower body), occupational therapy (upper body), swallowing, speech, nutrition, assistive devices and breathing. As time goes on, that list will change and grow.
Other than one very expensive drug (which Steve has elected not to take), this clinic is the only treatment for ALS. While it doesn’t stop the disease, it does catch issues early on and helps the patient and caregiver address them, and it has been shown to increase the life expectancy in ALS patients for up to a year.
If you’ve ever loved someone who was diagnosed with cancer, then you understand how traumatic the “cure” can be. Chemo and radiation – while potentially life-saving – are also immediately life-changing and overwhelmingly expensive.
I’m so thankful that, though this is a rotten diagnosis, we have not had to spend long hours in hospitals or thousands on medicine. Steve has been able to enjoy his retirement, rather than being incapacitated by a treatment schedule and side effects. That’s not to say, however, that the clinic comes without trauma.
The weigh-in, for instance, is done on a scale made for a wheelchair. Steve is fine on his own two feet, but every time he stands on that big wheelchair scale it’s such a jarring reminder of where this could go. There is a bulletin board covered with the photos of other patients and it’s…difficult to look at. The doctors and therapists we meet with are trained to help us prepare for the future and so they are constantly nudging us to look further down the road than we want to look. The measurements that they do are graphed on a scale which is used to measure the ticking of the clock regarding lifespan and life-normalcy. All I can say is: ALS clinic is brilliant and brutal. It’s exhausting from every single angle: emotionally, physically and spiritually and from the moment I walk in, I fight the desire to escape the walls and halls and questions and photos and scales. I want to run out and back to the life we knew; the one where I lived always in the shadow of Steve’s strength, which never, ever wavered.
But this is our life. Our now. And there is grace for this. Inside the plan of God for Steve Stern’s days, He has something beautiful hidden inside the days marked Clinic. I know He does because He is God.
I guess this post is just to say: would you pray that I am able to find it tomorrow? To see it? Not just to hope or believe for it, but to truly see and taste and know the goodness of God, and rest in the shadow His strength?
Thank you.
For His glory alone,
Bo
Praying and believing that you WILL see the Lord’s goodness in the midst of this battle. You are a stunning warrior and I love you friend.
I am praying for you all—and praying specifically that those gifts of grace and beauty that are so desperately needed will stop you in your path and remind you Who holds all suffering and difficulty and who covers you with unending love and comfort. xo
Will pray for you both. love, Betty
I just wanted to let you know that both my daughter and I stand in prayer for your family. We don’t personally know you, other than through our church and the selfless moments when you share His truths and knowledge with us. His shadow will be a blanket around you tomorrow, lifting you up with peace, strength, warmth and the goodness only He can provide. I’m not just believing for it…because it’s already done.
I know just exactly what this is like. Cardiologist appointments and hospital visits are all too frequent in our “new normal” but God is good and He means it when He says He will never leave you or forsake you, not even on clinic day when He feels far away sometimes…..He’s near and waiting for you. Praying that you will see the clinic, doctors and nurses, and other patients through the eyes of God and that what you and Steve carry will shine so brightly that He gets all the glory.
Blessings and abundant grace and peace!
Yes. I will
Love you.
“Lord, Keep these two servants wrapped in Your Arms. Let tomorrow reflect Your purpose….”for the saving of many lives”! Thank you Jesus for being with my brother and sister during this difficult time. I pray they sense your presence throughout this day….”the day You have made”.”
AMEN!
I will being praying for your peace tomorrow. May the Lord bless you and keep you throughout the day
As a stunning daughter of God has blogged, God has been to our tomorrow, and i’m praying you will both feel Him greeting you there tomorrow.
“Yet I am confident I will see the LORD’s goodness while I am here in the land of the living.” Psalm 27:13
Praying
Love,
Arlene
The gift of Grace… praying that He will give you it all tomorrow.. standing up for you and Steve believing…
Bo and Steve. Praying, Health Be! That the Blessings of the Lord be upon every place where You set Your foot. That He will Most shurely bring You out into His place of spacious safety,protection,comfort, in His confidence of and for You.
Hi Bo..this is Gina Bloks mama…I love to read your blog. Is there a way I can get on your email list to get this site or is it based on going in on my own to read it? Loved looking thru your trip photos – it looked amazing! What a wonderful gift for all y’all to do this as a family.. thank you sharing your life with us. Its an honor to pray for you all. Suzanne
Holding you close within my heart and before the throne room of GRACE…..xoxoxox
Praying for you, friend, and your sweet hubby. Hugs to you!
Thank you, Beautiful Friends. What would I do without you? Your prayers enable us to stand when our legs feel weak and wobbly.
Look out, Mr. ALS Clinic, we’re coming for you!
My husband and I will be praying for you and your family today.
how comforting to know that He understands our need to run away and hide and has made a place for just that.
“Be merciful and gracious to me, O God, be merciful and gracious to me, for my soul takes refuge and finds shelter and confidence in You; yes, in the shadow of Your wings will I take refuge and be confident until calamities and destructive storms are passed.” Psalm 57:1
Love you dearest friend!
Reading this after the fact Bo, but struck by today’s post (Tasting and Trusting) that drew me in to reading the others I’ve missed. Looks like God has answered your desire to “truly see and taste and know the goodness of God”. He’s good, now and forever. Thank you for reminding us! standing with you all too xo
Praying through my tears of gratitude that you are able to know the goodness of God and rest in the shadow of His strength and that you will continue to be able to do so.
I might officially be a stalker now that I have commented twice. But…oh how I remember these visits. You wait to hear the new loss, you cry, struggle, pray, cry some more and then put your feet on the stability of Christ alone. You breathe in and out, and begin to walk, walking turns to running and life is off again. It’s new, it’s different, it is a life full of adaptations, but it becomes mundane … just about the time you go back and find out what else you lost.
I never clung to Christ like I did through those visits and my mother was never a stronger witness about the peace that is truly unexplainable.
Sweet Bo, you are now on our prayer list.
I don’t know if you need anything…I do understand.
-tonia booker