I stand beside my son’s bed at two in the morning. A breeze sneaks through the window and lifts the curtains. I watch for his chest to rise and fall. I watch and wait.
He lies on his back, one arm flung over a huge stuffed penguin, the blankets balled at his feet. My eyes trace the small tube snaking out from his back to the pouch attached around his waist. The tube that means life or death.
He sleeps, and I do not.
I pull out his blood glucose meter and shove in a test strip. I wait for the beep. I take my sleeping boy’s finger and make him bleed. Rough fingers, calloused from poke after poke after poke. He does not wake; for him, it has become a familiar suffering.
But for me, the pain will always be fresh. My son was diagnosed at six-years-old with Type 1 diabetes. A little boy — happy, innocent, beautiful, with an immune system that destroyed his pancreas. It isn’t fair. But when is life ever fair? So, day after day, night after night, I fight a disease that could steal his life in a single night or steal it over years.
I hate it. No cure, no cause, no prevention, and no life without the insulin that his own pancreas will no longer provide. I provide it now. If he has enough, he lives. Too much, he dies. It is a delicate dance, every minute, every hour, his life held in the tiny vial of clear liquid attached by tubing through his skin.
So I stand in the darkness and listen to him breathe. I test. I hope. I fight the fear. Will the number be too low? Will it be too high?
I sigh and gather his blood on the tiny test strip. I count to five. Five long seconds that feel like a spin of the roulette wheel. Five eternities because I am no gambler. And like roulette, there is a number — 75. Too low. I am not a winner tonight.
I shake him. “Jayden, wake up.” He groans but doesn’t wake. I pull out a piece of dried fruit strip and shove it into his mouth. He chews, eyes closed. I watch for him to swallow, to make sure he does not choke. Ten seconds. Twenty. His throat moves.
I breathe again. The life of my precious son, hanging in the balance of blood sugars.
This is the pain I endure, the suffering I cannot escape. Day after day. Night after night. An incurable disease. A beloved son.
But my pain is not unique. It’s no greater, no less than yours. A lost job, a broken marriage, an estranged child, an untimely death, a scary diagnosis, an incurable disease. None of us get through life unscathed. None of us live life just as we wish it.
So, I stand here watching, waiting, hoping and afraid to hope, and I wonder, What does it mean to encounter Christ in the dark? What does it mean to live a life of faith when life is scary, and you can’t see your way? How do I walk through each day, each hour, each minute of a life that hasn’t turned out the way I’d dreamed?
Sometimes I have no idea, but then I remember Bartimaeus — a blind man sitting in the dark on the road from Jericho to Jerusalem. A man who didn’t let blindness, bad odds, a hopeless disease, scorn, fear, doubt, or despair stop him.
From Bartimaeus, I learn five things about finding God in the dark:
1. Listen for Rumors of God
When Bartimaeus was sitting in the dark on the side of road, he wasn’t focused on his problems, his lack of resources, or his poor chances of being healed. He was paying attention to any sign, however small, of hope. When the crowd passed, he was listening so carefully that he heard the name of Jesus of Nazareth. It only took a rumor, a whisper, a hint of God coming near for him to begin to shout for mercy.
2. Persist
As soon as Bartimaeus shouted for the Son of David to have mercy on him, the crowd tried to shush him. But (and I love this) instead of being discouraged, he shouted all the louder.
3. Throw Off Your Cloak, He’s Calling You
When Jesus called out to Bartimaeus, he leapt up and threw off his cloak, the very garment that he used to catch coins when he begged. He cast aside his security, his “back-up plan,” and even though he was still in the dark, he made his way to Jesus.
4. Know What You Want
Jesus asked Bartimaeus a simple question: “What do you want?” Without hesitation, Bartimaeus answers. He didn’t want power or prestige (unlike James and John, who were asked the same question just a few verses before Bartimaeus’s story). He just wanted to see. He wanted to see Jesus. Simple as that.
5. The Right Prayer
Jesus opened blind Bartimaues’ eyes, and the first thing he saw was the face of Jesus. Just Jesus. Because “Lord, I want to see,” is the right prayer for us all.
In our suffering, in our pain, let’s look to the One who can heal us, the One who asks us what we want and answers our cries. Let’s pray, Lord, in my fear, in my darkness and doubt, I want to see Jesus. He is enough.
Leave a Comment
Claire says
My heart goes out to any family who has to struggle with this awful disease, particularly when it rears its ugly head in a young child.
Marlo Schalesky says
Thank you!
Michele Morin says
This vigilance over a number that means life for your son must be completely exhausting, and my heart goes out to you, but I also honor your commitment to finding the spiritual parallels that make the journey transcendent. As a result, I am pushed toward that Bartimaeus prayer for the heavy places in my own walk where what I really need is a vision of Jesus.
Thank you, Marlo, for this beautiful glimpse of your following life.
Marlo Schalesky says
Thank you, Michelle.
Beth Williams says
Marlo
Praying for you & your son. May God bring some calm & peace to you all. We will all have trials & tribulations in this sinful world. We can be thankful that God has overcome this world. This reminds me of the song by Mandisa “Overcomer.” Some lyrics include: “Whatever it is you may be going through I know he’s not gonna let it get the best of you You’re an overcomer Stay in the fight ’til the final round You’re not going under ‘Cause God is holding you right now You might be down for a moment Feeling like it’s hopeless That’s when he reminds you
That you’re an overcomer You’re an overcomer” God has our back. He is there going through it with us.
No this life isn’t fair! My question now to God is why did my 90 yr old FIL live through Stage III bladder cancer surgery, yet my elderly neighbor’s only living son died of spinal cancer leaving her alone in this world except for a granddaughter?
Blessings 🙂
Marlo Schalesky says
Thank you. What a difficult thing for your neighbor! May God provide comfort and strength.
Connie says
Powerful. Thank you. We needed this. Will share. Jayden be healed in Jesus Name.
Marlo Schalesky says
Thank you, Connie!
Mardi Benson says
Love this, thank you!
Marlo Schalesky says
Thanks, Mardi!
Ashley says
I think your pain is unique. Yes, it is true that none of us get through life unscathed, but I cannot imagine the exhaustion and ongoing grief you live in every day.
Your words have a lot of weight because they come from that place of perseverance through suffering. And I’m sure you have lots of moments of “God, why don’t you just heal him?” And, you keep knocking on His door because you know you have nowhere else to go.
I just read about Bartimaeus this past week in Sheila Walsh’s book “In the Middle of the Mess.” I recommend the book, as she is another woman who has walked through darkness and is honest about her journey.
Thank you. Grace and Peace to you and your family.
Marlo Schalesky says
Thanks, Ashley. Bartimaeus is so inspiring to me! He’s the subject of the second-to-last chapter of my latest book, Reaching for Wonder, Encountering Christ When Life Hurts, because there’s just something about his determination to see that helps me get my mind right in Christ when things look grim. Thanks for sharing about Sheila Walsh’s book too!
Ashley says
Thanks, Marlo. I look forward to checking out your book. I think the tone of my first reply seems a lot less soft than how my heart felt.
Please know your story and words really touched me today.
Marlo Schalesky says
Thanks, Ashley! I did not take your first response as harsh at all. 🙂
Cynthia says
Marlo, I am astounded at the path you are walking as it mirrors mine from a dozen years ago. My son, Braden, (can you believe our kids names even rhyme?!?) was diagnosed with Type I diabetes at six years old as well. At age eight, we had a very difficult year…thirteen months of checking his BS 4-5 times a night. Thirteen months straight with little sleep and so. much. stress. Will he wake up this morning? Will he be able to hold that glass of orange juice? Will he remember our names as he awakes like the one time he couldn’t when his number was too low ? I can poignantly recall all of this and the nervous breakdown that ensued for me. But…
The most amazing thing happened in that breakdown. I found Jesus in a way that my traditional church upbringing never allowed. I had to lean so heavily into Him because I was too weak to stand on my own. And it ended up being one of the best things that ever happened to me. We encountered angels and Jesus with skin on all along this path…more than we could have hoped or dreamed. What an eventual blessing.
My prayer for you today is for more sleep. More self-care (I wish I had listened when people told me I needed to take a bit of time for myself). Great blood sugar numbers. And peace – like a balm – to spread itself over your spirit. It’s hard to imagine when you’re in the thick of it, but it will get better. Braden is 18 and just graduated HS…is in college…has a job…and totally takes care of his own medical needs. I’ll be praying big prayers for you that Jayden will be healthy and strong. Sending much love!
Marlo Schalesky says
Amen and amen! So great to hear about Braden. And what a blessing to hear from another T1D mom. Hugs!!
Ada Joe says
Thanks for sharing this Marlo..
You and Jayden are in my prayers…
I pray that the Lord will heal him…
I pray that Jehovah will give you peace that passeth all understanding, grace, and strength for the journey of life…
Sending you love ❤️ and hugs
God bless you…xxx
Ada
Marlo Schalesky says
Thank you, Ada!
Debbie Lewis says
The right prayer is wonderful, the right answer is always God’s plan. So although we many times pray for the wrong thing and wait for OUR answer, there is always a right answer. Thanks for sharing, it is inspirational and very deep to know that you suffer through the same child that brings you such joy. I too pray that your answer is forthcoming and that is involves a healing like no other has ever seen. Our Father is in the business of showing up and showing out, for His glory to shine for all who “see”.
Marlo Schalesky says
Amen! Thank you.
Becky Lowmaster says
Woe…what a challenge for you and your son. Prayers for him. Life’s not every easy. But God is there beside you both. His mercies are new every morning. Great is your faithfulness Lord unto me.
Marlo Schalesky says
Thanks, Becky!