I sat upright in bed, springing forward with fearful power, my body drenched in sweat, and in my semi-conscious and confused state I had to take a moment to decipher what was in fact reality and what wasn’t.
Reality: My husband and both boys are tucked safely in their beds.
Reality: All is well. Time to go back to sleep.
I had, yet again, a nightmare about losing track of my boys when they were around a large body of water. And my nightmare always ended with me desperately trying to save one or both of my boys as they succumbed to the deep waters they had shown no fear to and it swallowed them whole.
And I repeated the nightmare. Night after night after night. We had just moved to California. Living near pools and the beach were a new thing to me. Playing in the water with my two young boys was a new thing to me.
Truth was, in the day, our playtime in the water was some of the best family fun! But there was always a fear eating away at me. Don’t let go! Don’t take your eyes off them. They could die under your watch and you are here to protect them!
The nightmares slowed down as winter came, the air cooled just enough to make trips to the water not as appetizing and we moved on to other activities. But for months that nightmare haunted my sleep, taunting me that I couldn’t protect my kids enough, that no matter how alert to them I would be in my dream it was strangled out by a nightmare as my sons were drawn to dangerous waters and swallowed up again. Over and over.
Danny noticed. I was restless and tired during the day. I continually asked myself, why this intense fear of losing my boys and not being able to protect them? Even with my eyes full on them. In these nightmares, my voice never worked, my legs always moved too slow. I couldn’t save them. All was out of my grasp, my control. And it devastated me night after night, week after week.
Fast forward a few months to April 7, the day were were hit with a new reality. Our son had a disease that we couldn’t control and it would take his life somewhere between 6 and 12 years of age.
Fast forward another few months to June 25. Our youngest was delivered the exact same diagnosis.
Reality: My boys both have a genetic neuro-degenerative disease that cannot be cured or, at this point, stopped.
Reality: I cannot save my boys and they are dying.
Nightmare brought to life. Fear that disables. Depression that overcomes. Security uncovered as an illusion.
This disease has ravaged through Titus’s body. Quicker than we could’ve seen it coming. How did I miss it… the last time I’d hear him roar or see him tackle his brother? How do I live courageously, still the mama, the protector? But with no control?
Fear seizes. Fear cripples. Fear blinds. I can’t be here. Fear kills.
It kills beautiful moments. It kills the ability to see those moments in harsh reality. It kills moments of closeness in relationships. I can’t be here, fear. Take my place setting away. I’m leaving.
I can’t sit in a complacent tolerance of auto piloting to fear.Yes, it’s the easy response. But it’s the cowardly response. And it’s not of God. I heard a new-to-me song a few months ago. On a day when the symptoms of the disease were coming out strong in Titus. A result of the degeneration happening as a result of bad genes that we can’t fix. Here’s the words to the chorus:
When you don’t move the mountains I’m needing you to move
When you don’t part the waters I wish I could walk through
When you don’t give the answers as I cry out to you
I will trust, I will trust, I will trust in You!
-Lauren Daigle
Today I will protect my boys by knowing full well who my strength lies in… who my trust lies in. And I will not return to fear today. I will look to Him, the one who knows exactly where this is all headed and promises goodness. And I will walk this path with Him no matter how brutal this world feels. Because today love and joy get to win. And we find beauty, not fear, in Him.


Thanks for listening…
Bekah
Hi Bekah,
I just came across an article on Gordon Gray’s daughters who got diagnosed with Batten in March, 2015- https://curebatten.org. Just wanted to share in case this is helpful.
Take care,
Blue
Hi Bekah, I wanted to let you and Coach Bowman know that my husband and I are praying for you today. O’Malley, our daughter and one of Coach Bowman’s hurdlers at Olivet, shared his text with us about your day today. Your blog is an inspiration to me and your strength is like no other. Thank you for being so real. It breaks my heart.
Thank you so much Shelly! So thankful for our army of prayer warriors!
Thank you so much for sharing! I truly needed to read this tonight and I want you to know that God speaks through you to so many people and to me 🙂 thank you for being so transparent and letting God use you and for being such an inspiration to all of us!!
Thank you Shelly! I know you know first hand what I’m sharing as you’ve been through it with Josh. So thankful God can use us and our story to speak into you and others hearts!
Hi Bekah
Last night my friends nineteen year old son was killed in a car accident. All day I’ve felt the enemy on the fringes, trying to stir up fear of losing loved ones. I think when you hear of loss of a loved one and people ask Were they a Believer? It’s because they want to know that those who are still here have Hope of eternal life together , that this life is not The one we hope for.
It makes me aware of how important it is to share the Gospel. It is easier to trust in our good God when life is good, but I know that in your grief people will follow and see your Savior. The one you trust with your two sweet boys.
Prayers for you and your family. Come Lord Jesus
Sue, I’m so sorry to hear of your friend’s son. Yes, so important to know His saving grace and incredible love for us. And also to know that He walks through the darkest times and gives us reasons to smile and celebrate in the midst. That doesn’t make sense to the world, but it’s available to everyone… that kind of peace. Thank you so much for sharing and for praying!
Another beautifully written post Bekah…one day it will be a book…compiled as a ministry to all those “out there” who have no where else to turn but to one mama who has been there. I love you 🙂
You are so kind… thank you for these affirming words, Debbie. Love you!