Refining Series: A Mother's Grief

We are wrapping up our Refining Series today with a powerful story about grief. I met Bekah in an online writing group called Hope*writers and was part of the launch team for her newly published book, Can’t Steal My Joy: The Journey To A Different Kind of Brave. Bekah shares the story of her two sons’ diagnosis with an incurable genetic disorder. In a matter of months, she lost her firstborn, Titus and now battles the disease with her son, Ely. Her book is the most honest portrayal of pain juxtaposed with the hope of Christ. I read her book in one sitting and came away inspired and challenged by her courage through a devastating loss. It’s an honor to share Bekah’s story.

Bekah’s Story

I grew up in the southeastern desert of Idaho at the base of a beautiful mountainscape. And I loved the mountains, but some of my favorite memories growing up came from our vacations to the central coast of California where my grandparents lived. When we visited, we knew we were always in for a fish fry, a Santa Maria BBQ, and trips to the beach.

And oh, how I loved the trips to the beach! We would catch sand crabs and put them in a bucket, watching them burrow back down to safety. I loved walking along watching for the little bubbles that would tell you to start digging because a crab was sure to be under there. I also loved building things out of the sand. Sandcastles, covering ourselves in the sand, making animals. It was all fun. And then we’d watch as the tide would swish in, slowly and surely taking apart whatever we built. I had no idea as a kid, I would one day feel like my life was one such sandcastle getting tormented and destroyed by waves with no control over the matter.

The first wave that crashed into us was the day I got a call that my son had a seizure at preschool and had been rushed to the hospital. The second wave was the diagnosis that our youngest was failure to thrive and needed major stomach surgery and a feeding tube placed. The tide continued to come in and thrash against our sandcastle, this life we had built, as my oldest continued to struggle with seizures and more scary health issues. Blindness, muscle weakness, difficulty swallowing, losing skills like speech, walking, and being potty trained. And we were as helpless as a sandcastle on the beach against the tide coming in.

We were desperate for answers. We had nothing to call these terrible waves that were sweeping in and stealing from us before they rushed back out into the dark night.  We were defenseless and scared and grasped for some way to control, to fight back, to dig trenches to protect our precious sandcastle.

The line is drawn between what is and what is no longer

Our new year usually began fresh on January 1 like most others in our culture, but in the year 2015, for our family, our year was severely split between what had been and what now was on April 7. A day we will never forget. Our doctor looked us in the eyes with empathy and sadness and delivered a diagnosis that held a death sentence for our son. A rare, genetic disease. And then another day that distinctly marked a before and after—just a short two months later, June 25. The geneticist called to give us test results for our youngest son. He too had this rare, genetic disease and even though we didn’t see symptoms yet, they were coming. More waves set out on a direct course to destroy our sandcastle.

The disease tore through Titus’s body taking everything away from him. As my son grew older, his needs increased and his ability to do anything for himself at all was lost. Just a year and a half after hearing his diagnosis for the first time, we found ourselves home holding vigil by his bedside, knowing that at any point our son was going to run to Jesus. A final wave crashed over our sandcastle at 10:52 pm on September 17, 2016, as Titus breathed his last breath here on earth and ran to Jesus.

The next morning when I pulled myself out of bed, I stood in the kitchen lost. I didn’t even know who I was anymore. The sandcastle we had been building—our life and my identity—had just been destroyed. Nothing was the same now. We were in ruins. As we began the slow process of rebuilding, our sandcastle took on a different feel. Because now it held a guest—grief.

This temporary life and our broken King

The thing with sandcastles is that they are temporary. Some we build are simple, some elaborate and detailed. Some we don’t spend much time on and some we spend most of our lives building. We can choose to build them for the glory of God or for the glory of ourselves. When the roaring waves come crashing up and over them, we may cheer for some to be taken down as we seek a new adventure, others we fight to salvage, digging trenches to keep the water at bay, and some we grieve at the unstoppable loss as our sandcastles get swallowed up in the big wide blue.

And that’s where our family found ourselves—washed up in grief-filled ruins on the beach. In my deep mourning, I cried out to the God I had always understood to be good and redemptive. This life didn’t feel good or redemptive.

In His faithfulness, God met me in my broken place and showed me a broken Lord. My Lord who had taken up a sandcastle—a temporary human body—to demonstrate love to us. To go all the way to death to defeat that which seeks to destroy us forever. My Lord who reminded me, that I am not my sandcastle. And neither are my boys. What God was gently revealing to me in the middle of our totaled loss was that when our sandcastles get destroyed, the very deepest part of us—our souls—do not. Because Jesus claimed victory over death, our souls are complete in Him even while we live broken. This is the truth that must sink down into our bones. As we walk through fire, storms, dark valleys and are hit by relentless waves–He is right there inside, beside, in front, behind, and all around reminding us of who we already are and what we can already claim victory over.

Refining waves over our sandcastles

And so, I stand on the shore with my arms praised to the One who reigns, even over the waves. And as the waves come in and wash over, I feel the gifts He has sent within the waters. Grace. Hope. Joy. Perseverance. Love. Redemption. And I remember that I am already made complete. And because I am already complete, I can enter each day, knowing He is in me and I, in Him. The joyful manifestation of this realization is that we get to build these sandcastles of life together.

So, I am free to enter back into this world, holding grief and whatever else feels heavy and ugly knowing that it isn’t me and it isn’t mine to hold alone. It’s a sandcastle. And in the building of it, I see the beauty I might’ve called ugly before. I see how these waves roaring in, woo me and teach me and bring me back round to who I really am.

His. Loved. Redeemed. Victorious. Enough. Period.

Are you still struggling?

Maybe this will help.

I’ve included a free guide to help you walk through your own refining season. Just click on the image below and leave your name and email so I know where to send it.

Next week we’ll begin our new series on the blog. We be talking for the next eight weeks about how to build a closer with God. Don’t worry, I’m not going to guilt you into more things to do or meaningless religious activity. It’s a matter of focusing on a few things so you can be more aware of God’s Presence each day.

Bekah is a coach’s wife and mom to two boys, Titus, who is with Jesus and Ely who is nearly 6. She loves to write and share words of hope that point other wounded souls to a good, redemptive and loving God. Her book Can’t Steal My Joy:The Journey to A Different Kind of Brave is out on Amazon! She was a Children’s Pastor for several years until Batten disease came knocking on their doorstep. She now has a passion to help bridge the large gap between churches and families with disabilities and is cooking up some new dreams to accomplish this to help create a place of belonging for everyone inside the church.

Find her on Facebook at https://www.facebook.com/Team4Titus/Ely

website: https://www.cantstealmyjoy.com