By Sara R. Ward
God's Brave Women - Sara's Story
This wasn’t supposed to be my story.
Have you ever said those words to yourself? Have you looked over your life and thought to yourself: This can’t be happening to me?
In 2012, my son died from a terminal genetic disease. We adopted him at birth, a newborn bundle of joy with hazel eyes and curly hair who was broken at the mitochondrial DNA level.
We discovered something was wrong when he was nine months old at a wellness check. The doctor noted that he was developing behind other babies his age and recommended an MRI. As soon as she said those words, I knew there was a problem and I began to cry. How could the son we waited so long for be sick?
"The doctor noted that he was developing behind other babies his age and recommended an MRI. As soon as she said those words, I knew there was a problem and I began to cry. How could the son we waited so long for be sick? "
When we brought him to the MRI appointment, they slid his tiny body into a machine where his brain was imaged and spliced onto a computer, looking more like a foreign map than the mind of a little boy with a contagious smile.
Soon after, the doctor read us the devastating news from the MRI report. “It’s consistent with Leigh’s disease,” she said over the phone.
“What’s that?” I asked.
“I don’t know,” the doctor said, “but I’m sending you to get a second opinion from a pediatric neurologist.”
I hung up the phone, fear gripping my stomach. The doctor had never heard of this disease and was on vacation when she called. She wouldn’t be back in the office for another week and the appointment at the pediatric neurologist’s office was likely to take weeks.
I had to know how this diagnosis would affect my son. I sat down and googled the words, Leigh’s Disease. Although the syndrome was rare, I stumbled onto an article that gave me the devastating news: My son’s life expectancy was only two to three years.
No, please, no, this isn’t my life. How could this be happening to my son?
We stumbled through the next few months as Silas started having seizures and his health tumbled in a downward spiral. He lost his ability to talk, sit up, and play with toys and we found our weeks consumed by doctor appointments, therapy visits, and hospital stays.
But in those moments of caring for him, I still saw the image of God in his peaceful spirit. I felt joy bubbling up in his laughter. As I held him in the long night, comforting him after a seizure, I experienced the love of a God who held us in the dark.
Even though I didn’t want this to be our story, I knew I could either trust in God’s sovereign plan or spend all my energy fighting what I could not change.
I didn’t have to be brave. I only had to lean on the one who could be brave for me.
"Even though I didn’t want this to be our story, I knew I could either trust in God’s sovereign plan or spend all my energy fighting what I could not change. I didn’t have to be brave. I only had to lean on the one who could be brave for me."
My God, who invites me to rest in the shadow of his wings.
My God, who is a strong tower of safety in the dark.
My God, who never fails, even when I feel like a failure.
Through my son’s disease, I learned being brave doesn’t mean that we have all the answers or don’t deal with fear.
It means leaning on Jesus because our own strength has failed us.
When all hope is lost, we walk in the darkness toward rising hope. We hold on to the redemptive story God is writing for us.
We let his story become our own.
Brave Woman Manifesto
Make sure to check back next week as another courageous Sister shares her story!
And by the way...
You are Brave!
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About Sara
Sara R. Ward is the author of the book Made for Hope: Discovering Unexpected Gifts in Brokenness, which tells the story of her son and shows readers what God has to offer in the midst of our brokenness as we grasp to make it through a difficult season.
She has been published on the Today Show Parenting Team, Focus on the Family, Adoption.com, and (in)courage. Sara also speaks to women’s groups about cultivating joy and faith and is the host of the Made for Hope Podcast. She is a wife and mom to three adopted children and resides in Fort Wayne, Indiana. You can find her online at sararward.com where you can find out Sara's new Bible study and get free Bible study resources. Follow and connect with Sara on Facebook and Instagram.