Refining Stories: Allison, A Special Needs Mom

Refining Stories

As part of my Refining Series, I’ll be sharing Refining Stories; stories of people who have wrestled with anger and disappointment with God.  People changed, rebuilt and rescued by God. Allison, is a special needs mom. I pray by reading her story you’ll be strengthened to continue your own refining season, with the confidence of how God works all the hard things together for good. I’m honored to have Allison share her story.

Allison’s Story

Sitting at the kitchen table, scrolling through Pinterest, I heard my husband Ben answer his phone. We’d been waiting on this call for a couple of weeks and my heart constricted tighter and faster listening to his end of the conversation. Though he was mostly nodding and scribbling notes, not saying much, I could tell the results showed something.

Hanging up the phone, he turned to tell me the results: a rare (1 in 100,000 boys) genetic disorder. Three extra chromosomes. A spectrum of possibilities but physical and intellectual difficulties guaranteed. Apraxia. Hypotonia. Possible heart issues. Anxiety. Recurring pneumonia. Of course, our pediatrician advised us not to Google the syndrome, and of course, I didn’t listen.

I was a first-time mom, and suddenly now, a special needs mom. Driven by fear and needing some pseudo-control as my world spiraled out of control, I Googled our son’s disorder. I was desperate to find anything and everything I could to help me make sense of this new, strange reality I found myself in.

Beneath the fear, though, was a profound disappointment and anger towards God. Why did he allow this to happen to our son, our first child? In a world that all on its own is difficult, why add so much more to a tiny boy’s plate? Why did so many other people not have to walk this path? Why us? Why him? Even though God had blessed me in so many other ways throughout my life, to my broken heart, this shattering news stood out as a glaring breach of trust.

Feeling cursed instead of blessed, I grew numb and distant in my faith. Without a firm foundation of trust in God, I turned inward, to myself, to figure everything out. In God’s loving kindness, he allowed me to go my own, broken way. Every direction my disjointed dreams littered the path. A normal, healthy, typically developing son? No. My son being playmate to my friends’ babies born around the same time? Impossible. More babies for us? Uncertain, because how could I dare risk this happening again? One day enjoying the empty nest, golden years with my husband? No guarantee.

Life seemed to spiral with greater intensity and speed. So, I hunkered down and plowed through months of doctor, specialist, and therapy appointments with our son Reed. As I forced myself to grit and bear our new special status, I forgot (or maybe ignored?) Jesus’ call to come to him for rest. I ignored my emotions and just kept moving. Each time the emotions resurfaced, I muscled them back down under the surface.

I started blogging when the emotional waves threatened to undo me. Processing our special needs journey through writing became a cathartic release for me. And ultimately, God even used it as a way to heal my disappointment and anger. I wrote to make sense of our new life, and as I wrote, God began to bring familiar Scripture to mind. Come to me all who are weary and I will give you rest. I knit you together in your mother’s womb. These momentary afflictions are producing for you an eternal weight of glory. He will wipe away every tear. These trials have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit. Jesus has come that we may have life and have it abundantly.

As I continued to write through the pain, different verses poured like fresh water over my soul, and God reminded me that His heart is always set on redemption. Redemption for our souls, our lives, our hearts, and even our circumstances. The grief of losing one dream and living an entirely different reality was not lost on God. In our grief, he comforted us. In our weariness, he restored us. In our despondency, he rebirthed hope. This did not happen all at once; instead, at just the right time, God would remind us, through the grace of His word, our community of friends and family, and prayer, that we were not alone. In the wild beauty of this unexpected path, we were resurrected by the infinite possibilities of His grace.

Lessons Learned from Refining

Our son will turn 9 years old next month, and in those early days it was almost impossible to see more than five minutes past the next medical appointment. But now, with almost a decade living as a special-needs family, I can more readily see how God has shaped us through this special journey. You see, God has no interest in guaranteeing an easy, “normal” life for me. He is, though, steadfastly working to create for me a grace-filled life. By the refining work of the Holy Spirit, I am being molded to be more gentle, kind, affectionate, compassionate, sympathetic, warm, giving, and vulnerable – because of our son. Each time a bit of harshness or anger or defensiveness is chipped away, I can see the redemptive hand of God at work even in the story I never would have written for us. I am learning to trust that He has a greater kingdom purpose in mind than we might even imagine.

These days sitting at my kitchen table, my heart beats faster and my soul finds satisfaction knowing that because of Reed and the exact way God wove him together, we’ve experienced greater grace than I could ever hoped for, and for that, I am eternally grateful.

Still struggling with your refining season?

Maybe this will help?

I’ve included a guide to help you navigate your refining season. Click on the image below and leave your name and email so I know where to send it. After you leave your name and email, go to you inbox to confirm your subscription and you’ll find the free printable resource at the bottom of a welcome email. Just click on “free gift”!

10 Steps to Surviving a Refining Season

 Digital design by Patricia Tiffany Morris at www.patriciatiffanymorris.com

ALLISON BYXBE is a writer, blogger, and occasional college professor. She lives with her husband, three kiddos, and two dogs in South Carolina. When she’s not writing or teaching others to write, she enjoys hiking, making beeswax wraps, learning about natural health, taking road trips, and drinking the perfect latte. Allison loves to connect with others about writing, family, special needs parenting, mental health, grief, and faith. Her writing has been featured on The Glorious Table, The Mighty, and Her View from Home. You can find more of it on her blog Writing Is Cheaper Than Therapy.