The shrill scream jerked me from my sleep.
Not again, I thought. Groggy and disoriented, adrenaline took over. I leapt from the bed and jolted across the hall to my son and daughter’s room, my husband close behind. In the soft glow of the night light, my son writhed with fear, his eyes wide and glazed over as though he was still partially asleep. I leaned over and hugged his stiff body calling, “Josiah! Josiah! It’s okay. We’re here. You’re safe.”
His scream shifted to a cry as his eyes filled to the brim with hot tears. My heart ached as I watched those baby blues give way, as tears started to drip on his flushed, sweaty cheek. Another scream pierced the air. I muttered prayers and whispered peace as I stroked his arm and tried to calm him, but nothing seemed to work.
After the kind of seconds that feel like hours, he croaked, “Get them off! Get the tears off!” We frantically grabbed tissue and a soft towel to help him dry the tears. We couldn’t keep up with the tears that were still pouring out. The toddler-sized race car bed creaked under our weight as we piled all our frail efforts together to try to get his “feet back on the ground.” He wailed in pain. Tears aren’t supposed to hurt, I thought. What’s going on?
After a while in this timeless space, his tears slowed and the dampness on his face started to dry. His small frame started to relax. His eyes finally started to focus. “We’re here, sweetheart. It’s okay. Peace, in Jesus name.” He was exhausted, but I couldn’t let him go just yet. I tried to restrain my voice as I sobbed in the stillness and rocked him back to sleep.
I have tasted more deeply of life, of color, of texture and beauty than I ever knew possible in the lives of my three kids. All three are full in their personhood and immense in the joy they bring to our lives. Josiah, my middle child, was 3 ½ years old. He’s always been a sweetheart. As he grew, he came alive with energy, adventure, and volume in all its forms. I can’t tell you exactly when it started. Three-year olds are not easy, but in the fall of 2015, my husband and I became increasingly bewildered by our interactions with him.
To us, it didn’t seem like it had any rhyme or reason. Josiah would complain about his clothes, socks and shoes incessantly. Transition of any kind – whether switching activities or entering a store – was a huge undertaking. His pickiness about food had always been an uphill battle, but even this intensified as we struggled to make sure he was getting enough calories.
My youngest, Trinity, was an infant at the time and we could not successfully teach him how to safely interact with her. He never expressed anything but deep affection for her, but he would push on her, lay on her, or pull on her in strange ways. No amount of training or correction yielded a difference and he seemed oblivious every single time it was addressed. We could not leave the kids alone for even a minute.
Josiah yelled much of the time and seemed to have no volume control, yet every day noises bothered him to the point of screaming in pain. I’ll never forget the time someone left a noisemaker humming upstairs from the night before. He heard it, grabbed his ears and started sobbing that it was too loud. Scenarios like this made me wonder.
As the fall went on, his reactions grew more extreme and harder for him to recover from. I lost my patience daily and in my desperation yelled – even screamed – at him countless times. The things I said were not born of hate, but I could see the hurt and fear in his eyes. My tearful apologies became the norm. I would understand later that my reactions worsened his symptoms. I was trying to understand how to help him, but none of this made sense.
When Josiah would cry, he would completely forget what he was crying about, because he would start screaming as though hot acid was dripping down his tender face. He trembled from the pain of his tears. Sometimes all I could do is just cry with him while trying to soak up his tears with bits of toilet paper. “This doesn’t make sense! He’s falling apart and I don’t know how to help him! God, help!”
By the end of January, Josiah and our family were in turmoil. His behavior reached an intensity that I could have never imagined. I knew my son. This gift of God. His name means “Jehovah heals” and his middle name means “warrior.” I believe that he is meant to be free, thriving inside and out. Slowly, we started to understand that our son was climbing a mountain we couldn’t see. We agreed that there was more to it than behavior and believed God for both an answer and complete healing.
Waiting for answers, bad dreams stole away Josiah’s peace at night. Mornings began with tears and meltdowns. Josiah constantly craved to be held or carried. With a 4-month-old nursing baby and a homeschooling 7-year-old, frustration escaped my lips at times, even as I tried to satisfy his needs. He was either constantly hungry or refused to eat. Just when we thought we had a grasp of the list of foods he would willingly eat, he’d refuse one of them.
Wind on his skin made him cry. Seemingly insignificant textures, seams and tags were painful. He’d scream until we cut them out. Leaving the house took 20 minutes just to put on a coat, socks and shoes and keep them on. We could not survive a church service without holding him tight and letting him watch Netflix on a device. When an unknown child approached him, he screamed out in fear that they would unexpectedly touch him.
He impulsively ran through the house and would ram into furniture. Poor balance caused him to fall and bust his lip open almost weekly. If one drip fell on his thigh during his bathroom routine, which often was the case, it felt like burning acid just like the tears on his face. Washing hands was a nightmare. It was all I could do to make it through the day. At bedtime, he couldn’t calm down. We read our Bible story and prayed over him, but he begged to stay awake for fear of his dreams. Then his bed had to be a certain way with no wrinkles in the sheets or covers. It was so annoying at times, but once we got him settled, he would breathe a deep sigh of relief, smile and say, “You’re the best. I love you.” His body would give in, and this kind of day would start again.
Come February, even though my husband and I had become increasingly compassionate and long-suffering, I lost my cool several times during that frigid week. I felt that I was failing.
Next Sunday, an answer came.
I arrived to church early and worship practice was still going on the in main sanctuary. Josiah ran to me grabbing his ears in pain from the music. An observant mom approached me. It was a bold move on her part, but one that proved to be providential in discerning that Josiah was having sensory processing challenges. With compassion in her eyes, this dear woman leaned in and said, “You are not a bad mom. You didn’t know.”
The revelation of what he was dealing with was like a strike to my gut, but those gracious words were like balm to my soul.
As we drove home from church that day, I sobbed as I read to my husband the common symptoms of Sensory Processing Disorder (SPD). Almost everything Josiah had been experiencing was described. Within a few weeks, he was seen by a professional and was formally diagnosed.
We do not always understand how the challenges of life come to us. Perhaps you are also facing a mountain you feel like you can’t climb. It’s in this space before the rest of the story unfolds that we find that God is here. When the prophet Isaiah foretold the coming Messiah, he called Him Immanuel, which means “God with us.”
The reality of that truth changes everything.
If God is with us, we can forgive ourselves for all the times we’ve faltered and failed. If God is here, we don’t have to know all the answers to know that we are being held by arms that will never let us go. In His presence, we can ungird our heavy souls and lay our hearts bare before a fully engaged, fully feeling Abba Father. Our brokenness is an invitation to divine exchange with God. He hears us when we call and collects every single tear. Best of all, He’ll never send us away empty handed.
Courage for us at first meant studying Josiah’s neurological dysfunction, and most importantly him, as we held onto the promises of God. I knew Josiah was great, and awesome, and smart, and gentle. But as I watched him, I was humbled to see a champion emerging. When he would fall apart, we would run to him first and foremost to connect and to love. As we learned and God moved, we got better at learning how to empower him and each other. I’ve seen my daughter minister grace when her own tender heart was hurting. My husband has lifted me up after long days in the trenches and has modeled the tender mercies of Christ. I have become freer from the opinions of people, learning to set my gaze on Christ alone and trust Him for the grace I need for the very next moment.
We are on a journey and it’s a sometimes-ugly process. Out of painful times, our family has gotten better at seeing the overcomer in each other. There’s more joy mingled in the tears than there used to be. We fall down. We get up. When feelings swirl, I’ve found that the Word of God is an anchor to my soul.
Maybe you’re facing something hard right now. Maybe you’ve run out of prayers, tears or even hope. It’s okay. You’re not alone. God can meet you right there in that honest place. He’s not daunted by our unravelling. He’s the answer for our aching hearts and the fulfillment of our deepest thirst. I pray that no matter what you are facing, that you will experience Christ as Immanuel, God with us. I pray that your heart would find exchange in the limitless depths of God’s love for you no matter what you or your family are facing.