It was another sleep-deprived, fall night in our small condo home, a tiny space in large, vast Orange County, California. These sleepless nights had become quite common. I was clutching Titus, my five-year-old son, close to my chest, gathering his long legs into my petite lap. At just five years of age, he was nearly as tall as me. The tile floor was cold, the room dimly lit by a lamp. My younger son slept peacefully in the room across the hall while my husband attempted to get a few hours of sleep next door in our room in order to function at work in the morning.
I had been up more nights with Titus than I could count. The doctor had urged me to get a night nurse, but something in my heart hurt when I thought of a stranger caring for my son’s needs in the dark of the night. On this particular night, my son was in great distress. His cry shifted between a soft, mournful wail to a shrill of pain, and then back to mournful cry. I could not calm him down. You see, my son was fighting a vicious disease. It had come out of nowhere, suddenly stripping him of his ability to speak, to walk, to move any part of his body on his own. He had completely lost his vision and now required a feeding tube to administer medicine and nutrition because he could no longer swallow on his own. Seizures and crying spells were common occurrences in our home.
These changes hit us like a tsunami just before he turned five. I watched my strong boy lose abilities and skills in a matter of weeks. A disease that was genetic, yet completely unknown to us, had been living invisibly in my son’s body. Until, the damage that had been building up silently came out of him in a fierce roar, stealing him away.
First to come were seizures, many days over a hundred. Then he started tripping and falling far more often than his peers. We watched his speech decline, from saying things with ease to stuttering and forgetting words. He struggled to see and had to hold books close to his face and stand near the TV. Then came muscle weakness. My son began to lose his balance, crumbling to the floor because his legs wouldn’t hold him up. If that wasn’t enough, he started choking on his food. I remember my husband frantically shoving his hand down my son’s throat one day, pulling out a chunk that had gotten stuck but wasn’t coming back up. Titus, fearful of choking, would refuse to eat and drink after that. In one month, he lost six pounds forcing us to use a feeding tube in hopes of rebuilding his strength.
Life was lived in desperation as we fought for control over whatever was happening to Titus. We were so scared. Our search exhausted test after test, carrying us through an entire year of searching and unknowns. On the day the doctors finally had answers, we received a fatal diagnosis and learned we had nothing with which to fight back. Neither did the medical world.
Our home, once filled with a dinosaur-stomping, train-obsessed, people-loving little boy, playing imaginatively with his younger brother, was now so different—filled instead with a wheelchair, a hospital bed, the hum of oxygen tanks and suction machines, and a schedule run by syringes and medications. It was a whiplash that hit me in the gut, leaving me breathless at the rapid change. I couldn’t blink or I missed another ‘last’ as my son lost skill after skill after skill. And then we were delivered more bad news. Our younger son, Ely, also had this genetic disease silently damaging his body, and we were in for a sequel against this monster called Batten.
As my son cried out in pain and mourning, I tried everything—medication, singing, rocking, distracting. But on this particular night, nothing worked to ease this bout of suffering. I suddenly became so angry. As I held Titus, I could feel my body shaking. I was tense everywhere, unable to even catch a breath. I was so furious at this disease for what it was doing to us, to my boys. In those moments, my mama heart could no longer see Titus. Instead, I was blinded by an all-consuming hatred in my heart for this disease.
As I started to rock a little harder and my body shook, I realized I had to set Titus down and walk away. My anger was too present and I was so tired I couldn’t think rationally anymore. I walked away and heard him cry, knowing I couldn’t care for him the way he needed me to. My soul screamed out to God full of guilt and shame, but also blame. Someone needed to pay for this because it wasn’t fair.
My rage wasn’t pretty. Is it ever? I cursed out in anger and flipped God off as I screamed at Him, “What is happening? And where are You?!” In that moment, I didn’t see beauty in ugly places. I didn’t feel redemption in our pain. Joy was the furthest thing from my mind. I didn’t know who to trust or where to go for help. I was utterly broken.
As Christians, we like to reference Romans 8:28, “God will work all things for good.”
We remind, “God has a plan for everything.”
While true, these niceties I grew up hearing in the religious community, the ones we tend to say to make us feel better, were simply not enough. In these moments I could not reconcile a good God with One who would just pat my head and say, “It’s okay daughter, I have a plan for these circumstances.”
As I raged at Him, an image flooded my mind. Everything else around me went quiet and dark and I was pulled to the floor in emotional collapse. I curled up in a ball with tears spilling from my eyes. The image that had taken me over was a picture of a man hanging on a cross. His head was drooped, the air gone from his lungs. His skin was gaping open and ripped apart from being beaten. Actual nails were driven through his limbs. And there was so much blood. I felt myself nod at this image as my heart fell into the brokenness where I was drowning. I whispered out loud, “Yes, exactly. That kind of brokenness.” My voice broke.
I was in this emotional free-fall waiting to hit the bottom and when I arrived, there was this man on a cross. I thought I’d be alone down there, but I wasn’t. He was there. He came even to rock bottom. There was no patting my head in a condescending way, no reasoning away my pain or telling me to get over it or to rise above. No, rather, I began to see Jesus from an angle I had never understood before. In that moment, I realized He was utterly crushed and beaten and given-in to complete brokenness, death—exactly what my child was facing. He endured it so that in our brokenness HE could be enough. He could say, “Me too.”
Talk about an “I’ve lived through it” kind of empathy. Nothing changed in my circumstances, but suddenly I felt so much Love. And yes, I mean capital L—Love. This wasn’t a trump card God was trying to play on me to ‘one-up‘ my story. He wasn’t playing the comparison game. He was validating Love by being willing to fully feel and experience the brokenness that we were, and are, guaranteed to experience in this life.
I gathered myself back up, knowing the pieces I picked up wouldn’t go back together right away. In fact, they would never go back together the same way again. But I wasn’t holding them in my small hands anymore. As I picked them up, I surrendered each and every one of them to Him. He was holding them for me with this tender care that said, ‘No matter how heavy these things are, I will journey this with you. I will hold all of this and I will never leave.’
In broken and safe surrender, I walked back into my son’s room where his cries still echoed off the walls. The small lamp was still on in the corner and I could see shadows dancing across the walls. Because my Jesus had just gone to complete brokenness with me, I climbed into that hospital bed next to my son, held him, and was able to join him in his brokenness. We both calmed in the presence of the one who I called “Great Love” in that moment. My eyes were opened and I saw my son, not the disease. The disease had lost its victory in my soul-surrender to Jesus, who knew exactly what I felt. My mama heart was filled with love for Titus, no longer taken over by hate of our circumstances. In that broken place was joyful victory. And death, while still shadowing us in this world, had just been defeated.
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I’m almost speechless. I read this first thing in the morning and it brought me to tears. This does not happen often. The writing is simply beautiful, but the way you’ve shared this story in such a real way while highlighting the Truth melts my heart. THANK YOU for your willingness to use your pain to point others to Jesus.
Tears are running down my face now. They started while reading your beautiful piece and are now flowing freely. Thank you for being so vulnerable in sharing the hard parts of your story – the day to day gut-wrenching pain of a mother helpless to relieve her child (and in your case children’s) suffering. Only our Jesus’s willing sacrifice on the cross could ever reconcile our good God and such pain and suffering in our sin-sick world. Your words, “He is validating Love by being willing to fully feel and experience the brokenness that we were, and are, guaranteed to experience in this life.” so poignantly makes that connection.
I pray this new treatment greatly helps your younger son, and I’m so very sorry for the loss you and your husband suffered in your oldest leaving this earth so soon.
Beka, my heart is broken as you describe how you, yourself, have been first broken and then broken open. What a powerful testimony. Love and prayers for you and your beautiful family from a fellow Hope*Writer..
Bekah, these words are beautiful. Such gospel hope in our suffering. Thank you for sharing.