It wasn’t the crash that alerted me to trouble. Steve and I raised five boys. The absence of crashes is more concerning. However, Colton’s plaintive wail of “Mom!” was new, distinctive, and wholly terrifying. It set roaring waves of fear crashing over me. I don’t know what I expected when I raced into the room. But if I had a Bingo card, Colton, ashen-faced, holding a wildly convulsing DJ, wasn’t on it.
The sight left me feeling like I was trying to draw air from a vat of crude oil. My oldest and youngest sons were in great need, albeit for different reasons. Colton is on the high end of the autism spectrum. DJ has nonverbal mitochondrial disease. Together, they are a beautiful tapestry of positivity, light, and love in the darkest of life’s caverns. But on this day, all of that would be challenged.
“Give him to me.” Colton obeyed. His expression asking questions he couldn’t voice. Fear rose up like a being in that room. Only the whites of DJ’s eyes shone as he continued to convulse. I laid him on the floor. Foam gathered at the corners of his mouth. Leaning over him, I whispered, “It’s okay, DJ. Mommy’s here.”
Amid sternum rubs and rescue breaths, I felt Colton’s gaze zero in on us. Colton’s precious, tender heart, the very essence of him, was splintering in irreparable ways. Regardless of the outcome, this moment marked Colton forever. He needed something to do besides bear witness to what may be the end of his brother’s life. “Get your Dad!” Colton didn’t need to be told twice. He seemed to teleport from the room.
Steve tore up the stairs to a rapidly deteriorating situation. “Call 911!” I screamed. I saw in Steve’s eyes the abject horror quaking within me. He, too, recognized the importance of protecting Colton from the unfolding trauma. He dialed 911 and sent Colton to the porch to wait for and direct EMS.
My mouth whispered words of love and comfort to DJ while my heart begged God for the same. My world went still. Everything centered on DJ. Was my baby actually going to die on the bathroom floor of our new home? Of all DJ’s past medical issues, this was the worst by far. I didn’t need medical equipment to tell me his heart rate, oxygen, and blood pressure were at dangerous levels. I felt it. Coldness seeped deeper within. I shivered.
The transfer of care from EMS to Clark Regional was a beautiful dance of activity and information gathering. It was next-level professionalism. It gave me my first nugget of hope. If DJ could be saved, these people would save him.
We’ve endured death sentences pronounced over DJ literally from birth. This was different. Every cell of my mother’s intuition screamed danger. Death was knocking at the door. And this time, he may barge in. The knowledge made me physically ill. Dizziness swallowed my head. Nausea roiled within. In a hospital corridor, I fell against the wall and slid to the floor. “God, please don’t take my son. I know you gave your Son to die for me, but I can’t give you mine. Please don’t make me.”
For days, we prayed as DJ rode the pendulum of a death swing. Steve and I slept in chairs alongside DJ’s ICU bed. A team of incredible medical professionals mobilized, ready to fight for DJ. Their steadfast commitment buoyed our spirits. We beseeched friends and family to pray. And we waited.
Eventually, God answered our prayers. DJ came home, but was far from out of the woods. He had a PICC (basically a deep IV) used to administer medication. The line required constant maintenance to prevent further infection.
Those first few weeks home were the most stressful of my life. We lived in the threatening shadow of another seizure. And the next one could be fatal. My nerves thrummed with sleep deprivation and unmanaged trauma. This horror was the result of everything that happened before and the backdrop for what happened next.
