The dawn falls across the skies and I fear I will not be able to close my eyes. No sleep will rest upon this home. My child awakes throughout the night. His body seizing, his lungs rattling with secretions. Coughing and seizing, the noises of a body fighting for life. His mother and I do not dream of the end of a day, for the day never seems to end. We get an hour or two, then we must wake again. As my son’s body is tired, our bodies are tired, we see no end in sight.
I watch with great horror as his eyes open, his hand begins to jitter. His eye twitches, next his lips, and last his whole body violently shakes as if an earthquake is upon him. His expression, his eyes lifted and his mouth open wide, seems as if pain is striking him. Soon his body calms and his breathing goes soft. His eyes slowly close and for a moment he rests until it runs its course again.
No remedy or cure can stop this madness. None that we can see.
We lay him in bed, surround him with melodies of music and love. Whispering often into his ear, “Daddy loves you, Jesus loves you.”
For a calm hour or a fleeting moment I close my eyes and forget the suffering and painful night. But with a loud jolt, my body jumps to the menacing beeps from his oxygen machine. His lungs hold back air, while his heart rate races, unable to maintain during the seizure. Another 12 to 15 minutes or more will my mind begin to settle into some kind of sleep, only to be struck down again. It is a continual scream in me, wanting to rest but forced to be awake.
I can only pray the good Lord will turn 2 hours into 4 and 3 hours into 6 and miraculously my body, mind, and spirit will be lifted up and restored. I will know deep rest and life again. I will see in each morning sunrise a joy to sustain me, a light to shine upon me to lift the dread of night and replace fear with faith. To rise from a grave and fly among the clouds.
Where I sit in this moment, looking at my child, his eyes open and breathing heavy, my heart hurts. I don’t look with comfort at my pillow and my bed. I say, “What is the meaning of sleep? Why even try to lay my head down?” Until my head can hold it no longer and my eyes fill with drowsiness and I fall to the end of myself. Thoughts fade into nothing, slip one by one until the space of my mind is a mist. I meet God in that place. I have seen him often this week, in a form I can know, one unlike images or descriptions colored by men. IT is like a fragrance in the air, joy expressed in a room without people, the cover of an unread book, and the soft living presence of a melody. The touch of a man’s soul where body seems to drift away. No dream or games played in the mind, it is something real. So real it cannot be touched with the hands or grasped with a single thought. Heaven seems to lift me up when all else is taken down by the weight and strife of the world.
I imagine my son sees this far greater than I. He is wrapped up in the Father’s Light, never touched by darkness. Set free in a dying body. A reality I know nothing of at this point, but I will know someday. This takes the sting out of the night, the night is not as dark as it was. One glimpse of light, a shimmer of hope. I can rest now and see the peace as if I am holding it in my hands. I know the One who holds me in His hands. The One who commands the darkness to flee, it does, He is doing it in me.