A Holy Presence: Comfort in a Time of Darkness

When my son was born, the soft spot on the left side of his skull was closed. We didn't know that at first - he was born with a perfectly round head, 10 toes and 10 fingers, fat little thighs, a good strong cry, he was perfect. When he was seven months old, however, I noticed that his left eyebrow was straight while his right one was beautifully arched. I ran my fingers across his forehead and discovered a slight discrepancy: his head was curved naturally over the right side, but from the center of his forehead to just above his left ear, his head was flat.

It was a condition called "plagiocephaly". Isaiah's position in the womb was the probable cause. The doctors explained that the brain grows quite a bit faster than the skull in the first year of life. They said that the purpose of the soft spots was so that the skull could expand in order to compensate for the rapid growth of the brain - to allow natural and normal neurological development. The bones would then fuse together later. Because Isaiah's left side was prematurely closed however, his brain would grow lop-sided, underdeveloped in some areas, most likely overdeveloped in others.

The doctors then explained that Isaiah's case was affecting a part of the brain that was still mostly a mystery to scientists, so they couldn't be sure of what kind of neurological damage, or to what extent, would result if we opted not to do the surgery. We could be sure of a deformed head and at least mild learning disabilities. We could also be pretty sure he would struggle with physical coordination as well.

Immediately I felt as if my entire being was one great big magnet and the Holy Spirit zoomed in from all directions and encircled me with comfort and protection. I lived inside this cocoon, designed and delivered by God, for the next several months as we proceeded with plans to reconstruct Isaiah's head.

The day after his first birthday, he was sedated while still in my arms. His body went limp, his eyes rolled backwards, and a broad, loopy smile spread across his face. Then I handed him over to a nurse who cradled him in her arms and close to her chest before turning and disappearing behind the thick double doors that separated me from him.

As I felt him leave my arms, and listened to the sliding closure of the electronic doors, my attention turned once again to the sensations of the presence of the Holy Spirit.

"He who dwells in the shelter of the Most high will rest in the shadow of the Almighty..." Psalm 91:1

That shadow moved to cover me like a huge cumulus cloud moving under the sun to give relief from its relentless heat.

"I will say of the Lord, 'He is my refuge and my fortress, my God in whom I trust'". Psalm 91:2

Just as I surrendered my son to the medical staff at Riley, I surrendered my concerns to the Lord, my God.

The surgery was 9 hours and 45 minutes long. They had to slice his skin from ear to ear and pull his face off the bone. Then they cut the bone from ear to ear and across the eyes and the bridge of his nose. The next step was perhaps the most crucial - separating the bone from the brain. There is a tiny membrane that serves as a fine adhesive between bone and brain. The neurosurgeon had to whittle them lose, careful not to cut or damage one as that would result in the loss of sight for Isaiah.

Once his forehead was separated from his body, they cut the bone in half to reshape it using a thin titanium wire to hold the pieces together. Finally, the newly formed bone was replaced over Isaiah's brain and fastened to the rest of his head with more wire. His face was pulled back over the bone and sewn in place with 157 stitches.

Throughout the duration of the surgery I stitched on a quilt I was making - I called it "love energy". And I was keenly aware of a sensation that likened my driving the needle and thread in and out of the fabric over my lap to the Holy Spirit who was stitching His presence in and out of every fiber of my being.

On the 8^th day after surgery, a seeping crack began to open in the outside corner of Isaiah's right eye. He was sitting on my lap facing my mother who sat across from me. I was bouncing him on my knees and we were all enjoying the cackling laughter that accompanied his flailing arms when suddenly, he stopped, took in a quick, deep breath, and his body turned stiff. I stopped bouncing my knees and I too, turned stiff. Everyone in the room leaned forward, eyes intensely focused on Isaiah. Time turned thick and slow. Isaiah very deliberately turned his head to the left and stretched his neck forward, jutting out the right side of his face. We all watched with tardy, fluid movements of our own to get a closer look at what he was doing or thinking or feeling. There was an energy coming out of that gooey crack in his eye, almost like a laser beam, and it was aimed directly at Grandma.

"Well, what's the matter with him?" she asked. With that, Isaiah was able to match blurry sight with familiar sound; his face broke into a delighted little smile and he laughed with a joyful recognition. We all broke into celebration for we knew then that he wouldn't be blind.