In December I shared the first part of Evangeline’s story with you. I told you how questions arose about my daughter’s health during the pregnancy and how she was born with a large bump on her lower back. I told you how I almost passed out in the delivery room and how I wondered what the Lord was trying to tell us with our new daughter’s name, which means “bearer of good news.” I told you to expect the unexpected.
It is providential that I am writing this during the first week of Lent and as I pass the midpoint of my Exodus 90 journey. My fraternity began the program on January 21st. Everyone considering E90 seems to focus on and dread the asceticism. I recently joked with my E90 brothers that my brain has finally given up on telling me when I am hungry. I feel hunger pangs, of course, but instead of being irritated by it, I am reminded of why I am doing E90. Ironically, it is the asceticism, which everyone fears the most, that has made me more open to receive God’s grace. This has brought me great peace. It is strange to think that peace would be possible, or even likely, in the midst of suffering, but it is.
The doctors in Boca Raton concluded that Evangeline had tethered cord syndrome. A fat mass had developed on her lower back early in the pregnancy and her spinal cord became caught in the lipoma as she grew in the womb. A surgery was necessary to untether Evangeline’s spinal cord and place it in its proper place within her spinal column. Her future was uncertain since there were potential complications, including hydrocephalus and possible limitations related to her future mobility. Whether she had Dandy-Walker Syndrome was also still up in the air. Julie and I prayed and cried together. And then it was time for me to leave my wife and family in Boca Raton and go to Miami with my tiny daughter. I was conflicted about leaving Julie and going to Miami alone, but just as she had assured me that Evangeline would be our daughter’s name earlier that day, Julie again assured me that it was okay for me leave her in Boca Raton to be with our daughter.
It was about nine o’clock in the evening when we left. I kissed Julie goodbye and met with the ambulance crew. I walked behind them as they pushed Evangeline along in her isolette through the hospital’s quiet hallways. Evangeline was very peaceful, barely crying or stirring as they moved her into the ambulance. The ambulance crew remarked about that and it made me feel better since she didn’t seem to be in any pain. The weather conditions were like any other that night, but I was conscious of the darkness.
When we arrived at the children’s hospital it was very quiet and peaceful there just as it was in Boca Raton an hour earlier. Again I walked behind the isolette as they pushed Evangeline to the children’s hospital NICU. A nurse changed her first diaper and commented that it was a “good one.” I spent a good deal of time looking at my beautiful daughter. My heart was bursting for her. Then I went down to the lobby. The nurses told me they would call me if a room opened up, but there was currently no place in the NICU where I could sleep.
Other than a security guard, I was the only one in the lobby. I put some chairs together as a makeshift bed and then I laid down. I had a backpack with some water, my cell phone, an external battery and charging cord and a light pullover to keep me warm. I folded up the pullover and put it under my head to use as a pillow and then I draped one of the sleeves over my eyes. Though it was dark outside, the bright lights in the lobby were making it difficult for me to settle down. I put my headphones on and listened to some music, but I could not fall asleep.
The lights above flooded down on me. The darkness outside pressed in on me. And then the sound of a very loud vacuum cleaner buffeted me through my headphones. Any anger that I had felt earlier subsided, but now I was filled with terror. I wondered what would happen to my daughter. Would they perform surgery on her in the morning? Would she survive? If she survived, what challenges would she have in her life? Would she ever walk? Would she be in pain? Would she be cognitively impaired? I had no answers.
Around 3:00 AM, after the cleaning crew went to attend to some other area of the hospital, I started to doze in and out of sleep and then a song came on my music app that I had never heard before. I woke up. It was You’re Not Alone by Meredith Andrews. Tears came and then I prayed. I had been praying throughout the day, but this time it was total surrender.
I asked God to heal Evangeline, but if that was not his plan for her then I told Him I would accept his will for her and that I would raise her to love Him nevertheless, but I would need his grace to get me through this. God gave me peace then. I still felt concern for what was ahead, but the terror was gone, and I trusted that everything was going to be okay. And then I slept.
During Lent we should willingly follow the Lord into the desert just as Jesus did after his baptism and just as the Israelites did when they fled Egypt. The desert is frightening. It is a place of discomfort and dryness. It is a place where the evil one prowls about seeking to devour us. It is a place of suffering and of the unknown. It is reasonable for us to want to avoid the desert, but it is in the desert where we are refined and perfected. It is there where we detach from all of the things that enslave us to this world and its ruler. It is in the desert where, as the darkness pursues us and the heat saps our strength, we can choose to surrender to God and be rescued by his peace.
I love you, Lord, my strength, The cords of death encompassed me; the torrents of destruction terrified me. The cords of Sheol encircled me; the snares of death lay in wait for me. In my distress I called out: Lord! I cried out to my God. From his temple he heard my voice; my cry to him reached his ears. He parted the heavens and came down, a dark cloud under his feet. He made darkness his cloak around him; his canopy, water-darkened storm clouds. He reached down from on high and seized me; drew me out of the deep waters. He rescued me from my mighty enemy, from foes too powerful for me. They attacked me on my day of distress, but the Lord was my support. He set me free in the open; he rescued me because he loves me. (Ps 18:2, 5-7, 10, 12, 17-20, NABRE)