Recall that Haylie came down with spinal meningitis at just twelve days old and was rushed away to Riley Children’s Hospital in the middle of the night to try and save her life. The ambulance driver had distinctly told my stepdad not to try to keep up with him. He advised John to follow the speed limit, and to check in at the emergency room when we got there. The young doctor promised us that he would do his best, but really, he made us no promises. Haylie’s condition was bad. I knew it. Everyone knew it.
It was a long, quiet drive up State Road 37 in the dark. We had to stop once for John to get some coffee and for me to pee (I’m still known for having the smallest bladder in my family). I bought a small package of peanuts and ate them slowly in the backseat of the car, sucking the salt all the way off of each one before biting into it. I washed them down with a diet coke. What the heck, I thought, she’s not even drinking my breast milk now anyway. I had become hyperaware of the effect that my food consumption had on Haylie’s digestion, and on subsequent diaper contents. When I ate broccoli, it gave her gas every time. I was not taking any chances with the caffeine. Well, not until now.
As we got closer to our destination, in downtown Indianapolis, the city lights twinkled up around us. I looked out the window, wondering what other people were doing awake at this time of night, thinking I had seen way too many of the wee hours these last two weeks. Haylie would be two weeks old tomorrow. Then my focus shifted from the lights on the buildings in the distance to my own reflection in the dark window. I looked much the same on the outside. My eyes were puffy though, and my long hair was escaping its shabby updo, falling out around my face and neck in unruly wisps. The deeper changes occurring were not yet visible.
By the time we found her, Haylie was quarantined in the Newborn Intensive Care Unit in critical condition. We had to put on big yellow paper ponchos and masks to be allowed in to see her. She had been given a large “bolus” dose of Phenobarbital to stop her status seizing and was completely unconscious, lying flat on her back, tubes and wires coming out of everywhere. I spent most of the night alone in that room with her, sitting in a chair in the corner. She looked so small and helpless now, and somehow I knew this was all out of my hands. Rubbing the single white newborn sock I had found in my pocket like a talisman, I got real with myself.
The truth was that I hadn’t felt ready to become a mother – not now, not like this. I had never admitted to anyone how scared shitless I was about this whole thing. How disappointed I was with myself. How much I missed my guitar-playing, window-tapping, movie-watching guy and carefree nights on a rooftop. How I felt that whole parts of my future life and possibilities had simply collapsed in front of me, where the entrance to the tunnel of Single Motherhood simultaneously opened. Perhaps this was a gift. Perhaps I was about to be relieved of this responsibility bestowed too much, too soon. And I felt guilty for feeling that way. Maybe I was being punished for feeling that way.
I’m sorry, I said. I’m sorry I didn’t really want you.
But that wasn’t completely true either. Here I was, a Mother. The transformation had already happened. I absolutely loved this little being with every cell in me. She came from me. I made her. It was done and it was beautiful. And whatever happened now, she was a part of me. Literally. The research shows that fetal cells continue to circulate in the mother’s system for years after birth. There was no going back, and I didn’t want to anyway.
So, I did what any sleep deprived young mother would do in the middle of the night in the Newborn ICU. I had a long talk with God. I came clean about my ambivalence about becoming a mother. I confessed all the mixed feelings I had been so ashamed to have. I confessed my thoughts about trying to somehow get out of it and, now, my total change of heart. I promised that if I could just keep her and have the chance to love her with my whole heart, that I would do anything, anything at all. Please, God, just let me keep her. I love her so. I chose twice to become a mother – once when I found out about the pregnancy and decided to go through with it, and again that night in the hospital when I made that deal with her and God to be all in.
Sometime the next afternoon, the White Coats tracked me down in the long corridor outside the NICU. I remember the conversation so distinctly. My mom and John were there as well as one of his sisters – I remember because at the words “brain damage,” she gasped just a little and grabbed my mom’s hand. Some of the other words were “epilepsy,” “learning disabilities,” “visual problems,” “motor problems,” “cerebral palsy.” My mom asked a lot of questions. They replied with a lot of, “We just don’t know’s.” I stood very still and listened with my whole body. I even listened with my knees. This was all happening on the surface, like waves. It was a very wavy moment. And at a deeper level, was a strange stillness. All I knew was that something was happening.
The infection had caused the lining of Haylie’s brain to swell so much that it broke blood vessels all over the place. There were several areas of profuse bleeding on her brain that they could see with the CT scan, and I remember the taller doctor pointing to his own head to demonstrate. Occipital Lobe (in the back), Temporal lobes (on the sides), and Frontal lobe (now tapping on his own forehead). The good news was that, at this point, she seemed to be mostly out of danger. In other words, she wasn’t going to die. But she was going to stay in the hospital for at least a couple of weeks. There was the course of antibiotics to finish, first of all, and she would be going through some testing to see how what was left of her brain was functioning. There were still many unknowns. Still no promises.
When my mom and John left that evening to head back home to Bloomington, he stuck fifty dollars in my hand and reminded me to get something to eat. I hugged them goodbye at the front doors of the hospital, popped in the cafeteria to grab a chocolate chip cookie, and made my way up the elevator, alone, to spend another night in a hospital chair.
I began this blog to share pieces of the book I'm writing about my daughter's courageous march down the path from brain injury to wellness. It's the story of how one little girl overcame the odds, a long list of labels, and limiting diagnoses. I hope it inspires other parents to dream bigger by knowing what is possible.