“My brain was on loop while I sat alone in a hospital room in shock, staring at the wall in front of me.” ‘What just happened?’ I kept hearing. My daughter, the tiny child I had imagined, hoped for, and prepared for years, had finally arrived. But the moment that was intended to bring my family together, the final piece in the most beautiful puzzle, was suddenly gone–not just because it needed to be flipped over, but because it was picked up and broken. All I could do was look, seeing her body in my arms, broken and alone.
My pregnancy was uneventful until my water broke at 34 weeks. Her stats were still excellent, and we had to have a C-section since she was breach. It was all so peaceful and lovely–until it wasn’t. I heard her cry when they took her out, and they said, ‘She is gorgeous.’ I smiled and relaxed since they are the things every mother loves to hear. But things were getting a lot scarier behind that veil.
Harlequin Ichthyoids is a condition that few people, including those in the medical field, are familiar with. Her skin hardened in seconds as they frantically tried to help her. It began to split after hardening, causing open wounds all over her body. I sensed their frenzied, scared feeling behind the curtain and asked whether everything was okay. They said yes and asked if I wanted more drugs to calm me down; after that, I was out for the remainder of the incident. My husband was summoned and forced to pick between two larger hospitals, where he was informed that she had a problem, the nature of which was unclear. He was given our Anna and was able to look into her eyes for a few moments before they swollen and she couldn’t open them for days.
I awoke, reached for my husband, and then went back out. I awoke again and inquired about his whereabouts; I was told he was with the infant. When I asked if the baby was okay as they drove me to recovery, they said, ‘We’ll talk about that in the room.’ I did not wanted to distinguish any more, hence, did not question anything else and felt as if I had jinxed myself by wanting a girl so much. I simply wasn’t prepared.
They first told me it was a birth defect, which I believed was fine because I could correct it. They build prosthetics and can very certainly perform surgery in 2017; they can repair it. My husband’s silence alarmed me; he simply sat in stunned silence as the doctor walked away, and I urged him for further information. ‘It’s bad,’ he kept repeating. What exactly does that imply? In my brain, I pondered. ‘Jennie, I gazed into her eyes and she had the loveliest spirit,’ he said.
The only way to express how I felt when they laid her body in my arms was broken. Her skin had been developing at an accelerated rate for months when it suddenly began to dry when exposed to the outside air. Her toes were on the bottom of her feet due to the skin being so tight, and her fingers were going blue. Everyone was feverishly trying to figure out what was wrong with her, but they’d never seen anything like it before. She was fine; everything was perfect until it wasn’t–all of a sudden.
What makes every catastrophe or trauma so terrifying is that it can strike at any time? Things are fine (almost perfect), and then they aren’t. In these moments, your choices shape who you are and what you become. I spent the following two days attempting to avoid researching her health and worrying about how she would have little quality of life if she lived. I allow myself to acknowledge this thinking since it was only at that time, when I was most lost and alone in my life, that I considered whether she might be better off dead. That question popped into my thoughts several times, and I attempted to ignore it. Individuals came in and out, telling me about other people who had this problem and how well they were doing. Everyone seemed to have looked it up except me because I wasn’t ready yet. My husband came to pick me up from the hospital and take me to Anna, and as he sat next to me, he informed me about how the doctor didn’t think she had much of a chance of living. He figured he’d be able to keep her alive till I arrived to see her. My heart stopped beating, and I fell sick almost instantly. Any words I’d ever heard in my life had never made such an impact on me. I resolved right then and there that my Anna couldn’t and wouldn’t die because, simply put, I’d never be ready for it. If the sensation I’d just had lasted longer than a split second, I’d never be able to recover if she died.
Anna was a fighter in my family. The NICU was straightforward, and she handled everything admirably. When I saw her eyes for the first time a few days later, I remembered what my husband had said. I recall being utterly enthralled with her and never seeing what other people saw. She was the epitome of beauty.
I didn’t have any problems until they tried to acclimate her to the outside air. I had an outfit planned for the first day, and I was really happy, but Anna grew dry after only five minutes out of the humidity-controlled box. Her skin had thickened to the point of being leathery, and she shouted out in agony. We tried again the next day, but this time we covered her with Vaseline. We then placed her in a plastic bag with a sanitary towel inside. This time she lasted a little longer, but my heart bled as I held her. The nurse attempted to be upbeat, but I was depressed that day. I returned her and dashed into the hall, where I misplaced it. I assumed she’d have to live in plastic for the rest of her life, and I couldn’t see how she’d manage. It was terrible the day we brought her home. A woman in the elevator tried to gaze at her as we left the hospital. Our nurse, who was carrying the car seat, immediately shielded Anna (but actually, both of us) from Anna’s reaction.
The next two months were the most difficult for me because I felt alone and damaged, and I was obsessed by sadness. My sister, mother, husband, and friends took over, and she was left with only fleece pajamas to wear. I bathed her for many hours and slathered her with Vaseline every couple of hours. For years, I had fantasized about the clothes my kid would wear, and despite how insignificant it seemed, it was the aspect of parenting that I battled with the most. As my husband’s concern for me grew, he spoke with a friend who had lost two babies, both at the age of one month. His friend stated his wife would speak with me, and I initially dismissed the idea.
The day that woman entered into my house, my outlook changed completely. She told me about her two pregnancies and how both of her beautiful babies died before she could bring them home. Each one died when they were approximately a month old, and Anna was exactly that age when she returned home. I imagined how difficult it must be for her. She couldn’t even walk into Target without seeing all the clothes her children will never wear. I remembered how I felt when I learned Anna would not live, and how this woman must feel the same way all the time. I imagined how debilitating it must be for her–how she gets up every day and smiles for the two boys she now had.
There are a handful instances in life that will change your life forever. One of those times had arrived. I made the decision to concentrate on what I could have rather than what I couldn’t. If Anna could only wear fleece, I determined to purchase the cutest fleece pajamas I could find and match them to her cap every day. Anna’s skin began to shed the extra layers as time passed, and I gained confidence in my ability to care for her. My sister and I experimented with various lotions and oils. I spent hours removing the excess skin from her head. Unfortunately, it took all of her hair with it. I set tiny goals for myself and congratulated myself when I achieved them.
You find yourself rejoicing in even the tiniest moments when you have a child with any form of impairment. I realized that if I put limits on what she could do, that’s exactly what she’d do, so I decided to raise the bar. I decided that she, like me, was capable of anything. I recall how delighted I was the first time she wore jeans–how excited I was to try on new materials, how caps changed into headbands, and how I was able to get her hair to grow again. Small steps felt like enormous leaps, and I decided to tell the world about Anna.
On that first day, what my husband saw in her eyes became suddenly visible to the rest of the world. Anna has won the hearts of everyone because she is the epitome of perfection. Doing the work every day is effortless when I’m doing it for her, and the world rejoices with me with each new accomplishment. Every day, Anna teaches me to focus on all of the good, and the rest comes into place. I used to blame myself for Anna’s plight. I assumed it was the result of my desire for her, despite the fact that my world was already beautiful. I now realize that she was given to me because of the love I already had for my daughter. Anna was destined for me, and I for her, and together we would demonstrate true beauty to the world.”