This is when my daughter is most beautiful, covered in layers of extra skin. Celebrate her instead of giving me pity. Mom of daughter with Harlequin echiosis wishes. People would stare at her beauty instead of hiding their stairs. As I sat alone in a hospital room in shock, staring at the wall in front of me, my brain was on repeat.
I just kept hearing what just happened. Visions of my daughter, my little girl I had thought about, prayed about, and planned for for years was finally here. But the moment that was supposed to complete my family, the last piece in the most beautiful puzzle was suddenly gone. Not just like the piece needed to be flipped over and over, but instead like someone picked up the puzzle and smashed it gone. Broken and alone.
All I could do was stare and picture her body in my arms. I had a normal pregnancy up until my water broke at 34 weeks. Still, her stats were great and we had a C section because she was breach. It was all very calm and wonderful until it wasn’t. When they took her out, I heard her cry and they said, she’s beautiful.
Those are the words every mother wants to hear. So I smiled and relaxed. Behind that curtain, though, things were becoming very terrifying. Pharliquinythiosis is not something most people, even those in the medical profession, are familiar with. As they tried frantically to help her, her skin hardened.
Within seconds after hardening, it began to split, causing open wounds all over her body. Behind the curtain, I began to sense more frantic, panicked feeling and I asked if things were okay. They told me yes and asked if I wanted more medicine to calm me. After that, I was out for the rest of what occurred. My husband was brought out and made to choose between larger hospitals and told she had a condition, but it was unknown what he was handed our Anna and was able to look deep into her eyes just moments before they swelled and she could not open them again for many days.
I woke up and reached for my husband and then was out again. Once again. I woke up and asked where he was and I was told he was with the baby. As they were taking me to recovery, I asked if the baby was okay and they responded, we’ll talk about that in the room. I didn’t ask more.
I didn’t want to know more. I felt as if somehow my wanting a girl so badly had jinxed myself and I wasn’t ready to hear bad news. I wasn’t ready for my life to be so different. I just wasn’t ready. First they told me it was a birth defect and I thought, It’s okay.
I can fix it. They make prosthetics, they can do surgery for sure in 2017. They can fix it. My husband’s silence scared me. He just sat in shock as the doctor left and I plotted for more info.
He just kept saying, It’s bad. What does that even mean? I thought. In my head, he told me, Jenny, I looked in her eyes and she has the most beautiful soul. Broken is the only way to describe the feeling as they placed her body in my arms.
For months her skin had been growing at an accelerated rate and all at once, upon hitting the outside air, it began to dry. Her fingers were being squeezed and turning blue and her toes were on the bottom of her feet from the skin being so tight. Everyone was frantically trying to diagnose her, but they’d never seen anything like this. She was fine. Everything was perfect.
And then it wasn’t just like that. What’s so scary about any tragedy or trauma is that it happens just like that. Things are fine, perfect even, and then suddenly they’re not. Your decisions in these moments define who you are and what you become. I spend most of the next two days trying not to look up her condition and thinking how she would have zero quality of life if she lived.
I allow myself to admit this because it was only in that moment, at the most confused and alone time of my life, that I thought maybe she would be better off dead. That question came into my head more than once and I tried to focus on other things. People came in and out. They told me stories of other people with this and how great they were doing. It seemed everyone had looked it up but me because I still wasn’t ready.
My husband came to get me from the hospital and bring me to Anna, and as he sat next to me, he told me how the doctor didn’t give her much, if any, chance of surviving. He thought he could probably keep her alive until I got there to see her. My heart stopped and I became immediately sick. I’d never been more affected by any words I had ever heard in my life. I decided at that moment that my Ana could not and wouldn’t die because, to put it simply, I would never be ready for that.
If the feeling I had just experienced were to last for more than a fleeting moment, then I would never recover. If she did. Mayana was a fighter. The NICU was easy and she did amazing with everything. Days later, when I saw her eyes for the first time, I remembered what my husband had said.
I remember being completely captivated with her and how I never saw what other people saw. She was beauty in the purest form. It wasn’t until they started trying to get her used to the outside air that I had trouble. The first day I had an outfit picked and I was so excited. But after five quick minutes out in the humidity controlled box, Anna became dry, her skin became thick like leather, and she cried in pain.
The next day we tried again, but this time we covered her in Vaseline. Then we wrapped her in a plastic bag lined with the sanitary cloth. She lasted longer this time, but as I held her, my heart broke. The nurse tried to be positive, but that day despair consumed me. I gave her back and hurried into the hall where I lost it.
I thought she’d have to be in plastic forever, and I didn’t understand how she would live. The day we brought her home was terrifying. As we left the hospital, a woman in the elevator tried to look at her. Our nurse was carrying the car seat, and she instantly guarded Anna, but really us from her reaction. The following two months were the worst because I felt alone and broken, consumed by despair.
My sister, mother, husband, and friends took over, and the only clothes she could wear were fleece pajamas. Every couple of hours I covered her with Vaseline and bathed her. For many hours of the day. I had dreamed for years about the things my baby would wear and thought it seemed so trivial. It was what I struggled with most.
As my husband worried more about me, he talked to a friend who had lost two babies, both at a month old. His friend said his wife would talk to me, and at first I completely rejected the idea. The day that woman walked into my house was the day the perspective became everything she told me her long story of two separate pregnancies and how both of her beautiful babies never made it home. Each one died at about a month old, and that’s exactly how old Anna was. When she came home, I thought how hard it must be for her.
She couldn’t even walk into Target without seeing everything her babies would never wear. I thought of the feeling I had when I heard Anna would not live and how this woman must feel that way. Always, deep inside, I imagined how crippling it must be for her, how she gets up every day and puts a smile on her face for the two boys she has now, a few moments in life are absolutely life changing. This was one of those moments I decided to focus on what I could have and not what I could not. I decided that if Anna could wear only fleece, then I would pick the cutest fleece pajamas I could find, and I would match her hat every day.
As time went on, Anna’s skin shed the extra layers, and I became more confident in caring for her. My sister and I tried every type of lotion and oil for her head. I worked for hours to remove the extra skin. Unfortunately, with it came all of her hair. I set small goals, and each time I reached one, I celebrated in a big way.
When you have a child with any type of disability, you find yourself rejoicing in even the smallest moments. I started to realize that if I put restrictions on what she was capable of, Then that would become what she would accomplish. So I decided to set the bar high. I decided she was capable of anything, and so was I. Remember the first day she wore jeans.
How excited I was to put different fabrics on her skin, how hats turned into headbands. As I was able to get her hair to grow again, small steps felt like giant leaps. And I made a decision to share Anna with the world. What my husband saw in her eyes on that first day Was instantly what the whole world saw. Anna captured everyone’s hearts Because she’s the purest form of perfection.
Doing the work every day is simple when I’m doing it for her and with every new accomplishment, the world celebrates with me. And it teaches me every day to focus on all the positives and the rest just falls into place. I once blamed myself for Anna’s condition. I thought it was the consequences of my greed Because I wanted her so badly. Even though my world was already perfect, I now understand that I was given her Because of the love I already carried in my heart for my daughter.
Anna was meant for me and I for her. And together, we’ll show the world what true beauty is. I don’t share pictures of Anna in the morning enough. This is when I feel she’s the most beautiful. I want the world to see the beauty that I see in her differences.
The breathtaking beauty her natural skin creates. Everyone wants to see the beauty past the skin, but how many can see the beauty that is her skin? Her beauty touches my soul and took my breath away, and it very much still does. Fast forward nearly two years, And I still get lost in her eyes. Sometimes when she crawls in bed with me in the early morning, I lay and watch her sleep.