Those nine months a mom carries her baby are filled with joy, anticipation, and a dose of uncertainty. What the new parents hope for is their bundle of joy to be healthy. Sadly, that is not always the case.
Jennie Wilklow, from Highland, New York, couldn’t wait to meet her daughter. She and her husband were over the moon to hold her in their arms. All the ultrasounds and doctor’s appointment suggested the baby was healthy, so they were eased and never thought sweet Anna would be born with a condition that would change all of their lives forever.
Jennie delivered Anna via C-section at 34 weeks. Doctors told her she looked beautiful and that was all Jennie needed to hear at that point.
Shortly after, the proud mom heard her daughter cry, and that was just another sign that everything was right with her little jewel.
When her husband visited Jennie, he was strangely silent and looked worried and puzzled.
“My husband’s silence scared me; he just sat in shock as the doctor left, and I prodded for more info,” Jennie shared with Cafe Mom.
“He just kept saying, ‘It’s bad.’ What does that even mean? I thought in my head. He told me, ‘Jennie, I looked in her eyes, and she has the most beautiful soul.’”
Anna was diagnosed with harlequin ichthyosis, a rare condition that causes thick diamond-shaped plates that are separated by deep cracks. “As they tried frantically to help her, her skin hardened within seconds (of birth). After hardening, it began to split, causing open wounds all over her body,” Jennie told Cafe Mom.
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Although doctors weren’t sure she would survive, Anna beat the odds and is thriving. “She was beauty in the purest form,” her mom said.
There isn’t cure, and the treatment is quite demanding as it requires constant baths and keeping the skin as much moisturized as possible. “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 though it seemed so trivial, it was what I struggled with most,” Jennie said.
In an attempt to raise awareness about this condition, Jennie posts photos of Anna on her Instagram page harlequindiva. She opens up about the everyday struggles and what it is like to have a child with harlequin ichthyosis.
“Anna captured everyone’s hearts because she is 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,” Jennie told Cafe Mom.
She adds, “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 will show the world what true beauty is.”
Buttons and Memories
I miss my mom. I used to push all the buttons just as she would walk down the aisle, a mischievous glint in my eye. Each time we visited the grocery store, I’d dash ahead, my small fingers dancing over the colorful buttons of the self-checkout machine. With each beep, she’d turn around, half-laughing, half-exasperated. “You little rascal! One day, you’re going to break it!” she’d say, shaking her head, but her smile would give her away. Those moments were filled with laughter and light, the kind of memories that could brighten even the dullest days.
Since her passing, the grocery store has become a hollow place for me. I walk through, the automatic doors sliding open with a soft whoosh, and I feel the weight of the emptiness settle in my chest. The shelves filled with brightly packaged goods seem to mock my solitude. I can still hear her voice, echoing in my mind, reminding me to pick up my favorite snacks or to try a new recipe. I wander through the aisles, my heart heavy, searching for a piece of her in every corner.
I remember how she would linger by the produce, inspecting the apples with care, always choosing the shiniest ones. “The best things in life are worth taking a moment to choose,” she would say, her hands gently brushing over the fruit. Now, I find myself standing there, staring at the apples, unable to choose. They all seem dull and lifeless without her touch.
The self-checkout machines are still there, their buttons waiting to be pressed, but they feel like a cruel reminder of what I’ve lost. I can’t bring myself to push them anymore. The last time I stood in front of one, the memories flooded back. I could almost hear her laughter, feel her presence beside me. But it was just a memory, fleeting and painful.
Every week, I return to the store, hoping that somehow it will feel different, that I’ll find a way to connect with her again. But the aisles remain unchanged, their fluorescent lights buzzing overhead like a persistent reminder of my loneliness. I see other families laughing and chatting, and I feel like an outsider looking in on a world that no longer includes me.
One evening, as I walked past the cereal aisle, I spotted a box of her favorite brand. It was decorated with bright colors and cheerful characters, a stark contrast to the heaviness in my heart. I hesitated for a moment, then reached out and grabbed it, a sudden rush of nostalgia washing over me. I could almost see her standing beside me, her eyes twinkling with excitement. “Let’s get it! We can make our special breakfast tomorrow!”
With the box cradled in my arms, I made my way to the checkout. I felt a warmth spreading through me, the kind of warmth that comes from cherished memories. But as I stood there, scanning the items and watching the screen flash numbers, I realized that I was alone. The laughter we shared, the spontaneous dance parties in the kitchen, all of it felt like a distant dream.
When I got home, I placed the box on the kitchen counter, a bittersweet smile tugging at my lips. I thought about making pancakes, just like we used to, the kitchen filled with the scent of vanilla and maple syrup. I reached for my phone to call her, to share the news, but my heart sank as reality set in. There would be no more calls, no more laughter echoing through the house.
That night, I sat in the dark, the box of cereal beside me, feeling the weight of my grief settle in. I poured myself a bowl, the sound of the cereal hitting the milk breaking the silence. As I took the first bite, tears streamed down my cheeks. Each crunch reminded me of the moments we had shared, and I felt an ache in my chest for the warmth of her presence.
“I miss you, Mom,” I whispered into the stillness of the room. “I wish I could press all the buttons just one more time, hear you laugh, feel your hand in mine.”
But the buttons would remain untouched, just as the aisles of the grocery store would remain silent, a reflection of the emptiness I felt inside. And in that moment, I realized that while the world continued to move forward, I would always carry her with me, a bittersweet reminder of the love that once filled my life.
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