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.”
A teenager coughs and requests her father to bring her to the hospital. Within hours, the heartbreaking reality unfolds… Explore the comments for more details.
What does bravery really mean? Is it the bravery to hold on when you know the end is close and the battle you fought so hard is lost, or is it the capacity to face terrifying things?
For a sixteen-year-old girl, bravery meant standing by her father, who never wavered even under the most trying circumstances.
A man by the name of Tom Mitchell told the following tale.
This loving father remembered his daughter complaining that she didn’t feel well and requesting to be taken to the doctor because she thought she had a sinus infection.
Yes, sweetie, I’ll come get you tomorrow after school. If you’d like, we can have supper together afterward,” he replied.
The next day, the two did enjoy dinner together, but it was not at their preferred eatery. Rather, kids were having difficulty swallowing the food at Fairfax Hospital’s pediatric oncology unit. These father and daughter would have more than 450 meals there together, not to mention the hundreds more in the years that followed.
Instead of a sinus infection, his daughter had a massive tumor that had gone to her lungs and collapsed one.
It was a genuine struggle. Even though they knew it wouldn’t be simple, they were committed to fighting as a team.
Hodgkin’s illness, stage four, was Shayla’s diagnosis.
Tom tried to convey to them what it meant to be brave and withstand the trials and problems life placed in front of them by purchasing two sterling silver “feather” bracelets and placing one on each of their wrists.
Then he made three promises: he would stay at the hospital every night until Shayla was cancer-free; he would wear the bracelet until then; and he would persevere as long as she did.
Shayla’s cancer struggle dragged on for years, during which she had blood transfusions, chemotherapy, radiation, painkillers, and more medication. Her body could not take all of this, and as a result, her heart grew weak and a defibrillator had to be quickly implanted within her chest.
Shayla was getting ready for chemotherapy one day when she started screaming, “Help me, Dad! I’m shocked by it! ..I’m shocked by it.
Tom continued his explanation of what had occurred. I drew her in and gave her my strongest embrace. It almost blew her out of my arms and stunned her once more. But I resisted letting go. That’s exactly how I hugged her, fiercely as I could. As swiftly as it had begun, it stopped startling her, and we hurried to the hospital.
As it turned out, the device’s maker had to recall thousands of them because they were malfunctioning, and Shayla’s chest contained one of them.
More chemotherapy sessions, blood transfusions, a botched bone marrow transplant, and more uncomfortable sleepless nights ensued. But until the very last, Shayla never once considered giving up.
“How in the world was I meant to talk to my sweet kid about this? How would I ever have the courage to tell my daughter that she was going to die? There’s a quote I once heard that kind of captures my thoughts. “Can a guy who is terrified still be brave? He can only be bold at that moment. I had to have courage for HER! Of course, I did have that talk with her, and despite how unbelievable it may sound, it ended up being the most incredible, lovely, magical, and fantastic conversation I have ever had in my life. I sincerely pray you never, ever have to have it. Tom gave a portion.
“Dad, am I still brave?,” she murmured in his ear.
Then he met her gaze directly and saw into her soul. He was aware that she was beyond tired of battling and that it was becoming impossible for her, but he suddenly came to a chilling realization. She exhibited bravery for him rather than for herself.
Shayla tragically passed away a few days later, but her father will always remember her bravery and strength.
Shayla, rest in peace.
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