Jennie Wilklow was an excited mother-to-be without a thing to worry about until her water broke when she was 34 weeks pregnant. The stats were not alarming but they did have to do a C-section because the baby was breech. She felt calm and wonderful as she was going through the process but that all changed quickly after Anna was born.

At first, she was listening to how everyone talked about her beautiful little girl. Suddenly, however, there was a hushed panic in the room as doctors were secretly whispering and it terrified her. Her husband also frightened her when he just kept repeating, “it’s bad.”

Only seconds after being born, Anna’s begin to harden and crack open. It was an extremely rare condition, something that most people have never even heard of. It is known as Harlequin Ichthyosis and thanks to the bravery of this family, it is something that many people hear about for the first time.

“Visions of my daughter, the little girl I had thought about, prayed about, and planned for years for was here, finally. 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 gone, 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.”

She asked if her daughter was all right but the doctors said they needed some time to talk about things. She didn’t ask any more questions after that. She just knew that her life was going to be different.

When she was born, Jeannie’s husband had looked into Anna’s eyes but they became swollen shortly after and wouldn’t open for many days. He told her that things are bad but he also said the following:

“Jennie, I looked in her eyes, and she has the most beautiful soul.”

Jeannie continued to try to be as brave as possible but on the inside, she was falling apart. When the doctors placed her daughter into her arms, she realized the extent of what was wrong. For two days, she struggled to stop herself from looking things up on the Internet because she was afraid it would say that her daughter had no quality of life ahead of her.

“I allow myself to admit this thought 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.”

Her husband came to pick her up from the hospital and he said that Anna was not given a high chance of survival.

When Jeannie found out the bad news, she was sick at the thought of it. She couldn’t stand the thought that her little angel would not survive. She even said that she would have a hard time recovering if that happened.

“My Anna was a fighter. The NICU was easy, and she did amazingly 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.”

Jeannie started in as a very loving mother. She also needed to learn how to care for a baby that could not leave her humidity controlled environment without her skin turning into leather. She didn’t learn how to put on baby clothes, she learned how to apply Vaseline properly. She also learned how to put her in a plastic bag with a lining of sanitary cloth. At first, she thought that her daughter would have to live in the bubble forever but then things started getting better.

If you have a child with a disability, you already realize that you celebrate the small moments. She set the bar high and didn’t put restrictions on what her daughter would be able to do. That is when she decided to start sharing her daughter with the world.

“Anna teaches me every day to focus on the all of the positives, and the rest just falls into place. I once blamed myself for Anna’s condition. I thought it was the consequence 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 will show the world what true beauty is.”

Jeannie’s husband saw something special in his little girl’s eyes on that first day. Now the world can see it because Jeannie is sharing her perfection with everyone. It is a lesson to all of us about what is truly beautiful.