If you asked my daughter to describe herself, she would say she loves being creative and hanging out with friends.

Hannah would say she likes to wear fancy clothes and she is enjoying her first year of middle school because she gets to change classes and see different people in each class.

Finally, she might tell you she has had a lot of surgeries since she was a baby.

My daughter, Hannah Elizabeth Shealy, was born 11 and a half years ago at Lexington Medical Center.

It was January 2008.

I had a normal pregnancy and was excited for Hannah to be born.

I clearly remember that day and especially the moment I and saw Hannah for the 1st time.

A rare condition

My first thought was, “What’s that on her hands?” It looked like she was wearing skin-colored mittens.

Next, I looked at her face and felt confusion.

She looked … different.

The next I knew, the nurses took her away.

Later that day, after seeing numerous doctors and geneticists, we were told that our baby girl was born with a rare condition called Apert syndrome.

That was the most overwhelming day of my life.

The geneticists shared with us all the challenges Hannah would face.

Despite this, we knew God created Hannah. We trusted that He allowed her to be born this way for His perfect purposes.

I remember my husband telling me that he imagined God put her in our lives to teach us more than we would ever teach her.

I didn’t imagine how right he would be.

Hannah’s lessons

Hannah spent her 1st 10 days in the hospital learning how to drink from a bottle. She began therapy at 3 months old.

She worked with a speech therapist to learn how to drink and eat. She worked with a physical therapist to learn how to hold a bottle, to sit up, crawl and walk.

Many of the things that come to us naturally she had to work hard to do.

Hannah never complained and never gave up.

Every milestone was cause for celebration because she worked so hard.

Hannah has persevered and figured out how to do just about anything a typical 11-year-old can do.

She does not give up and has succeeded in anything she puts her mind to. She is my inspiration.

Hope in Texas

Because of the way Hannah’s bones have grown, she has had to undergo 16 surgeries to date to gain and retain healthy function of her body.

We found a surgeon in Dallas, TX, who specializes in her syndrome.

We traveled to Dallas for about half of her surgeries.

Watching Hannah persevere through these surgeries has helped me to appreciate many of the abilities that we take for granted.

Hannah has had multiple surgeries throughout her childhood to remodel her head and face so that her brain has room to grow and to improve sleep apnea.

Hannah’s fingers and toes were fused at birth, and she has no joints in her fingers.

She’s had multiple surgeries to separate her fingers and toes and to create permanent bends in her fingers to help her grip things.

Hannah’s had surgery to correct her hip joints, to correct her cleft palate and multiple sets of ear tubes.

These surgeries have been done to help give Hannah capabilities that you and I take for granted every day.

Watching Hannah has reminded me to slow down and focus on what I have and what I can do. She reminds me not to take anything for granted.

God’s blessing

Hannah amazes me in how she doesn’t seem to worry about how she looks or what other people think about her.

God has given me Hannah to teach me what is important in life.

I never imagined on that day she was born what a blessing she would be. She is my reminder that blessings often come in disguise.

Beth Shealy is a writer, mother and employee of Lexington Medical Center.

“If there were one thing I’d want for my children, it would be to have this type of faith and in trust in God.”
– Beth Shealy