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Finding joy and hope in unexpected places: Nolan’s story

April 09, 2014

June 2nd, 2011 is a day that Melissa will never forget. Her life was forever changed when her newborn son, Nolan, was diagnosed with encephalitis and meningitis. He was airlifted from a local hospital and admitted to the pediatric intensive care unit here at Arnold Palmer Hospital.

Nolan was only a week old when Melissa began to suspect that something was wrong with her son. He started crying uncontrollably and was having trouble nursing. Over the next week, as Melissa took him to hospital and doctor’s visits, he became lethargic and stopped responding to his surroundings. His eyes began to twitch. She was convinced that something was wrong.

Nothing could have prepared her, however, for the news she received once they arrived in the ICU. Nolan had a severe infection in his brain and central nervous system, one that many children do not survive. Tests showed that his brain had been badly damaged from the infection, and no one knew what the future would look like for Nolan.

Melissa remembers the moment she received the news:

“I couldn’t grasp the meaning of what was being said to me. I felt like this was all a dream, like I was in a movie and this wasn’t real. This just can’t be true.”

As a 19-year-old single mother caring for her only son, Melissa was overwhelmed. Nolan spent a week in the ICU, and after a month-long hospital stay, they returned home. She was told that Nolan would probably never walk or talk or do the things that other children do. He would also need intensive, life-long medical care. Sometime in the next weeks, though, as Melissa slowly began to comprehend the reality of Nolan’s needs, something changed in her.

“It was a huge awakening for me. I knew that God gave me this child for a reason. I had to put one foot in front of the other and do what Nolan needed me to do for him, do what was going to make him the most functional. I developed this fighting mentality; I decided I would fight for everything he needed.”

She made the decision to hold onto hope- to have faith that one day Nolan would defy the odds and achieve some of the things that doctors thought may be impossible for him. That hope and faith keeps her fighting every day.

Melissa also decided to reach out to other parents who are experiencing similar circumstances. She searched online and on Facebook and joined support groups. She listened to the stories of other families and developed relationships that helped her feel less alone. She also began to research anything and everything about Nolan’s condition, therapies that could help him and surgeries that he would eventually face.

In the past three years, Nolan has endured five surgeries and countless hours of therapies, doctor’s visits, hospitalizations and treatments. But, that’s not what defines his life. His life is defined most importantly by his mother’s love for him. Nolan loves to be held. He loves to snuggle. He craves the attention that his mother gives to him. There is a sense of peace about him when Melissa is with him, because she knows him like no one else could. She knows what he needs, what he’s feeling even though he can’t communicate in traditional ways.

And Nolan has brought immeasurable joy to his mother as well.

As Melissa describes their journey over the last three years, she says:

“I love being Nolan’s mother. It’s my purpose in life, and I love taking care of him. Don’t get me wrong, it’s very difficult, but he has brought me so much joy. It’s amazing that such a little person could give me as much inspiration, strength and courage. He has showed me what life is all about and reminded me not to take a second for granted. He is my everything.”

Sometimes when people are getting to know Melissa and Nolan, they feel sorrow as they realize the gravity of Nolan’s physical and mental limitations. But, Melissa says, “I don’t want people to be sorry; Nolan is nothing to be sorry about. I want people to see the true joy and happiness and love that we share.”

Melissa also wants Nolan’s doctors, nurses and therapists to know that she credits them with saving her son’s life. The hospital has become a second home for them, and she describes her experience this way:

“Everybody here makes me feel the way I want to feel- that Nolan is loved, that our needs and wants for him are taken care of, that we are welcome. They look out for mine and Nolan’s best interests, and I trust them with everything."

In fact, Nolan’s journey has inspired Melissa to pursue her dream of one day becoming a pediatric nurse or nurse practitioner, and she is passionate about sharing Nolan’s story in order to help others better understand brain injuries.

While Nolan’s life may have turned out differently than anyone expected, one thing is for sure. He is a little boy who has never known even a moment without love. Nolan lives without many of the things that we often take for granted, but there’s one thing that has made the difference for him. He has a mother who is willing to give all of herself to ensure his happiness and well-being, to give selflessly on his behalf. He has unconditional, unwavering love, and that is the greatest gift of all.