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Tami Hauser practices using “yes/no” flashcards with her son, John Paul, who has lived nine years with a rare chromosomal disorder.

John Paul Hauser: enjoying each day

Asked by his mother if he wants the purple marker, John Paul Hauser touches a piece of paper with a thumbs-down image, indicating "no." But asked if he wants to play with the toy on his kitchen table, he touches a thumbs-up image, meaning "yes."

This visual communication tool helps the boy, who turns nine Oct. 9, answer questions and share his wants and desires. It’s a huge milestone, said his mother, Tami, a member with her husband, Tracy, of St. Margaret Mary Parish in Omaha. And he is beginning to learn to raise his right hand for "yes" and left hand for "no."

"He really is so smart," Tami said.

It’s pretty amazing, considering Tami and Tracy were told that John Paul, the youngest of their seven children, would not live beyond birth. Born with Trisomy 13, a genetic disorder that doctors say is incompatible with life, John Paul had no expectations for growing, thriving and learning.

Buttressed by prayers for the intercession of his namesake, the late Pope John Paul II – now St. John Paul II – the family never lost hope. And slowly but surely, John Paul’s progress is shocking doctors and surprising his family and friends.

Enjoying good health this past year, John Paul is readily expressing his personality, and he is quite playful and ornery, his mother said.

"He loves to rough house, and he is constantly trying to get his dad, brothers and grandfather stirred up," she said.

He also has become more visual, and reaches out and grabs the bushes during walks, and pulls things off the shelves at the grocery store, she said. Socially, John Paul is friendlier when meeting new people, Tami said. When people visit the family, he crawls over to them, and he likes to hold hands, she said.

In addition to celebrating his birthday this month, John Paul will celebrate the wedding of one of his respite caregivers – as a junior groomsman in the wedding.

"We are excited, because this is one of those rare and special life experiences that we get to add to his bucket-list of things that ‘John Paul got to do,’" Tami said. "He gets to wear a tux. He will be ridiculously cute!"

John Paul is at a new school this year – J.P. Lord Elementary in Omaha – that is geared toward children with special needs. The doors and playground are handicap accessible, and there are indoor swings and lots of adaptive equipment, Tami said.

For example, John Paul can practice walking up and down on a small set of stairs, and drive a little motorized vehicle.

The school is constructing a new building that will have a sensory gym with aroma therapy and an indoor swimming pool.

John Paul loves music, she said. He likes to play the piano, and goes to music therapy twice a week. Incorporating instruments, music therapy is a multi-sensory experience, engaging both sides of the brain, and for people who cannot talk, providing a non-verbal way to communicate and an outlet for expression, Tami said.

"John Paul is vocal when he is humming to music. People around him recognize it as humming and sing along with him," Tami said. "Music then becomes a way for him to communicate and bond with others."

Having John Paul in their lives is a rewarding experience, Tami said.

"He is still so full of laughter, and makes people smile," she said. "It might be that he giggles at something unexpected, or that he reaches out and grabs your hand, or that he gives you a big kiss. When you are around him, you can’t help but feel that you have just been gifted something wonderful."

But the most important gift John Paul gives his family is to trust in God, she said.

"We have a daily reminder of our need for God’s presence in our lives," Tami said. "In truth, we know that we are so blessed to have him. God has a plan for John Paul and it has been truly amazing for us to watch that purpose unfold."

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