For family of disabled teen, daily struggles teach ‘incredible love’

| April 22, 2015 | 4 Comments
John, left, and Ann DeJak of St. Agnes in St. Paul enjoy a walk with their son Tom, the oldest of their eight children. Dave Hrbacek/The Catholic Spirit

John, left, and Ann DeJak of St. Agnes in St. Paul enjoy a walk with their son Tom, the oldest of their eight children. Dave Hrbacek/The Catholic Spirit

John and Ann DeJak take their oldest son, Thomas, out in front of their Richfield home and strap him into a stroller.

They make sure he’s bundled up on this brisk spring day. They also remember to take his bottle, which helps keep him calm.

He coos with delight as they head down the driveway and into the street. He flashes a big smile, then purses his lips to kiss his mother.

It’s an endearing scene, but a bit out of the ordinary — Thomas is 15 years old. Born with a condition affecting the joints called Arthrogryposis, he has limited use of his arms — he can do little more than swing them — and also has a developmental disability. His parents say he has the intellectual capacity of a 1-year-old, and that probably won’t ever change.

Despite Thomas’ need for around-the-clock care, Ann and John describe their son with joy, and say they did not waver in their desire to have more children. Seven more came after Thomas: John Paul, 14; Helen, 12; Julia, 10; Meg, 7; Joseph, 5; Anna, 3; and Francis, 1.

The family belongs to St. Agnes in St. Paul, where three of the children go to school. John is headmaster and teacher at Holy Spirit Academy in Monticello.

“We wanted a large family,” said Ann, 41. “We were hoping for many children. That was our thought from the beginning.

“[Tom’s condition] didn’t change anything, quite frankly. We didn’t even wait long until the next one came along. We were very, very open.”

Thomas’ due date was Oct. 1, the feast day of Ann’s favorite saint, St. Therese of Lisieux. Four and a half months after Thomas was born — and just three days after his release from the hospital — Ann took a pregnancy test and found out baby No. 2 was on the way.

That child, whom they call “J.P.,” is very close to his older brother, despite having to crawl out of bed late at night when Thomas starts banging on his bedroom door.

The banging is one of Thomas’ most frequent methods of communication. He can’t use words, so he expresses himself with drumbeats on the doors.

“I love him, he’s awesome,” said J.P., who is homeschooled this year and plans to attend Holy Spirit Academy next year. “We play all the time.”

For the DeJak family, tackling the daily chores associated with Thomas’ care draws  them to the heart of what their Catholic faith is all about.

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“I think [in] taking care of such a dependent child, you get down to the nitty gritty of what love is, in terms of day in, day out caring [for him] despite the difficulty,” Ann said.

John put their lifestyle — and the opportunity to practice virtues such as patience daily — in simple terms.

“Being heroic is changing the diaper,” he said.

And washing the soiled bed sheets, Ann added, noting that laundry is a daily chore.

Despite the trials, there is unmistakable joy in their family life. It grows in the midst of chaos that often leaves Ann and John with little time for themselves, and no hope of a vacation from the demands that come with a fully dependent child.

“I would say the joy is in the little things,” Ann said. “The joy is on Tommy’s face. The joy is in his freely given smooches all the day long. The joy is [in] those rare moments where you see the older sister helping the first-grade younger sister with homework because they know mom is way too busy.”

And, maybe most of all, the joy is in seeing how the children have rallied around their older brother who is unable to care for himself. It was most eloquently expressed in a first-grade letter written by Meg when her teacher asked students to describe their dreams for their lives.

“Meg writes as a first-grader, ‘My dream is to help my brother. I want to take care of him when I am older.’” Ann said. “That’s something I didn’t teach. We just live it. We do it with joy.

“There are some days when it’s very, very difficult. But, part of the joy is the hope that we have for Tommy in the next life. This isn’t all for nothing. His suffering has great merit, and teaches incredible love.”

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In partnership with the publications of all Minnesota dioceses, The Catholic Spirit is launching an 11-part series on families based on the meeting’s 10 themes.




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