EVANSVILLE, Ind. — Rebekah Grider’s eyes light up when she talks about her First Communion dress. And she claps her hands with joy as she tells her mother she wants to wear a veil — not flowers — on her hair on that special day.
Her mother’s eyes fill with tears at the mention of the day, a day she thought might never happen.
Summer Grider and her daughter live in Pocahontas, but they stayed at the Ronald McDonald House in Evansville, Ind., for eight weeks so Rebekah could receive treatment at the Feeding Clinic at St. Mary’s Hospital.
Nine years ago, Rebekah was born with Pierre Robin Sequence, a combination of birth conditions that can include a small or displaced lower jaw and a tendency for the tongue to fall back in the throat. Since she was two-and-half months old, she has depended on a feeding tube to get the majority of her nutrients.
Her younger brothers, Jacob and Matthew, born in 2004, have a milder version of the sequence.
In 2006, Summer heard about the Feeding Program at Children’s Hospital in Richmond, Va. She and her three children spent eight weeks there receiving daily therapeutic meals and speech and recreational therapy under the direction of Elizabeth Clawson, the behavioral director of the program.
Clawson explained that the children with the sequence “have trouble moving food from the tongue to the teeth and chewing.”
The act of chewing food is “so automatic” for most people, she said. “They think it comes so naturally, but it’s a pretty complicated skill. The tongue has to move. The jaws have to be strong enough, and the cheeks have to support the food on the teeth.”
Children with the Pierre Robin Sequence often don’t learn to chew naturally at a normal developmental stage “because they aren’t taking anything by mouth and learning to chew. They miss the window of development.
“It’s hard to go back to teach that later. And the older they get, the more scared they get.”
Clawson is now working at the Feeding Clinic in Evansville. Rebekah recently had jaw surgery, and she and her mom then traveled to Indiana to continue treatment under Clawson’s care.
While in Evansville, Summer mentioned that Rebekah was in the second grade, the grade when children traditionally receive their First Communion. The mother was concerned that her daughter would not be able to receive the consecrated host because she has difficulty chewing.
Clawson contacted hospital chaplain, Franciscan Sister Jane McConnell, who was able to obtain unconsecrated hosts from the hospital chapel. Those hosts became part of Rebekah’s therapy, allowing her to become familiar with the texture and thickness of the hosts and to learn to chew them.
The mother was also concerned about her daughter missing out on the preparation classes for First Communion at St. Paul Church, so Franciscan Sister Elna Stemann was asked to help. She’s a semi-retired primary school teacher, and during Rebekah’s stay in Evansville they met once a week and reviewed religious education materials from their parish.
Sister Elna said her goal was to make sure Rebekah was “well prepared, and that she didn’t lose out on any instruction” even though she was so far away from her home parish. Summer Grider and Rebekah returned home to Arkansas for First Communion, which was held May 1.
When asked about Rebekah’s progress, Summer said, “I couldn’t even explain it. It’s life changing.
“She’s a second grader, and she wants to be like everyone else. She wanted to come and learn, and now she will be part of the whole family when we go up to Communion.”
Summer’s eyes filled with tears as she said, “She’s a tough cookie. She’s a trooper. I don’t know that I ever thought she would be able to do it. She’s our little miracle.
“Sister Elna worked with her. She taught her her prayers, and she taught her about the Eucharist.”
Then one day, Rebekah was asked, “Do you know what Communion really is?”
Her mother remembered, “I was floored when Rebekah was asked ’what is that?’ and she said ’That’s God.’”
