‘Love is patient’ Photo of brothers wins contest
For Tammy Hillis the picture of love is one of her two young sons, one rendered unable to speak by his disability, the other never giving up hope that his brother will one day walk, talk and play with him.
Hillis was the winner of the Batesville Daily Guard’s 2014 Valentine’s Day contest, earning a dinner for two from Josie’s Steakhouse, a dozen red roses from Signature Baskets, a year’s online subscription to the Guard, a gold-dipped red rose from Thompson’s Jewelry, box of Russell Stover chocolates from Carlee’s Hallmark and a dozen cupcakes from Natalie’s Cafe.
Hillis submitted a photo of her sons, 4-year-old Caden and 5-year-old Carson, that she had taken in the backyard last spring after getting a new camera. The photo has received more than 350 “likes” on the Guard’s Facebook page to win the contest.
Caden was born with 1p36 deletion syndrome, an extremely rare genetic condition.
He has chronic seizures, does not eat by mouth but rather is fed through a tube button and also has a rare heart defect called left ventricular non compaction, or LVNC. It is non-repairable and if something were to happen he would need a heart transplant.
Hillis said they have to change Caden’s tube button for him. “The first time I did it I was trembling, but it got easier,” she said.
Caden is unable to walk and uses a wheelchair. He attends Stars Academy (formerly Miracle Kids Academy) and gets physical, occupational and speech therapy, then takes additional OT from Keith Barley.
Caden was put on life support when he was born; a doctor prepared the Hillises for the possibility that Caden would not survive. So they did what they knew best — they prayed and put Caden’s life in God’s hands. The next day, they received a miracle. Caden was able to come off life support. But their challenges were just beginning.
“One of us had to stay home when Caden was born (for round-the-clock care) so Bartley (her husband) chose to stay home,” said Hillis, who works as a deputy clerk/voter registration coordinator at the Independence County Clerk’s Office. (Bartley has recently received his master’s degree in human services online.)
Coping with Caden’s birth defect has not been easy, but the Hillises have learned to not take things for granted. “Little things mean so much more,” said Hillis, who has two other children, Kaitlynn Holland, 13, and Cody Holland, 11.
So when she submitted the photo of the boys to the Guard’s contest, she added the tagline: “Love is patient, understanding, and unspeakable.”
As she explained, “We have to be patient with Caden; we want him to walk and talk. Our kids are understanding, and with Caden’s condition we have to be understanding. And love is unspeakable. … He can’t talk, but you can see a love in him, shining in his eyes. He almost loves through his eyes.”
And even at a young age, Carson loves his brother back and shows patience and understanding as well as any adult. “He prays every night and at mealtimes, ‘Please let Caden walk and talk and play with me.’ They’re so close. Caden just lays there and Carson is content with that, playing beside him,” Hillis said.
Hillis said there are only four other children in Arkansas with 1p36 deletion syndrome and since Caden’s diagnosis she and Bartley, have done quite bit of research since Caden’s diagnosis and have even had to educate doctors about 1p36 (pronounced one P three six). She also said she is excited about a conference they plan to attend later this year in Cincinnati and connect with other families dealing with 1p36 deletion syndrome.
Hillis said the older Caden gets, “the more we’re understanding what he’s wanting or needing.” When he cries or moves his arms, the more able they are to interpret the gestures.
When Caden was 2, Hillis found out about an opportunity to receive an iPad that would include apps for special-needs children.
Apps for Children with Special Needs ran the 50 iPads, 50 States, 50 Children with special needs campaign. The goal was to give one iPad to one special-needs child in every state; recipients were chosen from submitted essays.
Caden Hillis, 2, was selected to be the recipient for Arkansas and in November 2011, the family received their iPad.
“He loves music,” Hillis said. “He’s even starting to smile when you put different music on there — he reacts more to music really, than anything else.”
Caden is not able to interact a whole lot, however. “He doesn’t see things and just points at them,” Hillis said. When he does swipe it Hillis said they are not sure if he’s doing it on purpose. “He has a lot of involuntary movements with his hands.” And, Carson doesn’t mind hanging out with his brother and swiping the screen.
“The goal is to use it as a communication tool; we’re not giving up — we’re just not there yet.”
She said he also has a green stuffed tech dog named Scout that talks and sings to Caden and even says his name. “At night it will yawn and say, ‘Good night, Caden.’ We’re on our third one — we’ve even got one at his grandmother’s house.”
She said they will never give up hope, and even though Caden can’t talk he teaches them so much. “Even though you may not be able to speak the words ‘I love you,’ you can show it and have unspeakable love.”