By Maureen Gilmer, IU Health senior journalist, firstname.lastname@example.org
“God could not be everywhere, and therefore he made mothers.” – Rudyard Kipling
On this Mother’s Day, we wanted to check in with some of our Riley moms whose children have been featured on our social media pages over the past year.
We asked them a simple question: What do you wish for your child? We were moved by their responses.
Kaila Kesner, son Deacan, 5. Deacan has cystic fibrosis and visits Riley Hospital for Children frequently for “tune-ups” to clear out his lungs. We last saw Deacan in December when he was nearing the end of a two-week stay, his sixth of the year.
“My wish for my son is to live a happy and full life despite his illness,” Kaila said. “Everyone has trials in life, and this is his. He is learning to navigate life and having to make adjustments for his treatments and medications, but even as a 5-year-old, he is taking it in stride. I want him to feel normal and accepted by others despite having to have treatments and medications and extra attention because of his CF.”
Asked how her family would spend the day, Kaila said it’s a toss-up.
“I might be in the hospital with a new baby! If not, then I’ll be home enjoying the day with my family making cookies and snuggling.”
Kaila and her husband, Chris, both serving in the U.S. Air Force, are expecting their fifth child any day.
Tremesha Preddie, sons Elliot, 12, and Carter, 4. Both of Terrence and Tremesha Preddie’s sons suffer from sickle cell disease, a blood disorder that causes chronic pain, infections and organ damage.
Tremesha shares how hard it is to watch her children struggle with pain and be treated differently. “You grow skilled at putting on a brave face, holding their hands when they’re scared, and finding creative ways to make them smile when their bodies are filled with extreme pain. It’s heartbreaking.”
So this Mother’s Day, she said, if she had one wish for them, “it would be a life free from all the burdens of sickle cell and free of limitations. No more pain crises, no more chronic blood transfusions, no more not letting them go to public pools in the summer because the cold water would cause them to need hospitalization to alleviate the pain, no more brain scans, no more iron overload, no more daily prescriptions, and no more invasive surgeries.
“I would wish for them to live their lives to the absolute fullest, where the only limitation is how big they can dream!”
Ashley Deaver, daughter Sydney, 17 months. When she was just two months old, genetic testing revealed that little Sydney’s heart was failing. She was diagnosed with Noonan syndrome, a disorder that can cause heart defects and other developmental issues. Sydney received a new heart on May 7 of last year when she was five months old, so she and her parents, Ashley and David, spent Mother’s Day 2019 at Riley Hospital.
This year, the family will be home, socially distancing from friends and family due to the coronavirus but relishing their time together after a rough 2019.
If the rain stays away, little Sydney might be spotted at the wheel of her miniature red Maserati sports car, a gift from her parents when she came home last year.
Ashley’s wish for her little girl is sweet and profound.
“I wish for angels to guide Sydney through this life and bless her with peace and light, so she may live and grow with kindness and grace.”
Brittany Wahr, daughter Kennedy, who will be 2 this month. Kennedy and her twin sister Kinsley were born 15 weeks early, each weighing 1 pound, 8 ounces. Kinsley did not survive, and Kennedy spent the next 11-plus months at Riley, suffering from a multitude of health problems, including lung disease, necrotizing enterocolitis, fluid accumulation in her brain and multiple infections.
After setting several goals for getting their little girl home – Thanksgiving, Christmas, Valentine’s Day – and watching those days come and go from Kennedy’s hospital room, Brittany had her sights on one more – May 15, 2019 – Kennedy’s first birthday.
She made it home with 20 days to spare, discharged from Riley on April 25, 2019. As Brittany looks forward to celebrating her second Mother’s Day with her little girl, she shared her wish for Kennedy.
“My wish is that she grows up knowing how much she is loved and cared for and gets over her lung disease and that she grows up to be the strong little girl I have seen her be throughout all her challenges.”
Amie Hastings, son Gianni (Teddy) Gomez, 8. It’s been eight long months since the second-grader has been inpatient at Riley, waiting for a heart transplant. He has celebrated major holidays with his friends on the cardiac floor and last month celebrated his birthday in the hospital.
It’s not easy for mom or son, but both try to keep up a brave face.
“We are doing everything possible to stay positive and help Gianni stay positive,” Amie said, adding that her son is ready to get home and “move forward with his life.”
“My wish is for him to be happy and healthy,” she said. “I am so grateful for all the nurses and staff on the unit. Really, only their love for the kids and the families has made all of this bearable.”
Ashley Riddle, son Tyler, 16 months. Ashley and Shane Riddle didn’t think they could get pregnant, but Tyler entered their world in January 2019, several months premature and weighing just 1 pound, 12 ounces. After 101 days at Riley, Tyler came home one year ago this month.
Today, Ashley said, their son is doing great. He’s starting to cruise around furniture and is learning to talk. She expects the family to celebrate Mother’s Day with a small cookout.
Ashley, a Riley kid herself as a toddler, said her wish for her son is simple: “I want him to just be happy and know that he can accomplish big things, and he’s loved unconditionally.”
Tarissa Meredith, daughter Kali, 5 months. Tarissa is celebrating her first Mother’s Day with her daughter, who was born 3½ months early. Kali was finally discharged from Riley last weekend to go home with her mom and dad, Kosh Chamberlain.
“I feel honored that God thinks I’m strong enough to be Kali’s mom,” Tarissa said, as she and her daughter sported matching tops that said “Our First Mother’s Day.”
“This is so special that we get to spend this Mother’s Day in our own home. I don’t want any other gifts, I’m just happy my baby girl is with me.”
Her wish for her child? “That Kali knows the world is hers and her options for success are limitless because she is a true miracle. Her life has meaning and purpose.”
Happy Mother’s Day to moms everywhere.