Ari's Return: Battling & Beating a Life-threatening Illness
If you could have one super power what would it be and why? It’s a common question in pop culture polls. Children and adults alike revel in the banter of suppositions and what ifs.
The crux of superhero tales is that the individual doesn’t get to pick their power. It sort of picks them. They are just who they are. There may be people in your life who are like superheroes to you even though they may not have x-ray vision or shoot laser beams from their fingertips. You may consider them super for who they are and the effect they have on the people and world around them.
Three-year old Ari Graves is one of those every day superheroes. He has slayed dragons very few of us will ever face. He will likely slay more throughout his time on this planet. The name Ari is defined as fearless or brave. In Hebrew it means lion. In Scandinavian it means fast flying one. In Albanian it means bear. And, in Greek it means superior, best of thinkers. He is a small boy with great might and an aura like an intergalactic tractor beam. He draws you in, holds your attention and makes the world a better place all in a single smile!
Sean and Dorothy Graves did not know their son Ari was born with Down syndrome. He came into the world a month earlier than his due date and 15 minutes after mom, Dorothy’s water broke. They did not have time to get to the hospital. A doula delivered Ari on their bedroom floor with EMTs close at hand. Other than all of that excitement, Dorothy says, “Nothing seemed unusual.”
Since Ari was premature, he was placed in the UAMS Neonatal Intensive Care Unit, then transferred to Arkansas Children’s Hospital. After 17 days, he was diagnosed with Trisomy 21-Down syndrome. Dorothy explains, “There’s an extra copy of chromosome 21 which throws stuff out of balance.”
For a full month, Ari received care on coordinating breathing and swallowing. “He was on a breathing tube for a very long time. He also had a small heart defect, but it resolved on its own,” Dorothy says.
Ari was in good health for the first year and a half of his life despite swallowing difficulty and challenging respiratory infections. Children with Down syndrome have lower ears, so they do not drain as typical ears do. Tubes were placed in Ari’s ears early in order to help minimize these infections.
He then had the relatively common surgery to remove his adenoids: “He was crashing 36 hours later.,” Dorothy says. “We took him to the ER. He had sepsis and heart failure. He was put on a ventilator for 10 days. There was no clear indication why it happened or a clear prognosis,” Dorothy recalls.
Ari spent 28 days in Arkansas Children’s Hospital ICU. (See the Graves' 8 Tips for Hospital Stays.)
After returning home, Ari’s parents had to wean him off of the sedatives used in the hospital to make his ventilation possible. Weaning slowly prevented him from going through withdrawals. He also received occupational and physical therapies. “It took a lot of recovery to gain his strength and abilities back. It also took a couple of weeks for him to get his voice back,” Dorothy says.
Ari was walking prior to his illness. Dorothy says, “Then it was ‘Can he sit up again?’” Since then, he has made many strides literally and figuratively.
Last year, Ari was scheduled to be a model in the Easter Seals annual Fashion Event. Unfortunately, he was sidelined by the hospitalization. Not the case though in 2016! Illness didn’t stop the little superhero. Ari returned to the stage for this spring’s event, wowing the crowd and charming cheering patrons.
Looking back Dorothy shares, “There are all of those scary moments and then you’re on the other side. You see that your child makes it through. That feeling of being able to hold him again and the thoughts of the mountain you were able to climb. I feel pure gratefulness for every day, for my family and for his health!”
Now that Ari is healthy, the question is “what does the future hold?” Ari’s dad Sean says, “I know there’ll be ups and downs. Ari is on a delayed schedule, a year or more behind, but he is close to normal in other areas. You have to constantly build each other up. There are great days and you hope for more of those and the strength to get through the others.”
Ari’s big sister Rowan adores her brother and sings him the classics—Itsy Bitsy Spider, Twinkle Twinkle Little Star, and Wheels on the Bus. “He loves it,” says Sean. Though Rowan sometimes does gets frustrated: “She wants to know when Ari can do stuff. She loves playing with him and explains to her friends what he can and can’t do right now.”
But Ari is capable of so much, and recently had a mountain of an adventure. Dorothy says of a family retreat at Camp Mitchell on Petit Jean Mountain: “It was our first opportunity to see Ari integrated in a playful and open, semi-structured environment with other kids over a long period of time. It was so great to see him interacting with the other kids or just going off by himself to play with toys, but he was doing so well inside and outside, and the other kids and families love him,” Dorothy shares. “It was truly special!”