Meet Ryan Bailey
2016 SAFFE Day Ambassador
By Colleen Bailey
Brent and I were approaching our 21st wedding anniversary when our first and only child was born. There were no pregnancy complications, but there were multiple challenges after his delivery. A heart defect, jaundice, feeding tube, hearing difficulties and this term we knew nothing about……Down syndrome. Those challenges erased all the joy we felt when we held each other in the Pacific waters of Hawaii months earlier as giddy expectant parents.
Our story is about embracing the challenges of life. Sometimes it feels like we’re being pulled out into the open sea without a lifeboat. For instance, when we have to face discussions and decisions about Ryan’s future. But sometimes it feels like we are playfully splashing about in warm turquoise tropical waters without a care in the world. An example is when we are driving in the car and Ryan asks to “touch the wind”. He extends all four limbs straight out while swaying to the rhythm of the swooshing wind.
The diagnosis of Down syndrome was a gift but it did not feel like a gift at the time. I believe God heroically conveyed a message of hope through the sweet eyes of a 4-week-old infant when I felt like a failure as a new mom. My husband and I are incredibly thankful for the all the heroes in Ryan’s life since that time. And Ryan, of course, is our hero. To be asked nearly twelve years later to tell our story about a little guy who is called an everyday hero is humbling.
Ryan is our amazing child who was born with three copies of the 21st chromosome. Because we are talking about SAFFE Day, I’d like to share three memorable experiences with East Texas fire departments. Our first was when Ryan was about 8-years-old. We visited Longview Fire Station #4. They agreed to let Ryan take photos for our A to Z In My City Children’s Photo Book series. Ryan had such a great time he refused to leave and took off running within the station. The fire department crew was great. They chased Ryan from one room to another without scaring him. Ryan might have thought it was a game of tag. It took a call to Daddy to talk him out of the corner of a back room. Daddy stayed on the phone the entire time we marched out of the station. You see, Ryan told EVERYONE they had to leave too! “Come on, march with Ryan. Like this. Let’s ALL march to my red car!” And for the next couple years that was our normal. A call to Daddy, whoever was with us became part of Ryan’s parade and we marched to the car with Daddy talking over the speaker phone while Mommy carried it for him to hear. God bless those firefighters!
Our 2nd experience was in 2014. We participated with a homeschool group who had a fire safety demonstration. This time the firefighters were dressed up in full gear. And this time my child was not a happy camper. To save Ryan’s dignity we’ll just say it scared him a lot! He wanted to leave without any call to Daddy’s office. I suppose these emergency workers do look pretty scary to a young child or a child who has special abilities.
Our 3rd experience was one of the filming days for SAFFE Day. Ryan was safely surrounded by a large group of firefighters in a bay at Kilgore’s Central Fire Station on a chilly autumn morning before sunrise. The firefighters stood silently with hands folded observing a little boy struggling with some of his words in the speech. The crew smiled when Ryan proudly sang off tune about the 50 states. They didn’t flinch when he proudly stepped back into place to finish his speech. Ryan brings out the best in others.
It’s hard to describe the emotion I felt when I read that people with Down syndrome are “genius at bringing out the best in others.” Can a person ache with joy? That’s the best I can come up with to articulate the experience. It was definitely an ache but a good one. An “ah ha” moment. And it’s been proven over and over again in the life of his father and in mine and in every person willing to give him a chance. For instance:
- Grown men hugging in public who don’t know each other because Ryan insists they do it is hilarious comic relief!
- Parents who are giving a serious thought to adoption of a child with Down syndrome because they’ve interacted with our child is a God thing.
- An elderly woman who sits up in her hospice bed because our boy has greeted her with “Hello your majesty” is priceless.
- A city council who still addresses our budding ambassador as “Mayor” because they gave him 8 plus minutes with the gavel provides hope to the differently abled community.
- A 7th degree black-belt who finds a way to teach Taekwondo to our special needs son, who processes every thought out loud during class, because he is determined to help him succeed is inspiring beyond belief.
- A cowgirl who responds to our little wanna-be cowboy hanging over the rodeo stands and then opens doors for him to recite the Pledge of Allegiance before a crowd of 4,000 plus year after year is inclusion at its finest.
- A ten-year-old girl who reaches out to our once PeeWee Show Choir singer and raises money for the local Down syndrome group because of their friendship by rallying her NEW school to bring in their dimes is generosity at its purest.
- A librarian who saw Ryan’s interest in books at a young age and encouraged his love of reading along with an older boy who read to him passed on their love of learning.
- Volunteers who commit their Saturday mornings so our son can play Little League Challenger baseball provides blessed diversion to the limitations in his life.
- Therapists who have worked with him since birth providing over 1,500 sessions to help him hold up his head, use his hands together instead of separately, walk and speak are examples of steadfast perseverance.
- Home-schooling friends who play with and then wisely ignore his frustrations are answers to prayer for wholesome friendship.
- Local media who have interviewed Ryan over the years including printing his interview of a 99-year-old author on the front page of a local newspaper have communicated what the differently abled community can do.
- Unity is expressed when churches, with different beliefs, invite Ryan to recite Psalm 23.
- The families in East Texas who live with Down syndrome and share their experiences with us make a lasting investment in his development.
- The countless friends and family who have remained by our side in prayer and action are our tapestry of comfort.
- A diagnostician who can laugh during a meeting because our impatient son interrupts her, “Excuse me ma’am. You are talking too long. I need you to wrap it up. You are wasting my play time!” is acceptance at its best.
Ryan’s prayer in our red car on the way to Central Station for his SAFFE Day speech started “God we are waiting for the sunrise. And God I want to twinkle like a star. And God your sunrise is pink like strawberry ice cream. But God it is black now like chocolate ice cream…..”
After Ryan’s speech that same day, I heard the story about Jared, who also has Down syndrome, whose brother is a Kilgore firefighter. Jared had a huge impact on Chief Bellows and the Kilgore Fire Department. As a result of that impact we now have SAFFE Day. We hope fire departments around the country, which Ryan proudly sang off key naming alphabetically, will consider SAFFE Days for their communities.
Ryan and Jared and people like them are truly genius at bringing out the best in others. They connect with others in profound ways helping people become better, become more compassionate, become more creative, become more…..well…..heroic.