The Outcome

The moment of truth came and went last night.  I stood up in front of 500 people and shared an intimate, detailed account of my boy’s different paths to the same destination.  It was really a tribute to the kind of institution that Trinity is and an expression of gratitude to their contribution to both of my boys.  It was emotional, but I didn’t do my ugly cry and I was for the most part composed.   Nothing could have prepared me for a standing ovation – that was humbling.   Below is the speech given last night.

Good evening.   When I was asked to speak tonight, I was hesitant.   I am a writer, not a public speaker.   My gift is to hide behind the pages and allow others to read my words. Standing in front of a large crowd of virtual strangers is vulnerability in its purest form, but the story I have to tell can only come from my lips.   This is the story of two boys…..my boys and their different paths that led them to the same destination.

Rooted in Louisville, I navigated my education through Sacred Heart Model School and then on to Sacred Heart Academy.   When I married Brian, Trinity class of 1987, I already had a vision of our children enveloped in the Catholic school system, as they helped give both of us a solid foundation.

What I wasn’t prepared for was that my dream would look different than what I had imagined.   Our oldest son, Bailey, was born with Down syndrome.   Nothing could have prepared us for this twist in our path.   While grappling in a mourning process, I was looking for a blueprint – a guide – something that would tell me how to do this.  It was a blueprint that I would have create for myself.  I forged ahead – similar to a bull in a china shop – with the intent that I would not be silenced.  His life was valuable.  It was a constant battle to force educators, community leaders, and other individuals to see what we saw – a vital human being who simply wanted to find his place in the world.  I am a passionate advocate that struggles with the word NO.

Four and a half years later, we were blessed with our second child, Bryce.   Growing up with a special needs brother has certainly been a challenge for him.  Despite a parent’s best efforts, even without a special needs child in the picture, balancing a fair and even playing field with our kids is difficult at best.  Bailey always required more of us – more time, energy, creativity, you name it – we did it.   Bryce, who is currently a junior here at Trinity, encompasses compassion, sensitivity, and a tremendous willingness to educate others who might not understand the fundamentals of Down syndrome.    He treats his brother no differently because of his disability.   They are a typical set of siblings that bicker, annoy, and push each other’s buttons, but always have each other’s backs.

When Bailey was ten years old, I reached out to Dan and Rob, who at the time were virtual strangers, with a concept of a program that would welcome Down syndrome boys into the brotherhood while providing them with a quality education.  The research was solid, as there was an already an existing program in Nashville, Tennessee.  And while all things pointed in a positive direction, the funding became the roadblock.   I always believe that God’s timing is perfect, so there is always hope that one day the vision of young men like Bailey will benefit from the deep rooted connection of Trinity High School.   What I didn’t expect, was the offer of Bailey to participate with the freshman football team as a manager. At the time, Bailey was a freshman at Pitt Academy after attending Breckinridge-Franklin for elementary school. Coach Magre opened his heart to giving Bailey a chance to be with typical boys his own age.   Effortlessly, Bailey was integrated into the team.  The boys treated him like one of their own and it was a year of firsts.  And while Bailey thrived it was that moment that helped me begin to cut the cord – realizing that even he wouldn’t need my constant presence.  It took baby steps.  I would park right next to the practice field, then gradually I moved to the parking lot across the street, and by the end of the season, I was allowing him to walk back to the Marshall center with the team, and ride home with his cousin, Caden, who at the time, was a senior. It was a painstaking process of letting go and getting out of the way for Bailey to spread his wings.  I learned to put my trust in God’s plan because HIS ideas are ALWAYS better than mine.

When it came time to choose a high school for Bryce, we always encouraged him to tour the other Catholic boy’s schools – with a clear understanding that if he went to that other rival school, we would support him, but would not be filling our wardrobe with their spirit wear.   After he shadowed and, of course, ate the food in the cafeteria, which apparently is a tremendous improvement over grade school fare, he made no other visits and committed to four years at Trinity. He has flourished and is navigating his own path. Smart, mature, and wiser than most adults, Bryce is one of my greatest teachers. We couldn’t be more proud of the man that he is becoming.

After graduation from high school, Bailey attended Ahrens Vocational School.   The goal with this program is to prepare individuals with disabilities to be productive members of the workforce and to integrate them into the community.    I wanted Bailey to have a 3-5 day a week position, which Ahrens could not seem to secure, so my advocating instincts kicked in once again and I approached Rob and Dan about the possibility of Bailey working at Trinity.

My expectations were realistic and my belief has always been that I will never know the answer unless I ask the question.   Their willingness to take time to meet with me and brainstorm was just another example of the heart of this school.   As we chatted, I had mentioned a possibility of the cafeteria and at that moment, Mark Debonis, who runs FLICK Dining Services, walked into the room.  That my friends, is a Godincidence.    He joined our conversation, he expressed his willingness to meet Bailey, and he was open about his inexperience with working with anyone with Down syndrome.  I was overwhelmed when I left – full of hope and relief.   Bailey was hired last September working three days a week.   Not long after, he was asked to work five days a week.  Our beautiful son now works at this wonderful school surrounded by people who love and accept him for who he is.   He is not defined by his disability.  When he graduated from Ahrens in May, his boss, coworkers, Rob and his wife Kathy, and Dan, joined us as we watched him complete yet another milestone.   Trinity is more than a brick building full of classrooms.  It is home. It is a haven.  It is filled with passionate teachers and staff that carry out the mission of creating men of character and men of faith.  Simply put, it is family.

Lastly, let me share my experience of Bailey’s first day of work.  There he stood in his crisp, new pants and tailored chef’s coat eagerly looking at the clock.    This pivotal moment was slightly marred by the doom and gloom scenarios that danced in my head.  A common occurrence when raising any child, but more heightened when raising a child with special needs.  I was teetering on the brink of “what ifs”.  What if he can’t do the work?  What if this isn’t a good fit?   All the while knowing that if I turned this over to God, all would be well.   As we drove to his new job, I could only wonder if he really understood all the work, sleepless nights, and the weary battles that got us to this moment.    I watched him play with his fingers, nervously looking out the window, as we pulled up to his new place of employment.    I paused as he unhooked his seatbelt and gave me one of his magnetic smiles.   He leaned over to kiss me and I tell him to have a good day.   Tears well up as I watch him walk into this sanctuary.  This place that saw beyond his disability.  This place that I had dreamed for him since the day he was born.   All the fear, anxiety, and anticipation that I had experienced for the last twenty years, melted away.     I waited until the door closed behind him and exhaled.  I felt like I had literally been holding my breath all these years.  I allowed the tears to flow freely as I knew he was home.   The words that clutched my heart after his first day of work had concluded were, “I am part of the brotherhood now!”   While on different paths, my boys arrived at the same destination.

We aren’t that different from Bailey.   We are all looking for a place to fit, a niche to fill, and space to occupy.  Seeking acceptance in a world that oozes intolerance is a challenge.  But then, there is Trinity who has risen to the call, conquered that challenge, and still strives to be that foundation where acceptance and integrity reign supreme.   I am forever grateful to Trinity High School and their presence in our life.

 

 

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