Acknowledge and appreciate the present. Nothing more divine than you right here in the present. Living in the present.
You’re not promised tomorrow. Appreciate the moment and the people in the moment with you. You know, we hear these phrases and another similar one (you don’t appreciate what you have until it’s gone)....
Lindsey and I tried to live everyday with Austin as if his tomorrow wouldn’t come. We would talk about ways we could live in the present while still looking towards our future, especially with our present at that time looking a lot different than most.
I used to close my eyes to visualize the moments we shared to forever sear them in my memory.
I would squeeze his hand and whisper in his ear these phrases; AJ, you’re the sweetest soul and the strongest boy in the world…..you are so loved and I’ll fight for you till the very end. I always reminded him he was the cutest kid in the world with the brightest smile and best laugh.
I would lay in the bed with him just to hold his hand tight to always make sure he knew I was always with him.
I can still smell his sweet smell and feel his gentle but strong squeeze of my hand.
The moments that amazed me the most were when I would finally leave his room and let go of his little hand, it never failed that he would squeeze tighter and cut his eyes at me as if to say where the heck do you think you’re going, Dad.
Those moments gave me hope but also created more sadness to think he might know and understand his reality.
We would bring Sullivan in his room for our version of our family time.
The reality was, most of Sullivan’s life with his older involved sacrifice. Sacrifice from being able to go where he wanted and do what he wanted.
Sacrifice from not being with both of his parents at many of life's events. One parent always stayed behind to care for Austin in the last few years of his life, many times that was Lindsey.
Character is not a product of circumstances, it’s the thing that survives it!
"When life is Sweet, say Thank you and celebrate. When life is bitter, say, Thank you and grow."
If you don’t have the perspective and mental toughness you won’t survive the tough moments in life. Mental toughness is a talent. It comes in many forms.
I wasn't always sad or thinking of his death, but I was always aware of it. Some days that awareness was faint and in the background of my every day, and other days it is front and present and demanding attention.
We sometimes made decisions about things he could or couldn't do based on medical expertise, but also based on what we thought was best and would increase his quality of life.
Quality of life is especially important when you care for a child with a medically fragile condition. Will he be able to do these things and enjoy them and does it provide a reward for him vs. the risks.
We wanted to make sure we gave Austin as normal and yet as full of a life as we could, whether that life lasted 9 years, 10 years or hopefully even 30 years.
Lindsey and I had big career goals and family dreams. Those dreams and goals had to be set aside to put Austin 1st. Even the plan of having a third child had to be put on hold and reconsidered.
This journey of life is between the goal/the dream and aspirations, we waste so many experiences when they don’t come in the form of the way we expect it to happen and when things don’t go the way we want it to go.
You get redirected and your dreams being deferred and you’re going through something you didn’t plan and there might just be a better brighter tomorrow at the end of the storm.
Reasons don’t count, people use reasons all the time why they can’t accomplish something.
Reasons are like excuses.
Results happen by commitment.
People respect results.
My life is led by my faith. Faith in substance in things hope for and evidence in things not seen. I was blessed to have a Mom and Dad who were tough minded with a tighten your boots straps up mentality, but with the most loving and loyal ways.
I used to call my Dad for advice on all things, from life to my career. He was one of the most objective humans on the planet. Towards the middle of Austin’s life when the 24/7 grind we were managing became so hard that hope seemed to disappear.
They say you can always find a seed of good or light in the darkest days.
I would ask my Dad a simple question, how do you give hope to your wife and family who are struggling to maintain and simply keep our heads above water with the other parts of our lives.
See, every day for us was like Groundhog Day the movie, but in the worst way possible. Austin was on a 24/7 medicine and feeding cycle with over five different meds, sometimes more depending on his needs. Hygiene care was a big tasks in itself. Doctors visits, therapy appointments, home care services, many other daily and monthly tasks to keep Austin at his very best.
The amount of supplies we would receive monthly would fill up multiple walk-in closets, even our pantry. We basically had a hospital room in our house for him. Monthly documentation requirements, placing supply and food orders were also weekly/monthly tasks.
Weekly trach changes (pictured right). I could do those in my sleep but only Lindsey and I were trained to do it.
We used to tell people we were like robots; you just plug us in to recharge us and we do it all over again.
From our family goals to our career ambitions, all of it had to be put to the side as we navigated a course that was uncharted. That was the way one of Austin’s neurologists (yes, he had multiple) explained it, Austin charts his own course. His rare disease and overall condition were so ultra rare that he had his on roadmap and no one had many solutions for his many challenges.
Sometimes my emotions were in check and other times anger or deep sadness were part of the conversations Lindsey and I or my family would have about Austin's situation and the future.
I never expected to be a Dad nor expected to have a loving wife who would have to live every day like our child was dying but in fact, he was…...and we did.
It made us better humans for it, even though the struggles and pain we've endured have been unreal at times.
Even through the darkest days of being Austin's parents, we found joy in the struggle through helping others with the creation of the Austin 1st Foundation that we co-founded in 2019.
We are blessed to receive a lot of support through the journey.
It is only with gratitude that life becomes rich.
John 13:7 Jesus replied, “You do not realize now what I am doing, but later you will understand.”
Austin 1st Foundation is a 501 (c)(3) Public Charity - See the impact we make and support our mission to be Champions for Rare Disease by raising awareness and research dollars for families in Alabama & beyond.