Episode 6 – Final
The View From Here
A friend once said to me,
“You don’t perform for attention. You perform for impact.”
The comment stopped me cold.
At first, I laughed it off. But the more I thought about it, the more I realized how many of my decisions could be traced back to that simple truth.
Years ago, after the shock of Jack’s diagnosis began to settle and I could think clearly again, I made a decision. I wasn’t going to focus on what Jack couldn’t do. I was going to focus on what he could. What was the one obvious trait that baby Jack already possessed?
Confidence.
I chose to focus on confidence.
I fed it relentlessly.
His self-esteem.
His independence.
His leadership.
Eventually, his language.
Impact?
Yeah. Impact.
Today, seventeen-year-old Jack is a confident backseat driver who occasionally calls me “Karen” when I get dramatic. Recently, during a sensory-overload nightmare at Wild Waves Water Park, he calmly led me out of the chaos.
For a moment, our roles reversed. And as I followed him toward the exit, I couldn’t help but smile.
The little boy I once feared might never find his voice had become someone strong enough to guide me.
“You don’t perform for attention. You perform for impact.”
The comment stopped me cold.
At first, I laughed it off. But the more I thought about it, the more I realized how many of my decisions could be traced back to that simple truth.
Years ago, after the shock of Jack’s diagnosis began to settle and I could think clearly again, I made a decision. I wasn’t going to focus on what Jack couldn’t do. I was going to focus on what he could. What was the one obvious trait that baby Jack already possessed?
Confidence.
I chose to focus on confidence.
I fed it relentlessly.
His self-esteem.
His independence.
His leadership.
Eventually, his language.
Impact?
Yeah. Impact.
Today, seventeen-year-old Jack is a confident backseat driver who occasionally calls me “Karen” when I get dramatic. Recently, during a sensory-overload nightmare at Wild Waves Water Park, he calmly led me out of the chaos.
For a moment, our roles reversed. And as I followed him toward the exit, I couldn’t help but smile.
The little boy I once feared might never find his voice had become someone strong enough to guide me.
The Last Job of the Journey
I’m an optimist, I always have been. My Mom likes to tell this story about when I was young, probably four years old.“Tayshia? What do you want to be when you grow up?” She asked me.
“I want to be a rich lady.” I responded matter-of-factly.
I’m not sure what my theory was behind that four-year old’s declaration, but I know now. Rich is subjective.
The diamond-in-the-rough of that last nightmare job in commercial real estate, was not only to confirm who I am professionally – but where I wanted to go next. My career identity is that of a legal professional. While I have practiced many different areas of law, the legal environment is home to me. I ‘get’ it. It’s where I was raised, and part of my DNA.
Second, the commercial real estate company that I endured only had one client – a hometown big tech company. From that job, I learned that the tech company offered competitive salaries, stock options, incredible medical benefits and robust supportive employment programs which could eventually benefit an adult Jack. I set my sights, I wasn’t stopping until I got that blue badge.
Nine years into this gig, we are not only safe & content – but happy. I am a senior paralegal focused on global human rights, and I work from home. Am I rich? Yes, very. I’ve written this life-long journey from my pink downstairs home office, that faces the street and that I call The Command Center.
I don’t have a dress code and haven’t worn nylons in decades. I have my trusty Scottie Dog, Angus, asleep in his bed next to me – Jack upstairs in his nautical bedroom with all of his electronics and stinky teen boy smell. My Mom is tending to her flowerpots out on the back deck that I had built last year. Our home is warm & inviting, and ours. Is it huge? No. But I am rich in so many ways.
Doom-scrolling
It was 4 o’clock in the morning and I was doom-scrolling. No matter how safe & content they are, parents of kids with disabilities don’t sleep. While Jack started regaining his speech at age 5, by saying one word, two words together by age 7 – he will still need life-long supports as an adult. His ‘speech’ is also a huge parent fail of mine.He wasn’t deaf.
He was non-verbal.
When he started talking again, he talked just like me. And, I’m trash-talker. I am not proud to have to admit here, but I have a relatively filthy vocabulary – and now so does he.
Four a.m. is usually the time that us parents research resources for our kids. Because sleep is rarely an option. I stumbled across an announcement looking for parent advocate applicants for the Developmental Disability Council. A Governor appointed seat with the state which is federally mandated and funded under the Americans with Disabilities Act. During the interview, one of the self-advocates asked me why I applied for the seat – and I told him the dooms-scrolling story. He was taken aback, as I am sure that most applicants say something like they ‘want to serve – this is my passion’. Me? I wanted to sleep at night. I figured that if I could get on the inside and help change policy, advocate directly to the legislature for Jack – I could find some peace – and therefore, some sleep. In the end, the three years that I served on the Council enriched my life tremendously and will always benefit Jack indirectly.
Advocacy is my passion, it’s how I became Jack’s Mom. It started so many years ago, in that long line at the Post Office – embarrassing that cute young man – and agreeing to volunteer as an advocate for foster care reform. Again, I am rich in so many ways.
We Both Did the Work
I am assuming that most parents do this too, not just parents like me. That while we are doing the grind, all the hard work – all the late nights – juggling & balancing – we may not realize that our kids are doing the work too. Observing, taking note, feeling the vibes. Learning the lessons, trying to please. Being brave.Jack matched my efforts every step along the way. And still does….
Flashback – Facebook post from 2024
It doesn’t happen as often anymore, but when it does, it hits me like a flashback — sudden, sharp, and powerful. One second I’m standing in the foyer waiting for Jack to come downstairs for our nightly drive, and the next I’m pulled straight back to when he was five.Non verbal.
Frustrated.
Hurting himself because he had no other way to communicate the storm inside him.
Not fully potty trained.
Unable to do any self care.
And me — already preparing myself to be his caregiver forever.
Ready to do it. Ready to be whatever he needed.
But, I was scared.
Then the present snapped back into focus.
I heard his bedroom door click shut.
The lights flip off.
His footsteps on the stairs – that teenage saunter that says, “I’m here, but I’m not rushing.”
And then he appeared.
Freshly showered.
Smelling like the Old Spice Swagger set I bought him for Christmas.
Hair brushed.
Clothes chosen on his own.
A young man who has fought for every skill, every milestone, every inch of independence.
I must’ve had a weird look on my face — because he leaned in close and whispered:
“Ready?”
But it wasn’t really “ready?”
It was, “Are you okay?”
And all I could muster up to say was:
“I’m ready. I’ll always be ready.”
Because I am.
For him.
For the journey.
For the moments that remind me how far we’ve traveled from that frustrated little boy and that scared mom who didn’t know what the future would look like.
He is strong & brave.
And I am strong & brave, because of him.
Some nights, the victories are loud.
Tonight, it was just a quiet foyer, a teenage boy who smells like Swagger, and a mother who realized – again – that miracles don’t always arrive in big moments.
Sometimes they walk down the stairs.
