06/11/2026
Some days I share the victories. Some days I share the milestones. Some days I share the smiles, the therapy sessions, the progress, and all the things Bennett has overcome.
But what I don’t share very often is how hard this journey has really been behind the scenes.
The truth is, there have been so many moments where I have felt completely defeated. So many phone calls that never got returned. So many appointments that took months to get. So many referrals that got lost. So many times we’ve been told to wait when Bennett simply doesn’t have time to wait.
Children like Bennett need early intervention, consistent care, and timely treatment. Every delay matters. Every missed opportunity matters. Every setback can affect progress that took months or years to achieve.
I don’t talk about it much because I try to stay positive. I try to focus on what we can control. I try to protect Bennett’s story while also advocating for him. But if I’m being completely transparent, Louisiana’s healthcare system has let us down more times than I can count.
We’ve fought for therapies. We’ve fought for equipment. We’ve fought for appointments. We’ve fought for specialists. We’ve fought for answers.
And when we couldn’t find the care Bennett needed here, we packed our bags and traveled out of state in search of better opportunities for him. We’ve spent countless hours on the road, taken time away from home, rearranged our lives, and carried the financial and emotional burden that comes with seeking care elsewhere—all because we want Bennett to have access to the best chance at success.
As parents, we shouldn’t have to leave our state to find the resources, specialists, and support our child needs. Yet time and time again, that’s exactly what we’ve had to do.
There have been moments where I’ve watched Bennett work so hard to gain a skill, only for delays in care, equipment, or treatment to put him at risk of losing ground. As a parent, there is no feeling quite like knowing your child is capable of more but is being held back by barriers that shouldn’t exist.
People often see the strong side of me. They see me advocating. They see me researching. They see me showing up to appointments and pushing forward.
What they don’t see are the nights I cry after Bennett goes to bed. The frustration. The exhaustion. The fear. The anger. The constant worry that time is slipping away while we wait for approvals, appointments, and services that should be readily available.
Bennett has already faced more surgeries, therapies, procedures, and challenges than most people will face in a lifetime. Yet he continues to show up with a smile and a determination that inspires me every single day.
That’s why it hurts so much when the systems that are supposed to help him become another obstacle he has to overcome.
I don’t share this for sympathy. I share it because this is our reality. This is the side of disability parenting that often stays hidden. The endless paperwork, insurance battles, waitlists, denials, delays, travel, sacrifices, and disappointments that happen long before anyone sees the progress photos online.
Lately, I’ve been carrying a lot of hurt about it. Watching your child fight so hard while feeling like you’re constantly fighting the very systems designed to help them is exhausting. Some days it feels like we’re taking one step forward and two steps back.
But one thing that will never change is that we will keep fighting for him.
We’ll keep traveling. We’ll keep asking questions. We’ll keep advocating. We’ll keep knocking on doors until someone opens them.
Because Bennett deserves every opportunity to reach his full potential.
And if there’s one thing this journey has taught me, it’s that no matter how many times we’re let down, we will never stop showing up for him.
And if I were to tell people even half of the experiences we’ve had navigating healthcare for Bennett, I think many would be utterly shocked.
The things we’ve encountered with hospitals, doctors, specialists, referrals, insurance approvals, delays, miscommunication, and lack of accountability have been beyond frustrating. There have been moments where I’ve felt like I’ve spent more time fighting the system than focusing on my son.
What makes it even harder is that this isn’t for something optional—this is for a child who needs timely interventions, therapies, equipment, surgeries, and specialized care to have the best chance at reaching his full potential.
I’ve gone beyond phone calls and appointments. I’ve reached out to higher authorities, patient advocates, administrators, and anyone I thought might be able to help. Time and time again, I’ve been met with dead ends, unanswered questions, or promises that never led anywhere.
I don’t talk about it often because I try to stay positive and keep moving forward. But the reality is that these barriers have real consequences. Every delay, every setback, every obstacle can impact Bennett’s progress.
That’s a big reason why we’ve found ourselves looking outside of Louisiana and traveling out of state for care -other than the therapy we just started here recently. When you’re a parent, you’ll go wherever you have to go to give your child the best opportunities possible.
I carry a lot of these frustrations quietly, but some days the weight of it all is heavy. Watching your child fight so hard while also fighting the systems that are supposed to help him is a kind of exhaustion that’s difficult to put into words.
-Ben’s mama 🩵
