What enables parents to incrementally let go of their fear, loosen their grip, relinquish their oversight, and set their child free? As the fourth year of recovery sped by, we were locked in a constant power struggle, and we didn’t know the answers or the best way forward. How could we gain confidence in Matt’s ability to face the unknown, given all the TBI had stripped away?

As 2022 dawned—a full year after his first neuropsychological evaluation had formally identified his anosognosia, and just weeks before his scheduled one-year retest, which showed abysmal change—our most daunting hurdle remained that missing reflective lens. Matt’s perceptions simply did not align with the planets. He did not know what he did not know, nor could he see how that blindness might impact his future. It was terrifying. How could Mike and I grant him self-governance and independence, given all that could go wrong?

Matt increasingly questioned the value of continuing to read aloud. His speech therapist, Mike, and I consistently reinforced the idea that these grueling oral exercises would ultimately permit him to achieve his long-term career goal of returning to the lecture hall. At this stage, however, he still read at half the average rate and routinely made mistakes.

While we intentionally highlighted the strides he had made over the past year—sounding out words more fluidly and getting stuck less often—we couldn’t adequately clarify the rationale to his satisfaction. We tried to show him that, with practice, he made fewer errors and corrected them more effectively. The carrot we dangled before him was the promise that, soon, his speed, fluency, and accuracy would gradually fall within the normal range.

Our frustration wasn't isolated to our four walls; his speech therapist was tangled up in the exact same quagmire. Jessica clearly understood the stark disparity between our opinions and his viewpoint, as well as the volatile interpersonal dynamics stirred up when we couldn’t answer Matt’s questions to his satisfaction. In her clinical notes, she captured the stalemate perfectly: “Today, Matt did not want to be in speech therapy because he couldn’t understand the benefit.” She went on to confirm our deepest fears, noting that without some level of insight into his deficits, skills such as self-correction, self-inhibition, and self-editing—all crucial benchmarks for a professor—would remain severely impaired.

Yet, even amidst the heavy trials of self-determination, spring brought radiant discoveries of forward momentum. One day, I asked him to jog, and he did! He was so excited that he smiled like crazy while intermittently running a short distance. We also saw undeniable improvements in his short-term memory, such as clearly remembering meal plans we had discussed the day before. Even more thrilling were the sparks of emerging self-awareness. During a practice lecture, he suddenly recognized that he had discussed a bullet point out of order; he smoothly avoided repeating it in its normal place and corrected a fact he had misstated. It was the very kind of real-time self-editing we had been praying for.

Matt’s social and cognitive interactions were vibrantly on display at a recent wedding. While talking to Chris, the groom’s PhD advisor in engineering at Rensselaer Polytechnic Institute (RPI), he explained the logical sequence of his past four years with remarkable clarity and powerfully conveyed his enduring desire to re-enter academia.

Beyond his academic articulation, his blossoming awareness of others was equally profound that night. In one conversation, he perceptively sensed a friend’s fatigue from their intonation and asked a thoughtful follow-up question. Later, while seated at a table, he automatically shifted his things to make room for me on the bench the moment I approached. As caregivers, it’s so easy to get hung up on the daily struggles. We needed to grab hold of these wins: proof that beneath the stubborn surface of his anosognosia, Matt’s empathy, intellect, and zest for living were being rekindled and, fingers crossed, would catch hold if we persevered.

We tried to leverage these noteworthy breakthroughs to justify continuing speech therapy and my structured home program—hoping to support his efforts to walk, talk, and think for just a little longer. But Matt resisted, content instead to tuck into a book, play cards, play the piano, and work on his laptop entirely on his own terms.

On so many fronts, if only Matt could see the flip side of the coin. When we could discuss the merits of these programs or other hot topics from a purely rational standpoint—rather than from our raw emotions—Matt would sometimes acquiesce. Increasingly, though, he met us with a flat, “No, I’m not doing it.” In his mind, he was right; he knew what was best for himself. Period. Needless to say, this didn’t sit well with his supporting cast. In an effort to mitigate the friction, we even began teaching him a gentler script, explaining that if he rephrased his refusal as “I would prefer not to,” it wouldn’t ruffle so many feathers.

Matt pulled no punches, reporting to a confidant: “Mom thinks I want to drive the bus, and an empty bus at that! She advocates for ‘Team Matt’ to be on that bus.” His words pierced me because they were so true. In response, I practically pleaded with him: “Don’t push us away, or talk negatively, or believe that our recommendations and activities aren’t of value. Please, try to understand, embrace, and be optimistic.”

Beyond our give-and-take, Jessica was facing the same exhausting cycle. Repeatedly, she listened to Matt complain that he didn’t think therapy was advancing his cause, while she consistently outlined the clinical merits of their sessions, ad nauseam. She continually addressed his reduced insight into his own impairments—but of course, he couldn't see the very thing that was blocking his view. More often than not, she found herself talking in circles. Knowing how genuinely frustrated and unhappy Matt was, Jessica finally encouraged him to speak directly to us about his right to self-rule. He did, and we did. The lengthy talk, like so many before, left us to grapple with our internal conundrums. How could we not advocate for what we felt were imperatives to his success?

What if we allowed Matt to stand on his own and make choices he felt were in his best interest—decisions made in ignorance that might, in the end, prevent him from achieving his passion of being a professor? It was a terrifying roadblock: to overcome and advance, wouldn’t Matt, at least in part, have to perceive and acknowledge his limitations and, in lockstep, agree to participate in the process of improving or developing compensatory strategies?

When does a parent stop holding a child’s hand crossing a street, walking in a crowd, or in a foreign land? How do you balance the jitters with the possibilities? The first time you leave your child with a babysitter, or watch them head off to summer camp, or drive away from their college dorm? Each milestone harnesses distinct moments of anxiety and excitement. There is no arguing that these experiences are necessary steps in the march toward autonomy; however, we were missing the second part of that equation—anticipation.

Instead, the ongoing tug-of-war between Matt’s rights, his unpredictable behaviors, our differing personal beliefs, and—most noticeably—our drastically different stress tolerances became the definitive backdrop for a rocky future. Because Matt was not an island unto himself. Options that might limit his self-sufficiency directly affected Mike and me—our lives, our future. The thought of easing up on the throttle of progress felt like a stark warning flashing before us: “Impending unfulfillment. Turn Back!” It meant facing the prospect of Matt—a man previously defined by significance—choosing a life of mediocrity, limited social engagement, and lifelong dependence on others.

For Mike and me, the future meant sacrificing our retirement dreams. In the back of Mike’s mind was a nagging, quiet terror: who would come alongside Matt to manage his affairs when we were too old to be there for him? And for me, it was the crushing sense that I would have failed him, bested by this single impairment—his diminished self-awareness—which held the definitive key to maximizing his potential and his happiness.

© 2026, Sarah Watkins