Grieving the Living: The Silent Reality of Chronic Sorrow and Medical Parenting

We talk a lot about "hard things" on this podcast. We talk about resilience and trauma and overcoming the odds. But we rarely talk about the kind of grief that doesn't have an end date. We don't talk enough about the parents who are waking up every single morning to a life that looks completely different from the one they dreamed of, with no guarantee that it will ever get "easier."

Misty is the mother of Jackson, a seven-year-old boy with a rare genetic disorder called IQSEC2. Jackson is non-verbal, suffers from drug-resistant seizures, and relies on Misty for every single aspect of his survival.

Her story isn't just about a medical diagnosis. It’s about the death of the person she used to be, the ferocity of a mother’s love, and a concept I hadn’t fully grasped until now: Chronic Sorrow.

If you are a caregiver, a medical parent, or just someone trying to understand how to support a friend in the trenches, you need to read this.

When "Normal" Disappears

Misty described herself before Jackson as a woman who just wanted to be a mom. She already had two older boys from a previous marriage, and when she got pregnant with Jackson, everything was textbook. The scans were perfect. The genetic testing was clear. There was zero indication that their lives were about to change forever.

But then came the missed milestones.

At first, it was subtle. He wasn't sleeping well. He wasn't tracking objects with his eyes. A pediatrician flagged developmental delays, but Misty—dealing with postpartum overwhelm—thought they could therapy their way out of it. They saw eye doctors. They got an MRI (which came back normal).

Then came the day that still haunts me just hearing about it.

At 18 months old, Jackson started "freezing." Misty took a video and sent it to a neurologist. They were told to come in immediately.

What they thought would be a quick office visit turned into a hospital admission during the height of the COVID-19 lockdowns in March 2020. Jackson was having 80 to 90 seizures a day.

Imagine being locked in a hospital room, your husband by your side but your other children barred from visiting, while doctors scrambled to figure out why your baby’s brain was misfiring. They tested for meningitis. They tried nine different epilepsy medications.

Nothing worked.

When the diagnosis finally came—IQSEC2—it felt like a door slamming shut.

The doctors didn't have a roadmap. The geneticist literally told Misty, "I don't know what to tell you," and handed her a printout from Google.

The Reality of IQSEC2

Jackson is seven years old now. Mentally, he is at the capacity of a six-month-old infant.

He cannot walk unassisted. He cannot speak. He has a severe sensory processing disorder and visual impairment that means he often doesn't see things until they've already passed him. His diet is incredibly restricted because dairy triggers inflammation in his esophagus.

Misty’s day isn't just "parenting." It is high-stakes medical management.

It’s waking up and praying a seizure doesn’t wipe him out before breakfast. It’s calculating formulas, managing diapers for a growing boy, fighting insurance companies, and watching him for the slightest sign of pain because he cannot tell her where it hurts.

And yet, amidst this heavy, exhausting reality, Misty told me,

"He is the most beautiful part of our journey."

She talked about the way he laughs—a belly laugh that erases the grief for a moment. She talked about her 12-year-old son, who steps up with a maturity that breaks my heart and heals it all at once, vowing that he will care for Jackson when his parents are gone.

But let’s not sugarcoat this. The love is real, but so is the loss.

3 Things I Learned About Medical Parenting

Misty dropped some truths that completely rewired how I view the special needs community. Here is what stuck with me.

1. The System is actively fighting against parents

This part made my blood boil. Misty shared a story about trying to get a bath seat for Jackson. Because of his seizures, he isn't safe in a standard tub—he could slip under the water in seconds. His doctor wrote a letter of medical necessity for a seat with a five-point harness.

The insurance company denied it. Their reasoning? "Bathing is a luxury."

Let that sink in. A safety device to prevent a disabled child from drowning was classified as a luxury item. They told her to "just wipe him down."

Misty isn't just fighting a genetic disorder; she is fighting a system that treats her child’s basic dignity as an optional expense. She has to make calls, source formulas from across the country, and battle for diapers and equipment, all while being a full-time nurse to her son.

2. Grief doesn't always mean death

Misty used a term that I think is going to validate a lot of you: Chronic Sorrow.

We usually think of grief as something that happens after a loss—a death, a divorce. But for medical parents, grief is a recurring wave.

Misty grieves the child who is still right in front of her.

• She grieves when she sees other seven-year-olds playing football.

• She grieves when she plans a future where her son will need facial hair shaved by someone else because he can’t do it himself.

• She grieves the "normal" life she imagined: the hunting trips with dad, the first words, the independence.

She told me, "I see the life I thought he would have flash before my eyes." And the hardest part? People tell her not to look too far ahead. But she has to. She has to plan for a future where she might not be there to protect him.

3. Stop saying "I don't know how you do it"

We’ve all said this, right? We see a mom in a wheelchair van or dealing with a public meltdown, and we say, "I don't know how you do it. You're a superhero."

Misty was gentle but firm: Don't say that.

She doesn't do it because she’s a superhero. She does it because she has no choice. She does it because she loves him. When you say, "I couldn't do what you do," it separates you from her. It makes her life seem like a tragedy you're glad you escaped.

Instead, Misty suggests saying this: "You are doing a great job."

That’s it. Validate the effort. Validate the love. Don't pity the circumstance.

The Expert Take: The Death of the "Old Self"

One of the most vulnerable moments in this episode was when Misty admitted that the "happy, carefree Misty" died the day they got the diagnosis.

"My husband said, 'I wish you were happy like you used to be,' and I said, 'Me too. But that person died.'"

This is a massive identity crisis that we need to acknowledge for full-time caregivers. When you become the external brain, body, and advocate for another human being 24/7, your own identity gets pulverized. Misty isn't just a mom; she is a case manager, a pharmacist, a physical therapist, and an insurance negotiator.

She admitted she is still trying to figure out who this "New Misty" is. She’s finding purpose in advocacy, in helping other moms navigate Medicaid, and in working out with her husband.

But we have to stop expecting caregivers to "bounce back." They have been fundamentally changed by the weight they carry.

Misty’s resilience isn't about ignoring the sadness. It’s about making space for it. She walks. She listens to music. She allows herself to cry. She accepts that she can be grateful for Jackson and devastated by his condition at the exact same time. Two things can be true.

You Are Not Invisible

To everyone listening who is managing a medically complex life: I see you. I see the paperwork piles. I see the invisible labor. I see the grief you hide so you don't make other people uncomfortable.

You are doing a great job.

If you want to support research for Jackson’s condition, please look into the IQSEC2 Research Foundation. There is hope for gene therapy trials, but they need funding and awareness.

Until next time, keep sharing your story.

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