In just a couple of weeks, Michael will finally meet with his neurosurgeon to discuss treatment for his Acquired Chiari Malformation Type I—a diagnosis we received over a year ago. That journey, like so many others we’ve walked together, has been anything but simple.
It all began with a seizure. Michael had a drop seizure Easter Sunday-2024 that resulted in a deep forehead laceration requiring stitches. A precautionary CT scan was ordered to rule out a fracture, but instead, we received the unexpected diagnosis of a Chiari Malformation. I had never heard of it before let alone pronounce it. Like many parents in these moments of uncertainty, I dove headfirst into the internet—a rabbit hole of overwhelming medical information and worst-case scenarios. I felt paralyzed. Numb. I couldn’t talk about it.
Understanding Chiari Malformation I
Acquired Chiari I Malformation is rare in adults and typically results from disruptions in the flow or pressure of cerebrospinal fluid. This can cause the cerebellar tonsils (the lower part of the brain) to herniate downward into the spinal canal, compressing the brainstem and spinal cord. Symptoms can include severe headaches, neck pain, balance issues, and muscle weakness—many of which Michael has experienced.
Because Michael needed general anesthesia for a full MRI, it took months for multiple departments at Oregon Health & Science University to coordinate. You would have thought this had been requested happened before. We had an appointment finally confirmed for August 30, 2024. But life had other plans.
The day before the scheduled MRI, Michael experienced another drop seizure and fell—breaking his leg in three places. Emergency reconstructive surgery followed, and his hospital stay stretched longer than expected. Once again, his MRI was postponed.
When It Rains, It Pours
Recovery was slow and required both in-home and outpatient physical therapy. Just as we were regaining our footing, Michael contracted Norovirus and went back in for a second hospital stay. And as if that weren’t enough, we returned home to find an eviction notice pinned to his front door. The owner of the home Michael rented, decided to sell.
We had two months to find him a new, accessible place to live—somewhere with a backyard for his companion dog, Scooby. I scoured the community and finally found a duplex: affordable, safe, with a fenced yard, and located in a quiet, gated community. The week before the move, I helped Michael get familiarized to his new home. We packed boxes and took them to his new place twice in the week before the move. He was still in his wheelchair, so I stacked the boxes onto his lap, and we took them into his new bedroom. My family rallied together, daughter Mollie, son-in-law, grandkids, friends, husband and I moved Michael into his new place the weekend before Thanksgiving.
Amid the chaos of recovery and moving, Michael also underwent surgery to remove kidney stones—a recurring issue for him. We’ve since adjusted his diet to reduce recurrence, and he’s taken it in stride, as he always does.
Full Circle
And now, nearly a year after the original diagnosis, Michael has had his MRI and an appointment with the Neurosurgeon is finally on the calendar. He’s scheduled for late June. When I emailed Michael’s dad and support team this evening to remind them of the appointment, I felt it again—that wave of fear, the knot in my throat. The paralyzing dread of another surgery he would need to endure. This one more invasive and critical than anything he’s had before.
But here’s the truth: Michael is 41 years old, and we’ve traveled an extraordinary journey together. We’ve faced it all—challenging behaviors, complex support plans, IEPs, diagnosis, misdiagnoses, annual assessments, broken systems, endless paperwork, and countless sleepless nights. And while I wouldn’t trade our bond for anything, I would give anything to spare Michael the struggles he’s had to endure.
To Other Parents on This Journey
If you’re reading this and walking your own version of this road—I see you. I know the exhaustion, the doubt, the resilience it takes to keep showing up. And I want to tell you something:
This life is hard. But it’s also beautiful.
Love fiercely. Celebrate every win, no matter how big or small. Find your people. Speak your truth. And above all else, take care of yourself.
We don’t get to choose the road, but we can choose how we travel it.
With strength and solidarity,
Michael’s Mom
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