Shifting Gears

Team Kendall navigated numerous changes in 2018, most of them with enough grace to see pretty amazing benefits. Tom took on a new role as Stay-at-Home Dad, Kendall transitioned to middle school, and I changed employers for the first time in nearly 10 years. Shifting gears and getting all we can out of a new situation was definitely last year’s theme, and it was good practice for all of the exciting changes we have planned for 2019!

One of the changes that we experienced, however, was so seismic that it shifted my entire perspective on our family’s special needs journey…and yet, on a day-to-day basis, it goes largely unnoticed.

We received a new diagnosis.

Since Kendall was about three years old, we have been through multiple tidal waves of diagnoses and discovery trying to figure out how her body really functions and why. The alphabet soup of diagnoses includes PVL, LKS, SPD, ID, and ASD. With each test or assessment, I have tried to categorize what we’re seeing as either the origin of symptoms or the outcome of underlying problems, but we can never be certain with this chicken-and-egg game. When we sat in a neurologist’s office nine years ago and were presented with an MRI scan of our little girl’s brain that showed two patches of scar tissue, it felt like we had a definitive cause–at some point, likely during her traumatic birth, blood stopped flowing to her a brain for a moment, leaving permanently damaged brain tissue around the ventricular arteries. Since that day, we have been treating symptoms of a neurological disability. Then we were assigned to a different neurologist.

New eyes bring new perspectives and new curiosity. Where have her development peaks and lags been? How has she responded to this therapy and that medication versus these? Why has she grown to only 50 lbs.?

New tests, new assessments, and surprisingly, a significant new diagnosis at the age of 12: chromosome 16p11.2>12.2 microduplication. A genetic disorder in the form of slight duplications in the 16th chromosome.

I have spent countless hours, days, years building up acceptance for the fact that her brain was damaged in my womb. This new diagnosis doesn’t mean that didn’t happen–it did. But it means that her development and way of living in this world would have been different anyway. Why did the genetic mutation happen? What would her life have looked like without the combination of disabilities? We’ll never know, but I certainly think about it often.

I still haven’t wrapped my brain around this new perspective, and at first, I was surprised at how uncomfortable it felt to look at our journey differently. I had a story, a framework, that made sense; it was painful, but it made sense. Now we have seen that even something as concrete as scar tissue in an MRI scan doesn’t tell the whole story, which is scary and exciting all at once.

I’m shifting gears and learning to view this road as more fluid and flexible than ever before. The opportunities and potential become much more vast when the story isn’t fixed, so I hope 2019 is ready for us!