Navigating the Abnormal

When the best laid plan is surrendering to the now in the face of a diagnosis.

Earlier this fall G began experiencing some significant and concerning cognitive challenges. 😔 So much so that working outside the home in an emotionally demanding role was clearly no longer viable. We scrambled and shifted all of our energy and attention into making appointments, securing referrals, and readjusting our expectation of “normal” life. I wrote about the chokehold of confusion in yesterday’s post if you want a little backstory for good measure.

the good stuff is the simple stuff.

It’s now months later, and all the we know for certain is that his MRI does show that he has chronic small vessel ischemia. Essentially there is damage to his brain that is abnormal for his age. Likely due in no small part to a pediatric brain injury that he sustained when he was hit by a truck while crossing the street at age 5 resulting in his skull fracturing in 3 places. Pretty traumatic stuff for all involved. Add multiple head injuries from sports and musician life for the past 53 years and here we are. Simply put: his brain health is our top priority now as we do everything possible to slow further damage even while we wait on the full current assessment.

SO many details of life make about a million times more sense now— because on one hand every day looked a lot like groundhog day for the past few years, but at the same time every day was something utterly unexpected. And trying to navigate any sort of normal when nothing makes sense is the epitome of confusion.

still my favorite weirdo.

Anyhow…we don’t know what it all looks like just yet. It is grief. It is hope. It is patience. It is letting go of the expectation that I should be able to operate the way that I once could. It is taking forward steps into the fog. I know it means asking for help sometimes and being uncomfortably vulnerable other times— and somehow balancing the need for rest and retreat with the urgency and call not to waste our precious time. It’s about creating magic and wonder and loving fierce and wild. Making memories now that we can tuck in our hearts forever is where we will place our faith and focus. Frankly, it is scary.

I literally heard the phrase “Write for Your Life” as I was praying last week. And so, I will. We will. We will share our adventures and our fears and our hope in whatever ways that we can for as long as our souls feel safe in that sharing. And honestly, nothing feels more vulnerable than sharing when nothing feels certain.

I will try to pop into Facebook and Instagram and post pics & stories, but if you want to support us along the way, Joyfully, Kirsten will be where you find the bulk of the updates on life, travel and finding hope in hard places. ❤️‍🩹