Ellie between surgeries.
It's been an unexpected roller coaster of a 2023 so far. In November of 2022, 9 days after Ellie's 20th birthday, her shunt failed. She'd had it for literally 20 years with no revisions. I'm writing this from Children's Hospital Boston after her 6th revision since that first one in November. She's had a rough ride through meningitis/ventriculitis when that first revision got infected to External Ventricular Drains (EVDs) to revision after revision. The bacterial and protein debris left over from the infection has been wreaking havoc on the internal catheters and the programmable valve.
It's been rough. I am hoping this is the last revision needed. They replaced the blocked valve. The cerebral spinal fluid was really clear and she bounced back really fast. Here's to hoping. For now, Ellie is holding steady. She's still just as amazing as ever and the starlight never left her eyes in this latest surgery. It did in November. At that point I realized my assumption that she'd outlive us is entirely baseless. That changed me in a deep, deep way. The call to be present and be with her here and now is clear.
Between struggling to find stable carers for Ellie and trying to get to a solid working shunt it feels like the ground beneath us is always moving. It's like trying to get sea legs.
This whole experience is such a call to really consider our lives. I learned that it can't only be about Ellie. Dave and I have to create a life that we can live too. We are getting older. It made me want to move to a warmer more arid climate - possibly back to California/Los Angeles. Right after that thought the atmospheric rivers hit the state....Dave's take was that we'd know which parts not to go back to.
I also feel like we have been living on borrowed time. We've been so lucky to have had 20 years of no revisions. Hindsight is everything of course.
We are supposed to go home today. Ellie's got mixed feelings about it. She has been so very tired and a bit irritable as a result of unstable intracranial pressure. The image of water moving, rivers flowing and getting blocked comes to mind. Various areas of the country are awash as well. It's all fractals.
If there is no solid ground what do you do? I don't really know.
I can tell you the things that have shown to be lasting and real are my relationships with Dave and Ellie and my business partner, friends, and my clients. All people in motion, on their own rivers.
Seems obvious it's all about human connection beyond any routines or expectations of what the next day will bring. I still plan things. I just signed Ellie up for camp in June and it felt like unbridled optimism to do so. I'll be prepared and responsible and on top of things I have planned. But I don't quite trust in my plans.
It's been very humbling. I can only trust my inner knowing, be sensitive to, curious about, and responsive to the conditions that present themselves. I do feel a grinding down my ego and any arrogance I may have about control. That's probably a good thing.
The contemplative practices I learned as a teenager are put to the test too. Mindfulness meditation practices actually do work - they reset the brain and body to reduce inflammation, etc.
Discipline within the flux of a storm. Can't get into a regular routine so be opportunistic in the moments of quiet to fit things in. Like right now, writing this.
How do you deal with living on ever shifting waters? I'd love to learn from you.
Love,
Kathryn
