“He can’t bite my ear off if I knock his teeth out” – Jake Paul. 

At the start of the year, I penned some reflections as I normally do, ready to share a “start to the year” post here on the blog.  My state of the union.  Goals for the year ahead.  Big plans, bigger dreams.  Yet as I typed, I emptied out the contents of a most stressful holiday season (in one word – PUPPY!).  Ok, there was more than that, but a puppy certainly didn’t help.  After a couple of pages of mind dumping I realized that the contents of what I’d written was just too depressing to share.  The list was long.. woes and worries, challenges and angst, disbelief and anger.  And so, more than halfway through, I stopped writing and simply walked away.  That was seven months ago now, but the key takeaway from that morning hasn’t left me.  What has proven true to the utmost degree was the title of that blog post.   I still think of  those two words daily.  “No Agenda”.  And as long as I honor its mantra, the days and months that have followed have gone smoother than when I don’t.

Despite my no longer working, simplifying our schedule and decreasing commitments, 2024 remains a whirlwind.  Managing Sasha’s continually changing condition has been a bit like shadow boxing.  In the fall of 2023, Sasha’s care team sounded the alarm with increasing volume advocating for a g-tube placement for safer, more efficient feeding.  Her weight loss was finally showing up on a scale and her muscle loss had been evident for most of last year. A g-tube, I was told, would allow her a safer route for food and fluid intake along with an avenue to get medications in her, which will be of paramount importance should her swallowing continue to decline.   The good news: this would not negate her ability to eat and drink orally whenever safe to do so.  Simple enough, one would think! But for me, it was anything but. I cannot commend highly enough the multiple doctors, from Sasha’s Complex Medical PCP to her Palliative Provider to her Neurologist, Geneticist and Nutritionist, for their patience over a 9 month period in navigating my concerns and hesitations.  I met with anesthesia, cardiology and her assigned trauma surgeon (this is not a trauma surgery but scheduled in a manner so that all the bells and whistles are available in the OR). Each and every individual was filled with the time and patience to navigate both my parental and nursing angst.  Last month, during a visit with palliative care, I shared that I had come to terms with the knowledge that I will never feel 100% certain on this decision, but that I had come to about an 80/20 ratio of certainty, which was the threshold I needed to feel confident in scheduling her surgery.  “I will call to schedule as soon as soon as we end here today.  I want you to know that”.  I could see relief flood young Dr. Wilson’s face, one of the kindest most empathetic providers I have ever met.  Ultimately, I let one day pass before calling.  My blood pressure lowered as I got an answering machine at the surgeons office, and I certainly didn’t mind the three weeks of phone tag that ensued.  Finally, the surgical scheduler and I connected.  I’ve decided not to share the exact date in order to get to the other side of this quietly, but later this summer Sasha will be getting a peg tube placed. 

For a very long time, Sasha’s care team was providing me only the benefits a g-tube will offer, while I was only presenting the concerns.  Many may think the quote I opened this post with is out of character for me (and it totally is….I am definitely not a boxing fan nor a pop culture follower of individuals like Jake Paul!!). But Jake Paul’s quote regarding his much anticipated Mike Tyson match-up encapsulated everything I felt about Sasha’s potential surgery.  All I kept seeing, every time I contemplated the sparkling g-tube endorsements from her medical team, was a boxer falsely inflated by his coaches in the corner of a ring mid fight.  We’ve all seen it; the shoulder rubs, the boisterous pats on the back and the bravado behind their words of encouragement.  You know that infuriating feeling when you know a fighter is going down yet his people insist he gets back out there?  Of course they do, that’s the nature of the sport.  He’s being told he’s winning this thing and all the viewer can see is his defeat. It’s harrowing and awful. 

That’s how I felt for a long time as I challenged the medical professionals on Sasha’s potential g-tube.  No one was talking about the way this disease was headed.  No one was acknowledging that we were late in the match and this decision signified that Sasha was tired. It took almost  a year to reconcile Sasha the struggling boxer with her care team’s  campaign of encouragement.  Sasha and I were not being falsely inflated with confidence.  We knew where we stood in the fight.  At last, my head cleared and I understood what her team was trying to convey and why now is the time.

With this going on in the background, I had to acknowledge other things.  This was not the year for Sasha to hike in our annual Sunrise Ascent on Mt. Washington.  While we still hike weekly with our beloved Adaptive Sports Partners organization, longer days with exposure to mixed elements and extended durations of sitting are no longer comfortable.  A planned winter vacation to Myrtle Beach is getting scaled back halfway in distance.  Feeding times are lengthy now, with more time at home needed to ensure caloric intake doesn’t wane and that safe swallowing remains at the forefront. 

I suppose 2024 does have an agenda after all.  To be present.  To cherish what remains.  To create new experiences within the reality of what is.  This is nothing new…it’s not revolutionary.  It’s what so many talking heads, influencers (more like Mel Robbins, maybe not Jake Paul!) and psychologists talk about ad nauseum.  But its important work.