Playing Through It

Camille in her Star-Trekian, self-warming
hospital gown.  I NEED ONE!

A little over a week ago at an event benefitting Outlook Nebraska, Inc, Camille got to meet Vera Jones, former Syracuse basketball player, Indiana basketball coach, former ESPN analyst and current Big 10 network analyst.   Given her own love of everything basketball and her tendency to provide a continuous stream of opinionated game commentary, it was a match made in heaven.  As what-a-small-worldness would have it, Vera has an adult son who lost his vision at the age of 12 as the result of a tumor pressing on his optic nerves.  The words of wisdom she has gleaned from her life experiences were 1) there are going to be fouls and 2) live your best life by striving to play through them.  See how she did that basketball analogy?  Clever little thing.

Camille is no newbie when it comes to life fouls.  No human really is. In all honesty, though, she truly kind of belongs to one of those secret societies nobody wants to belong to of really resilient kids who’ve had to put up with a lot of medical crap-ola.  You generally don’t see it come across in her go-get-em attitude and resilient spirit, though.  She usually just keeps playing through. 

Nevertheless, in August, just before her maiden voyage as a freshman at Millard West High School, we followed up with her orthopedic doctor and neurosurgeon at Shriner’s Hospital in Minneapolis, who threw us some heavy-duty food for thought.  One may recall that in the summer of 2017, she had a procedure called a selective dorsal rhizotomy, a surgery done on the nerves exiting the spinal cord to halt the spasticity caused by cerebral palsy.  That spasticity was causing abnormal gait patterns and if left unattended, could progressively pull bones out of alignment and decrease her chances of sustained mobility with aging. While the rhizotomy was quite successful, it really should have been on the table when she was closer to the ripe age of seven—not fourteen.  As a result, it had already wreaked some havoc, causing a lot of inappropriate rotation in her legs, which have in turn caused problems in her feet.  So in August, her team proposed a “Single Event Multi-Level Surgery,” in other words, a boatload of simultaneous procedures done in the quest to repair the wreckage caused pre-rhizotomy. 

Hearing that proposition was, in fact, not the highlight of our parenting careers.  She had trooped through her mentally and physically exhausting rhizotomy rehab like a proverbial champion.  Nearly the last thing we wanted to do was throw a whole new set of obstacles her way.  Don’t get me wrong, we were very aware and grateful that this was nothing we had to choose in order to sustain life; we had been down that road 14 years ago and have peripheral friends who are mourning or fighting for life.  Still, we had to gather a freak-ton of information and ultimately trust our intuition in order to decide how to best predict the future given the present to afford her a life relatively free of pain with the best mobility she can possibly achieve. 

Fast forward.  Today she had the queen mother of all orthopedic procedures.  The rundown:

·      Bilateral femoral de-rotational osteotomies (cutting the biggest leg bones, aligning them correctly, and placing hardware)

·      Bilateral tibial de-rotational osteotomies (cutting the bigger bones in the lower legs, aligning them, and placing hardware)

·      Bilateral hamstring releases (cutting the tendons in the back of the leg to afford more straightening of the legs)

·      Bilateral rectus femoris transfers (moving the insertion point of one set of quad muscles from the front to the back of the leg to aid in leg extension)

·      Bilateral bunion repairs (fixing both big toe joints which have become deformed because of poor foot strike brought on by the poor leg alignment and spasticity)

·      Left foot reconstruction (which was really too detailed for me to understand)

(Bonus points if you read through all that.  Understanding vibes if you just thought “holy crap” and skimmed forward.) 

She sustained a whopping intentional, flagrant foul.  And I am so incredibly proud of her because she was a part of every single discussion with every doctor and every school teacher and official, laying out the plan she didn’t want to choose but understood she needed to choose.  She has handled it with grace and introspection.   She has dictated the timing and logically made informed decisions with the gentle guidance of her healthcare providers, her teachers and her parents. 

She has her eye on the prize. 

I think of myself at the age of fourteen and stand in awe of her grace, her resilience and her positive spirit.  She has more grit in her pinky toe than I ever had in my whole person.

The road ahead of her in the next days, weeks and months will be hard.  She will have to put on her rehab pants and work like she never has before—even though this isn’t her first rodeo.  I have every confidence that through the struggles and the fouls, she will play through.  Wish her well from the wish-iest places in your heart. 

As I finish this up, she is done with her seven-and-then-some hours in the operating room, basking in the glory of epidural numbness, tapping away on her phone to see what she missed back in Omaha at MWHS. 

Her most negative words of the day as she came to life in the recovery room: “Well, I’m glad that’s over.” 

In truth, it’s just beginning. 

Play away, sweet girl.