Good food, dogs, sister, birthday, friends, bed.  Home, home, home. 

OK, so chapter 2 begins.  It was so good getting Carson out of the hospital.  Getting him home last Sunday was a huge thing for us to celebrate.  No more beeping machines or nurses waking him up every 2 hours for blood, or pills, or vitals.  Instead, after 8 1/2 weeks, it was to be our discovery of a quiet new routine.

The Quiet

Quiet can be peaceful.  Where the mind resets.  Where you connect with the divine, truth, grace, purpose.  And, quiet can create the space for hard, sudden, unexpected realizations. 

As we got Carson into his room Sunday night.  It was so good for him to lay in his bed, have a moment with the dogs, get him some good and comforting food.

But quickly, some real sadness set in.  His baseball glove, pictures of friends and snowboard, slightly obscured by a rearranged room to accommodate a wheel chair, crutches and a bedside table that tries to hold the phone, books, water, Gatorade, plates of food, headphones, all because a couple simple steps aren’t yet possible. 

That baseball glove brought up memories of a past and visions of a future that were forever changed. 

It was one of the hardest moments yet.  I’m tearing up thinking about it now.  The familiarity of home in a foreign land of an unknown future surrounded by artifacts that no longer fit, at least for now. 

Those next couple days were hard.  Not much pain, but lots of sorrow. For all of us.  But as Carson so remarkably does, he took in what was true and made a decision that “These” are the new conditions.  OK…let’s go. 

The Week

So, a couple practical things happened that propelled forward movement.  To what destination, we don’t yet know, but we are “marching” the path.

This last week Carson had a birthday, met with the knee surgeon, a Washington University nerve surgeon and a remarkable physical therapist we believe we were so lucky to find. 

We had worked hard for about a month to get Carson to a local, highly respected neurosurgeon.  Our appointment was Wednesday morning at 8am.  Carson woke up at 6:30am to get rolling and was in rough shape, almost passed out a couple times and unfortunately, we had to cancel the appointment. 

We were worried about his iron levels as he needed 3 days of IV iron while in the hospital.  Rest, food, hydration were the only solutions we had, short of back to the ER.  He’ll have ups and downs with energy and we just have to manage it. 

The University Nerve Surgeon

After 6 weeks of trying to get with "a particular university", we had a call Wednesday afternoon.  We were wildly disappointed to not learn anything new (we’ve done a lot of research), and also to have the hard questions we were asking to not receive answers or guidance, instead outright avoidance like Bill Clinton at his best.  The truth, we knew the answers already and if nothing else it propelled our conversations to new clarity and resolve. 

The truth is simple.  Can the muscles in Carson’s lower leg be preserved long enough to give the sciatic nerve time to grow and reinnervate the muscles?  The sciatic nerve has about 36 inches to grow to get to the foot, about 20 inches to grow to get just below the knee.  Muscles unfortunately die, between 12 and 18 months.  They don't come back. Time is the enemy.

So, Wash U. is out.  We meet his local nerve surgeon (Dr. Desai) Tuesday both as follow up appt and to get a referral, pending the outcome of that conversation, to another innovative nerve surgeon in Utah. 

There are things that can be done. We'll continue to explore agressively.

The Serenity Prayer

“God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.”

Following the unsatisfying University nerve surgeon conversation, Carson shared with me his perspective.

Carson - “Dad, I feel like the healthiest thing for me is to mentally prepare for amputation, while doing everything we can to achieve a different outcome.” 

Me - “That does seem healthy, how do you feel about that perspective?” 

Carson - “Honestly, it feels freeing.”

More tears witnessing what seems remarkable.

The next day we had Carson’s first PT appointment.  Carson shared with us videos of amputees doing athletic things.  There was no sorrow. No self pity. Just an exploration of a possible future.

Not the goal, but such a stoic wisdom with which Carson is operating.  A wisdom and strength that once again, brings tears to me and Barrie.

The Knee Surgeon

We met with Dr. McNair who will perform Carson’s knee reconstruction.  He is kind and highly respected.  He was honest.  “I don’t know what kind of function you’ll get back.  I don’t know if your knee will handle skiing or hiking.  It won’t be the same, but we’ll do everything we can.”

Within 24 hours, with the brace holding Carson’s lower leg firm, he was lifting his leg with his quad muscles and hip unassisted, for the first time. 

Follow up appointment on the knee is the 23^rd of October.  Surgeon wants to know the infection (that seems like a lifetime ago) is completely gone and see progress in Carson’s knee mobility before surgery.  Carson’s patellar tendon was severed in the accident.  That needs a full twelve weeks of healing before an attempt at surgical manipulation and reconstruction.

So, Carson gets some time off to focus on strength, before the next surgeries. 

The Birthday

Hannah (Carson’s sister) flew in on Friday, a couple of Carson’s friends came over and arranged a zoom call with some friends off at college, and our friends Brian and Leanna. We played games and Carson was out of bed for almost 11 hours Friday.

It was a really, really good day. 

He was whipped Saturday and needed to rest.  But today, we hit it hard.  Mind.  Body.  Spirit. 

Reading and studying to feed his mind and embrace the intentional vision of a future he chooses to create independent of the circumstances.  Food and exercises that create the best possible conditions for strength and resilience.  And prayer, meditation and philosophy to best relate, adapt and have gratitude in the face of new conditions. 

He’s so strong.  We are so proud of him.  More importantly, we are inspired by him and inspired to be his devoted allies.  We are walking this path arm in arm with love, courage and the knowledge there will be ups and downs on a journey through really hard stuff that seems destined to lead to something special.