Over the 13 months and five days of our daughter’s beautiful yet brief life, we had the extraordinary fortune of meeting and working with some incredibly gracious people.  Living in the hospital for weeks and sometimes months at a stretch, we developed relationships with kind and capable souls around us. This was especially true of those who delivered direct, hands-on nursing and medical care to Alexis.

A few of these kind and capable souls remain in our lives to this day. More than two and a half decades after Alexis died, these incredible human beings are still part of our memories and part of our lives. One such man is a pediatric nurse remains a close friend. I will call him JB.

JB became so much a part of our family that he voluntarily joined our home care nursing team for those rare occasions when Alexis was not hospitalized. This enabled our family to make one special roadtrip to our hometown of Syracuse, New York for Alexis’ only birthday just before she died in 1997.  JB’s work and commitment were nothing short of heaven sent.

Until recently, it had been several years since we got to reconnect with JB in person.  But a few weeks back when he came to visit, we found our bond was as strong as ever.  It was magical. Over six hours of non-stop conversation we caught up on old times, current challenges and future dreams.  We talked about our now grown-up children, our middle-aged problems and future goals.  We were able to pick up right where we left off without missing a beat.

Enter our son Zachary.

When JB first arrived for our visit, Zach was attending his day program (which we affectionately refer to as college.)  When he returned to the house with his caregiver on the afternoon of JB’s visit, Zach hadn’t seen JB since he was a toddler.  Since Zach was born after his sister Alexis died, he never got to experience the miracle of JB’s nursing care, advocacy and overall humanity directly.  Yet he could sense the weight of this reunion.

Zach entered the kitchen, knelt on the floor with a “W-shaped” leg configuration and gazed up at JB with curiosity and pause.  He has a way of knowing when something important is happening, and he reacted to JB’s presence accordingly.  JB delivered a huge smile to Zach, looked directly at him and said: Hey buddy it’s so good to see you, Zach.  How was college today?

After a long stretch of silence, Zach returned JB’s gaze and simply replied:  I miss Alexis.

We all just looked at each other and at Zach, in amazement.  Within moments he knew exactly who JB was and that he was part of our relationship with Alexis.  I had to catch my breath.

As if that wasn’t enough to get my attention, just after Zach said I miss Alexis, a photo in the next room slid from the wall where it was leaning, smack onto the floor, making a loud noise.

I went into the office to see about the noise and saw her black and white portrait facing upward from the ground.  This was no random photo.  It was one of the few professional images we have of her, created by another close friend and artist who put together a small collection of her photos that was displayed at her funeral.   The image of the photo is also displayed above.

Zach’s proclamation of I miss Alexis followed by the almost simultaneous falling of her portrait, reminded me of our deep human interconnection which transcends time and space.  We love to apply our intellect and logic to our lives.  Yet in those few seconds, there was no intellect or logic in the room.

There was just pure love energy.  It swirled around us and lingered in the air, like the aroma of a warm coffee cake on a Sunday morning, until JB left to return home later that evening.  It wasn’t until a few days passed that I really processed what I’d witnessed.

Upon revisiting the experience I was once again humbled, by the presence of love, life and experience.  These are not transactional happenings.  These are connections which are impermeable to interruption.  They are not threatened by decades of time passing, or subject to what is happening in the world.

These are actual threads of connection.  We can’t see them.  And we can’t miss them, once we have known this magical feeling of being more than our individual selves and part of the aggregate of our shared humanity.

I miss Alexis too.  And I’m sharing this story today, on Valentine’s Day because this day of love is sometimes referred to as a Hallmark holiday.  And there is nothing wrong with that.  It is just that love may mean or not mean different things to different people.

But in our home, we know what love is.

Love is doing the hard things again, and again, and again, and hoping to God that those hard things are the right things also.  Love is letting go of someone we love because their bodies no longer work, or haven’t ever, worked properly.  Love is the holding of agony and ecstasy in the same breath, understanding that they go together.

Love is saying Thank You that I got to meet my daughter at all and also saying Thank You that I didn’t die when she did.

Love is saying Thank You as we recognize Zach’s grace and brilliance.  Here’s a 70 pound, twenty-four-year-old guy who can’t eat to save his own life or point to the same part of his body that he is complaining hurts.  Yet, he sees this friend and immediately makes the association of JB to his sister.  And even more powerful is that he somehow manages to verbalize it, in a matter of seconds.

And this is love.

It’s not candy and roses.  It’s not a delicious meal or a card in the mail.  These things are enjoyable, and certainly part of the festivities of this annual occurrence.  But love itself is not something we can touch.  It’s not something we can create.  It’s not something we give.

Love is something we can become.  Alexis is love.  Zach is love.  JB is love.

And I am love.

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