Whose Face Do You See? Humanizing the Healthcare Debate

I’m grateful to my friend, Rev. Robyn Bles for sharing this guest post, on what would have been her daughter’s 3rd birthday. 

Whose face do you see?

With his recent diagnosis, Senator John McCain became the face of the healthcare crisis.  For many months this summer, baby Charlie Gard, and infant from the UK, was the face of that debate. 

I see a different face. I see my sweet, strong, Milly.  My first-born child with honey golden curls and sky blue eyes that you could get lost in delightful daydreams.  Her precious face is who I always see when the discussions turn to debates and we begin to see political ideology and divisions, rather than daughters and sons.

I know discussions and debates are valuable – they’re how we begin to compromise and find a productive path forward. But my friends, my weary heart, ears, mind, spirit, everything of me is worn out with it all.  And I don’t think I’m alone.  I don’t think you have to have walked the parenthood path I have to be this bone-deep weary.  For you see, Charlie Gard’s parents and I have something in common.  We both know what it is to live in the possibility of hope, while facing the grim reality of death before you.  For good or for ill, those brave parents have had the public platform to playout their parental pursuit and I have only prayed for them.  

I imagine their story was much like our own.  They dreamed of bath time and bedtime stories.  They thought of messy diapers and parental mistakes.  They never envisioned doctors, hospitals and medical plans as the backdrop for these dreams.   No parent truly believes the worst-case scenario will be your story.  No parent concretely dreams of the contingency plan for when the absolute worst happens.

But that’s where Chis Gard and Connie Yates, Charlie’s devoted parents had to live, for the 11 months of their precious son’s life, in this space of absolute horrific unknown.  I have no doubts they had amazing doctors, nurses, social workers working tirelessly to find some concrete hope to build a medical plan.  I also have no doubts these parents encountered people along the way who deserved a swift punch to the face.  I’m a minister, but every time my husband and I met with a neurologist to see how our daughter’s brain injury was affecting her development I seriously questioned my commitment to non-violence.  

A certain level of detachment is necessary when you deal with these matters of life and death, precious mystery and the beloved humanity of all of us who dwell here.  I realize these neurologists I dreamed of pulverizing were demonstrating their own professional practice of detachment, but there was nothing detached about this for me.  That brain they were discussing was my daughter.  

We all live in this level of detachment most of the time.  To be honest, we sort of have to in our 24-hour news cycle and globalized world.  We’re hearing about more and more horrific events every moment.  We have to put a little Teflon around our hearts just to get through the day.  

Most parents expect some hard moments – that time your child first utters, “I Hate You!” or you’re dealing with a failing grade or school yard bully.  Most parents think bridging their children from one phase to another, from bottles to sippy cups or tricycles to two-wheelers, is an exciting challenge.  But when parenthood brings you to bridging your child from this life to the next, you are truly walking without a plan.

I can’t imagine how Chris and Connie dealt with having to navigate those waters in such a public and political fashion.  As much as I have prayed for them, and hated how their story was so widely publicized – I also know no matter how this story is spun to support this political perspective or another’s, it’s not their story.  This story is Charlie’s.  It’s Connie’s and Chris’s story.  And, it is all of our story.  For no matter how detached you are; no matter if this child is British, American, or any other nationality; no matter if this child is born with a genetic disorder like Charlie, or suffered a horrible accident like our Milly – these are all the beloved children of God.

So as I prayed for Charlie this summer–who has now passed on–as I continue to pray for his parents, and tearfully imagine my own sweet girl welcoming Charlie into the great cloud of witnesses who have gone before us; I also know this is not the end of Charlie or Milly’s story.  I know they will not be the last brave children or scared parents to traverse the medical minefields.  I know this story is bigger than two beloved babies and spreads beyond the life-span to encompass people in the prime of their lives and on into what John McCain now embodies as “the golden years.”  Don’t we all hope to have such a long and well-respected career, and then in the face of our own mortality rise strong to keep up this good work?  Don’t we all hope that work could allow for each and every person to see the same level of care and support that now surrounds Senator McCain as he fights brain cancer?

This story holds the faces of everyone we know and love because the care for our health and wholeness isn’t a political right or privilege, it isn’t a democrat or republican debate, it’s the very story of our humanity.  The ways we care for one another is what defines the great religions, is embedded in our marriage vows, and is the very foundation of every civilization.  By writing this I’m not trying to support one side or the other; quite frankly I think both sides are deserving of a few face-punches, but that is not modeling, nor getting us any closer to the type of care I hope, dream, and know we’re capable of.

A mentor of mine once said Milly taught me how to hold the present lightly.  She showed me how to treasure every moment because we honestly do not know what will happen next, no matter the dreams, plans, or wishes.  This struck me as odd, because I held my first daughter so tightly.  I knew her time growing with us would be brief, so I clung, I grasped.  Even now as our second daughter approaches the age and weight of the last time I held Milly, my arms don’t ever confuse the two.  They know the difference between my darling daughters, and they certainly do remind me to hold lightly.

For these precious lives of ours often cause us to clench, to grasp, to cling tightly to our beliefs and positions in an effort to wall off the inevitable pain and difficulty.  If we allow our hearts to harden as we barricade ourselves in this camp or another, then we all suffer.   But if we allow our arms, our hands, our hearts and minds to hold lightly, cherishing the life, the lives that surround us, we begin to see we’re all deserving of care.  We’re all in need of a little tenderness and support.

I don’t know Charlie or his parents.  I don’t know Senator McCain or his family.  But I pray for them.  I hold them lightly in prayer for I know what a gift is has been to share Milly with others.  I know that without the support of our family, friends, church, and yes, even health care system, we would not have been able to hold and love our girl for as long as we did.  And don’t we all deserve that – one more hug, one more kiss, one more tender moment?  Doesn’t the face that rises to the surface for you deserve that, as well?

Rev. Robyn Bles serves with the good people of West Des Moines Christian Church (Disciples of Christ) in West Des Moines, IA.  She thinks the Midwest is the greatest place people don’t yet know about; and discussing faith, food, and footwear are the foundation for any good conversation.