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Raising a disabled child in a “death with dignity” world

Zaitsava Olga - Shutterstock

Jeannie Ewing - published on 09/06/16

Yes, it’s difficult. Great things always are, and we are in the middle of a great mystery.

A little over three years ago, I envisioned welcoming our baby daughter into the world with glee and celebration. In my mind, she was the perfect baby, with 10 fingers and toes and a sparkling grin. After her birth, however, that idyllic image became a phantom. Sarah was born with buggy eyes, a protruding forehead, and fused fingers and toes.

We welcomed Sarah and her rare diagnosis, including the entirety of mystery that we knew would enshroud our lives from that point onward. We loved her, because she was ours, and her life mattered, regardless of the way she looked or what surgeries she would need or the intensity of ongoing therapies she would endure. It never occurred to me that Sarah would be viewed by some as a liability.

In the aftermath of Brittany Maynard’s promotion of  “death with dignity” and Me Before You’s push for empathizing with those who choose to end their lives, it’s ever clearer that the world continues to perceive “imperfection,” pain and disease as impediments to happiness. And as I read stories of people hosting “right to die” parties, I weep for my daughter and all those who are disabled or afflicted with various maladies.

When Sarah was six months old, she had her first surgery – one that required a surgeon to cut open her fused cranial plates and insert a metal device that would gradually open her skull so that her brain had room to grow. I watched this innocent baby suffer even despite the medical team’s skill in limiting her pain, and I couldn’t bear to accept that this would be her – our – life indefinitely. Yes, it’s difficult. Yes, it’s difficult. Great things always are, and we are in the middle of a great mystery.

It’s a constant temptation to believe that mercy means “controlling” the amount of pain we will experience or that authentic empathy involves accepting one’s decision to end his or her journey of affliction. How dare we encourage someone to live when we are not enduring his or her pain?

But I know from watching my daughter, and from getting to know countless others who were born with genetic conditions or have become disabled by accidents, that mercy is truly where love meets suffering.

St. John Paul II taught me this lesson when I was a young college student. I remember watching images of him as his Parkinson’s progressed, and the media was quick to signal impatience with his humiliating display of suffering, and his refusal to do the “sensible” thing and retire – be sick out of sight. But I saw something within and beyond that strife and struggle. I saw love. He became Jesus to me, and I wept for love of the crucified Christ with each passing day that St. John Paul II insisted on going on in peace and dignity, living and dying as God permitted.

The cross is a great teacher, and it frightens me to witness how it continues to be shunned in people’s lives.

My daughter and all people with disabilities or terminal illnesses are witnesses – living icons of the gift we have in the cross – in a world willfully distorting an authentic understanding of love. Living and dying with dignity isn’t about determining how or when we die. It’s about heroic surrender to the One who molded us in His image and likeness. And for this reason, I will fight for my daughter’s right to live – and suffer, if necessary – because her life has a grand and holy purpose.

CatholicismJubilee Year of MercyPracticing MercySuffering
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