Month: July 2017

Living the Impossible

Impossible.

That’s what they told us. Oh, they used different words at different hospitals, but they all said the same thing. After Kevin’s devastating spinal cord injury sustained in a fall, his situation seemed hopeless. He lay paralyzed from the neck down and kept alive by a ventilator.

He was first taken to the local hospital at Lethbridge, Alberta, but was quickly transferred by helicopter to a Calgary hospital. We drove twelve hours through the night to join him after we received the call. When we arrived at the Calgary hospital the next morning, we were ushered into a gray room and joined by a gray doctor. He talked somberly about all the challenges Kevin faced. I don’t remember much of what he said to us. But his face said it all:

Expect the worst.

The second consultation was with a sour doctor who presented us with a bunch of “nevers.” Kevin would never breathe again. He would never move his body below his chin or possibly his shoulders. He might not even survive the complications of the injury. He would never go home to the United States, because no airline would take him on a flight. No medical crew would consent to accompany him, and no doctor in the States would accept him as a patient.

And, the doctor added, they didn’t have vent patients there. Kevin’s only way out was death.

But God is a God of the impossible.

We rejected this push for euthanasia, and God opened the way for Kevin to be flown back to a hospital in the United States in a chartered Lear jet, accompanied by a volunteer medical team and his brother Erik. Through the generosity of the people of Canada and here in the States, everything was paid in full. Kevin’s Canadian surgeon was a wonderful man who gave us our first ray of hope by telling us Kevin would probably survive, although his chances of recovering any function or feeling were one in a hundred. Virtually impossible.

Kevin’s trials increased after transferring to Spokane, when he experienced two respiratory codes and nearly died both times. He struggled with two bouts of pneumonia, finally stabilizing enough to be moved to a rehabilitation hospital. Along the way, he surprised the medical personnel by beginning to regain feeling and some slight movement.

Still, they reminded him that he could never wean off the ventilator. They told us that it would be impossible for us to care for him at home, and he would have to live in a nursing facility.

Our God is a God of the impossible.

Seven weeks after his injury, Kevin went home with us, his family, as his caregivers. Two years after the injury, he weaned off the vent during his waking hours, only going back on it at night to sleep. He gained more feeling and movement back in his body.

Today he can run a computer, walk with help, and do a few things for himself. Recently he began a new, self-imposed exercise regimen and has made new gains. He taught himself computer animation and 3D graphics, ran a studio with his brother, and now is the founder and senior editor of a website devoted to Christian music, http://www.cmaddict.com.

In 2008, he served as honorary groomsman at his brother Erik’s wedding. He was honorary groomsman at his friend Grant’s wedding, as well. Last September, Kevin rolled down the aisle of our church to stand beside his brother Daniel as his best man at his wedding.

Every day for twenty years, we have lived the impossible.

It has been with great joy we have watched God work in our weakness. He has given us miracles without end in this journey. Together, we have watched God bring our family closer through trial and release the fragrance of His grace in our broken lives and dreams. We have stood amazed at the tenderness and love with which our adult children have served their brother and us. We see with joy that God is building new dreams.

Yes, life has been hard. Kevin has suffered much. But he has chosen to serve God in his suffering. We have chosen to serve God in standing beside our son. The beauty we have been privileged to witness far outweighs the sorrow.

Today, on July 11, 2017, we celebrate twenty years of watching an awesome God at work. We rejoice at twenty years of life restored to our son. We look forward to the future, knowing that our Lord is still a God of miracles. Every day, in His power, we live this wonderful, impossible life together.

 

The things that are impossible with people are possible with God.

-Luke 18:27

 

 

Charlie Gard: The Conscience of a Nation

He lies in a hospital room, his little eyes mostly closed. Although he is nearly a year old, he seems so small. Like millions of others, I only know Charlie because his picture and story have been in the news recently.

The first thing that catches my eye in his pictures isn’t the tubes attached to the ventilator keeping him alive.

I’m used to ventilators. My son Kevin has been on one since a fall in 1997 paralyzed him from the neck down. He has since weaned off the ventilator during the days, and only goes back on to sleep at night. For our family, the ventilator is well-named: life support. We are grateful for life support because it has given Kevin a chance to live.

The first thing I notice about Charlie is his beautiful face. His long eyelashes brush his cheeks. His wisp of hair is carefully combed. Stuffed animals have been tucked around him. He is obviously well-loved.

Charlie Gard was born to Chris Gard and Connie Yates of London, England, on August 4, 2016. He began to decline shortly after birth, and eight weeks later his parents took him to the hospital. It was discovered that their son suffers from a rare and terminal disease called mitochondrial depletion syndrome. He is one of only sixteen known cases of the disease worldwide. It has left him with brain damage and progressive weakness. He now requires life support.

Through aggressive research, Charlie’s parents have discovered an experimental drug that has not yet been used to fight MDS, but has helped some children with a related syndrome called TK2. This treatment is not available in the United Kingdom but is available in the United States. A fundraising effort has raised more than a million dollars for his treatments, care, and travel.

But there’s a hitch in their hope.

The Great Ormond Street Hospital, where Charlie lies, wants control over when and how he should die. The doctors there have decided to turn off Charlie’s ventilator. They have denied the family’s right to either transfer him to a hospital in the United States willing to treat him or to take him home to die.

In June of this year, the case was appealed to the authority known as, ironically, The European Court of Human Rights. The high court ruled against Charlie’s parents and in favor of the hospital’s case to remove Charlie from life support and prevent his parents from seeking experimental treatment for their son outside the United Kingdom.

His parents have fought hard to help Charlie keep fighting for life.

“If he’s still fighting, we’re still fighting,” says his father, Chris Gard.

These words ignite my heart, because Charlie Gard could have been my son. Kevin did not have the rare disease with which Charlie was born. But we have faced some of the same crucial life issues that surround this little boy since Kevin’s fall in July of 1997, during a teen mission’s trip to Canada.

When Kevin broke his neck in Lethbridge, Alberta, he was airlifted to a larger hospital in Calgary that was better equipped to treat spinal cord injuries. When we learned that he had been injured, we made the twelve-hour-drive through the night from Idaho to Calgary to join him there.

Upon our arrival, we learned the awful news that Kevin was paralyzed from the neck down and on life support. The doctors at the initial consultations gave us little hope for his survival and virtually no hope for his recovery. One doctor was adamant that Kevin could not live. When I realized he was talking about euthanizing Kevin, I rebelled with all my strength.

No one had asked our son if he wanted to live. We would not make him die.

Through a series of events I can only describe as a miracle, Kevin not only came home to live after seven weeks in hospitals and rehab, he gained back more than the doctors could have guessed. He has lived at home with his family for twenty years and accomplished much in that time. We are thankful for every day we have had with him.

Through Kevin’s injury and recovery, we have learned several important lessons:

  • Doctors can be wrong.

Had we listened to the medical advice we were given, Kevin would be dead. The doctor who gave us no hope and tried to force his viewpoint on us was wrong. Kevin did improve and has lived a useful life.

  • It is not up to others to decide which lives should be saved.

We’ve had the joy of seeing God intervene in Kevin’s case and restore much to him. But we would have fought just as hard for him had he never regained any feeling or function.  Once society begins to set a standard for humans to fulfill to be allowed to live, we are no better than Nazis. Because organs and medical treatment are at a premium, life has become a commodity to be doled to the most deserving.

When medical personnel make decisions based on the profit margin and a person’s perceived worth to society, a nation has lost its soul.

  • The term “death with dignity” is subjective.

Who gets to decide what constitutes dying with dignity? As a matter of fact, what constitutes living with dignity? When my mother was disabled by a series of strokes, there came a time that she developed pneumonia. The doctor decided not to treat her because, in his words, “Her life is useless.” He was going to let her die crying in a bed because he had made a judgment call about her worth. How dignified was that?

We insisted that he treat her. She recovered from the pneumonia and died some time later, peacefully, at God’s timing and with her family present. Her death, when it happened without duress, was more dignified than being forced to die at the doctor’s convenience.

  •  Parents should have the right to fight for their children.

In most cases, no one is going to care more for a child than his parents. It is their God-given duty to protect their child. A truly caring health care professional considers the well-being of the entire family. What could it hurt to allow them to love their little boy for as long as possible, and let God take him home?

  • If we don’t fight for the life of others, we will all become Charlie Gard.

Once life becomes worthless, once we have allocated to others the power to give and take the life of another human being, we are all at risk. Who knows when the standard will change again, and your life no longer rises to the new level of worthiness?

Today there are protests in the streets over the G-20 summit. In ten years no one will remember the G-20 summit. But who will fight for the Charlie Gards of the world?

Who will fight for the soul of the nations?

 

UPDATE: In the face of mounting international pressure, the Great Ormond Street Hospital has postponed removing Charlie’s life support for now. The hospital and parents will return to the European court to seek permission allowing Charlie and his parents to travel to the United States for his treatment.

The Vatican hospital, Bambino Jesus pediatric hospital in Rome, and the New York Presbyterian Hospital and Columbia University Irving Medical Center have offered to accept Charlie for treatment. New York Presbyterian Hospital has also offered to ship the experimental drug to the Great Ormond Street Hospital and provide advice on its administration if needed.

Both President Trump and Pope Francis have weighed in on the matter in Charlie’s favor.

 

 

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