Life Matters: Why Charlie Gard Is A Lesson For Us

Guest Contributor Allen Ray

I still remember the look in their eyes.

They were overwhelmed by the turnout as they shook hands, hugged, smiled and laughed with each guest as they entered the building. They were truly grateful for the support, and continued to bravely engage in the festivities held solely for their family. Yet, the smiles and laughter could not hide the pain and desperation the last few years had permanently etched into their eyes.

The eyes are the windows to the soul, and their souls were temporarily trapped in a hell-on-earth that only a parent mourning the loss of one child, and the eminent demise of another could possibly endure.

The rare disorder had taken the first twin a year prior, and the young lady in the wheelchair needed massive doses of medication to keep her alive every single day. Alive could barely be the correct word used to describe her condition. The poor child was trapped in a hell of her own; unable to walk, talk, sit up straight, or basically do anything but make a few meager facial expressions and gargle in a feeble attempt to communicate. But, alive she was. And, as long as the young parents could detect the faintest of breath from her lips, there was hope for her survival.

We were there as the evening’s entertainment. “She really loves you guys, and gets so excited when we play your CDs,” the parents explained. I sat next to the girl, feeling awkward as I often do in many social situations. I reached out and touched the child’s hand, careful not to squeeze in case I break a bone in her fragile body. Much to my surprise, she grabbed my hand and rocked back and forth in excitement.

“She’s excited to see you guys tonight,” her mother beamed. “We’ve been telling her all week!”

That was her interpretation of the movement, and who was I to argue? I couldn’t say one way or another, but I did realize one thing; that child was very much alive, even if she was trapped in a frail shell of a body.

At that very moment, I was changed for life. I began to understand the battle this young couple was fighting, and the extremes they would go through to keep their child alive at any cost, being a young father myself. The rest of the night was a blur. I suppose we had a good show, but my mind was miles away. My kids were there with us, running around on the dance floor, yelling and laughing, dancing and singing along. The young girl in the wheelchair moved to the music as much as her tiny body would allow, until she was simply too exhausted to move. The person who won the 50/50 drawing donated his part back to the family, to the cheers of the audience. I asked my wife to write a check for as much as we could afford at the time, to which she gladly agreed. Apparently, several people in the crowd were moved to do the same. Beyond that, I don’t recall much more than my thoughts and feelings that night, because I carry them with me to this very day.

After that night, I found myself being more patient with my kids. Hugging them a little tighter, laughing with them more, and listening to their wild stories with interest. You see, a thought had occurred to me that night; that couple would have gladly given their lives just to watch that little girl rise up out of that wheel chair, run across the room, and clumsily tip over a lamp. They would have given every earthly possession just to hear her say, “I love you, mommy,” or ask “Daddy, can I get a toy?”  They would have sold their souls just to watch her perform in a school play, or sing in a Christmas Pageant. But they knew that was never to be. The young lady never made it to her next birthday. We got a simple card thanking us for our contributions that kept her alive for a small amount of time, and a handwritten note to ensure us that they cherished every single moment with her. My heart was torn apart.

This is why the Charlie Gard case disturbs me to the core. It is a parent’s basic instinct to fight for their child….until the child literally draws his or her final breath. To hand over this battle to a state, no matter how well-intentioned said state claims to be, defiles a basic right of a parent that dates back to the arrival of the very first infant. This is why I decried the arrival of government-run healthcare in the United States. It discourages me even more that I simply do not hear the question being asked, “Does this give the Government too much power over the individual?”

The answer is a resounding “Yes, it does!” The Charlie Gard tragedy is all the proof one needs to reach that conclusion, and now that power is being stripped from us. The parents who tend daily to a child with special needs will attest to this. These are the ones who fight this battle, and need the freedom to keep their child alive when everyone else has given up. It is their prerogative, not the decision of a cold, heartless bureaucrat in an office several miles away, to fight or surrender in the best interest of the child. To deny them this is to deny them a basic freedom that our forefathers warned us would be taken away if we allowed it to be.

“Guard with jealous attention the public liberty. Suspect everyone who approaches that jewel…” -  Patrick Henry