What does life mean to you? Does it mean air, water, food? Or do you think it is intangible, such as love, happiness, and pride? Regardless of what you or I define life as, it ultimately ends up with the exact same conclusion. Life is everything we think it is. Life is all around us. Life is all of us. We love ourselves and everything and everyone that surrounds our lives.
Now take this life we are engulfed with. You see it all around you. You feel it all around you, sometimes taking it for granted. More than sometimes, we all admit. The smell of fresh cut grass or a new rain fall. The sounds of chirping baby birds in the backyard. The silence of the darkness when you are away from the city. Life. We love it, we appreciate it, we need it.
Suddenly your life is thrown into a sudden panic free fall. Your child is diagnosed with cancer (or any life threatening illness). Your personal life no longer has meaning. Your only concern is for one person and one person only, your child. YOUR child. Nothing matters anymore. NO ONE matters anymore, except one person. Your child. You no longer notice the smell of fresh cut grass. You don’t even notice birds singing as you walk to your car. You only notice one thing. The one thing that completes your life. Your child.
I admit, not everyone whose child is diagnosed with cancer or an illness will agree with me. I am speaking of my experience, and I am sure of many other parents’ experiences. I felt nothing except fear. Fear of losing of son. Fear of my son feeling fear. Fear of failing him. For DIPG, there is no hope. We were not the lucky ones to have the “good cancer”. That saying alone disgusts me. “Good cancer”? Is there such a thing? If there is, we weren’t the lucky ones. DIPG gives you zero hope. You know there is nothing, NOTHING anyone can do to save your child. So you sit and watch your child. Watch the life you know so intently slowly get stolen. The life that once was full and joyful, is now hollow and saddened.
So life changes in an instant. Life becomes deeply entrenched in the life of syringes, medication, medical terms, doctor visits and radiation treatments. Life is about ensuring your weak child eats even one or two bites of any food, even if it’s a fast food burger you never let them have before. Life is about begging and pleading your child to take even one sip of water so you don’t have to put the nasogastric tube down their nose. Life is sitting wide awake next to your child, watching them breathe slowly in and out, wondering when that last breathe will come. Life is……. forever changed in that instant.