This photo has stood sentry on my dressing table for as long as I can remember. It’s one of those cheesy shopping mall photos – the Christmas tree isn’t real, but the smiles on my boys’ faces certainly are. In the eyes of the one, I see the strength and assurance that comes with being the first-born. In the eyes of the other, I see the twinkle of mischief, and a giggle forming on the lips and I am reminded how good life is when you’re only two years old.

 

When I gaze into these two sweet faces, I remember a time long ago, a time of innocence and unbridled laughter. A time when each day was met with a smile and with expectation over what untold adventure the day might hold. These were the carefree days.

 

These were the days before they knew disease would knock on our front door and settle itself right in.

 

These were the days before they learned the sting of disappointment and betrayal.

 

These were the days before they experienced the loss and uncertainty that comes with moving far from the home they loved to live in a state or a country they had never experienced before.

 

These were the days before life got messy and complicated and they began to understand it in all its complexity.

 

These were the days of chubby hands and pinchable cheeks, and glimmers, always glimmers in the eyes.

 

Life has its way of taking some of the glimmer out of our eyes, doesn’t it? Experience the shock and gravity of disease, the weight of the burden of caregiving, the sting of betrayal, the fear of another failure or disappointment, for that matter, just experience grown-up life at all, and it’s understandable why our glimmer fades.

Last night, on a balmy August evening, I had the privilege of taking my sister’s family to the ballpark. All four of my niece’s children, ages 2 to 9, were there as well to watch the Phillies take on the Nationals. I saw the glimmer again – in their eyes. In every pair of eyes that looked back at me across the ballpark hot dogs and the cheesesteaks (we are in Philly after all!) I saw that glimmer of light.

 

 

Even in our Tyler’s eyes. Diagnosed with retinoblastoma at 2 months of age, and wearing a prosthetic eye since he was 18 months old, even Tyler, my niece’s son, was all a glimmer and a glow at the prospect of the joy of the evening before him. His life has been hard. Harder than most of us can imagine. And yet, even through all the surgeries and chemo and treatments and the discomfort that has accompanied all of it, Tyler’s joy is irrepressible.

 

And I remember my own son in the years after his diagnosis with type 1 diabetes at age 5. His joy was also irrepressible. Shots of insulin, multiple finger stick blood tests a day, food restrictions, soaring or plummeting blood sugars, a hovering mother – nothing seemed to phase him. I was the one who was a mess. I was the one who had lost the glimmer.

 

This morning, Tyler’s parents and my sister took Tyler for his now semi-annual appointment at Will’s Eye Hospital. They can speak casually about the complexity of the visit: removing Tyler’s prosthetic eye, inserting eye drops, and examining everything for signs of health or disease. And they make it sound so easy, so commonplace. But make no mistake about it; what they endure as caregivers is also hard. Harder than most of us can imagine.

 

Tyler will one day feel the weight of the lifetime effects of retinoblastoma on his life, even as my Austin feels the weight of living 24/7 with type 1 diabetes. But what always strikes me about children who suffer from chronic illness is their irrepressible joy. It is as though they have entered this world with a sense of the holiness of life, of the sanctity of life, of the joy of life, despite the trials that come their way that try to steal their hope. Although they experience such hardship at such a tender age, they refuse to yield to the fear of what might be and instead rest in the beauty of the moment that is.

 

They carry within them the solemn truth that life is sacred.

 

I love who my children have become, but, I’ll just admit it, I also miss who they once were in all their innocence and glimmer, because through their eyes, I could see that yes, life may be hard, but life is also beautiful. We will all walk through pain and hard seasons, but there will also be sweet times ahead. Life is short, and not a single day is guaranteed to us, so it is essential we seek out the sweetness in life and press in there.

 

Even with only one glimmering eye, we can see more of life’s beauty than we could ever see with two eyes that have lost their sparkle.

 

 

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