Wide Awake: Colin – The M.I.P.
A mom shares the story of her Most Important Patient
By Marianne Aleardi

Some of the most beautiful writing I’ve ever read came from a mom on Facebook. I don’t know her, but I’ve watched from afar as she battled through her teenage son’s cancer. Somehow, every word she wrote took me with her. 

This mom I never met spoke so honestly about her experiences that it was shocking at first. She held nothing back: life was awful, it was unfair and it was a battle every day. She was real. And it was brutal.

Her son was 14 when he was diagnosed three years ago. He was a patient at CHOP and spent way too many days with way too many doctors in the hospital. Day after day, I would read about a new symptom, a new pain, a new test and a new treatment option. It was never-ending.  

Colin’s mom posted many photos, often from their hospital room. Colin usually wore a knit hat pulled halfway over his eyes. Even in a hospital gown, that hat made him look like a typical teenager. But you could see how sick he was, how much pain he was in, and how many doctors and machines were needed to keep him alive. One black-and-white photo she posted was of him sitting in his bed, looking straight at the camera. She wrote: “Don’t look at this and think that poor child…See Colin and all that he is. Much more than his situation.” 

Some mornings I would wake up, open Facebook and read about the harrowing night they just had – the intense pain Colin experienced and how this mom sat with him from 2 to 4:30 am as he writhed in pain. The painkillers did little, and she felt helpless. I would picture this woman in the darkness of night trying to help her child who was suffering. There are few things worse than that. 

She wrote, “I am learning the extremely hard way that a parent can’t fix their child. Or make them happy. Or take away the hurt. Or make life better. I can just love him hard and fast and a whole lot.” 

It’s funny, while I never met Colin or his mom, I remember when he went to prom. I remember when he got to fly on a private plane to the Super Bowl. I remember when his mom ordered a custom pair of Vans sneakers in Spider Man colors, his favorite super hero. And I remember how long it took me to find a funny greeting card to mail to Colin when his mom asked for them. She specified happy cards, and I spent days looking for a card I thought might make him laugh, just for a second. 

Then in April, Colin’s problems seemed to multiply. Colin was intubated, and his mom wrote about how she wondered and worried if she was doing what was best. 

“I would literally let them cut my left arm off if it meant I could then understand what he is saying to me with his eyes…To be able to ask him, Colin have you had enough? Are you done with this fight? Because if what he needs is me to take his hand, hold it and walk him to the other side, give him a kiss on the cheek and turn around and come back alone, I will do that for him.”  

A few days after she wrote that, Colin typed on an iPad, “I am done,” and he was taken off the ventilator. He passed away a few hours later.  

Sometimes when I would talk to friends about this Facebook page, they would question why I was following a page so sad. I would tell them I wanted to share this mother’s pain to maybe ease it for her the tiniest bit. I know that sounds weird, but I hoped if she and Colin understood that the thousands of people following them truly cared about what was happening, it might help somehow.   

Colin’s story helped me. Because on those mornings when I woke up and my children hadn’t been in pain the night before, and on those days when I wasn’t rushing a child to the hospital, I knew some people were. Colin’s story taught me that many families are living through unimaginable pain. His mom’s  messages taught me we should find the joy in life anyway.  

“You have the gift of waking up each day. Don’t be so lulled by the monotony of life that you forget how fragile, how special and most importantly, how fleeting this amazing life you get is. Somehow we forget we have the power to do all of this, every single day.” 

June 2018
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