September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Kathy Glow
It’s difficult to wrap your head around the fact that your five-year-old child has an inoperable brain tumor when just one month earlier he was giving you a minute-by-minute summary of his Kindergarten Round-Up.
It’s impossible to describe the feeling of sitting across from a pediatric doctor who tells you that your son is going to die when just two months earlier he was given a completely clean bill of health by another doctor.
It’s inconceivable to think about signing a “Do Not Resuscitate” order for your oldest and most dearly wished for son because you want to believe that he can somehow be cured – will be cured – of the beast that has inhabited his brain.
But the horrifying and sad fact is that more families than just mine have experienced these same difficult and impossibly inconceivable realities. I falsely believed when Joey was diagnosed that we were the only people who had ever had this happen to us; that somehow, through some fault of our own, we had caused this to happen to our child.
I was the mom who longed for a houseful of children; yet when they were finally all here, I was overwhelmed and unappreciative. I had healthy, vibrant, fun-loving sons; yet I couldn’t see the forest for the trees. I didn’t understand that life need not be perfect for it to be wonderful.
And then Joey got sick, and that all changed. Some of our best and most wonderful memories were made while Joey was battling cancer. Let me first say, Joey was a hilarious kid. He had a constant grin on his face, he loved to laugh, and silliness was the name of the ever-changing game for him. He loved to pretend and make up games and everyone was included. He was a horrible hide-and-seek player, though. Since he loved attention, he would yell out the seeker’s name so he could be found first.
After the initial grand mal seizure that took us to the hospital and led to his diagnosis, he changed, though. To strangers and to the doctors and nurses who would care for him, he was still a sweet and funny child. But we knew his energy was gone. The constant motion, the ideas, and the giggles were more infrequent. I think that’s what broke our hearts the most about this horrible disease. He was a shell of his former self.
Every once and a while, we would see glimpses of the old Joey. The day he came home from kindergarten and asked us if we wanted to see what he learned that day, we were thrilled. He had been sleeping in the nurse’s office for the good majority of each school day. When he very carefully placed his beloved stuffed cat, Stripey Kitten, on top of his head and balanced her perfectly there with his tongue sticking out of his mouth and said, “Ta da!” we had to laugh. No, he wouldn’t be learning anything beyond kindergarten, but he was still thinking of silly ideas to get attention.
The Christmas holiday came, and we were so concerned about making a lasting memory for all of us. But Joey was the one who gave us the most precious one. He performed and sang “Jingle Bells” using a harmonica and a set of sleigh bells that his little brother had gotten for a gift. He delighted both sides of the family with an identical performance and soaked up the attention. Just when we thought his personality was gone forever - that the brain tumor had stolen it all - he would say or do something or show one of his trademark huge grins. Even his last request, strawberry ice cream, was so Joey.
Like every mother who has lost a child, I wonder. I wonder what Joey would have been like. I wonder who his friends would have been or what kind of grades he would have gotten in school or what activities he would have enjoyed. I mostly think that because of the kind of person he was in his six short years of life, he would have grown up to be someone amazing. Surely he would have changed the world.
And then I think that I am letting him down. I am letting him down because I don’t strive to avenge his death. I haven’t started a foundation or written letters to congress or spearheaded fundraising efforts or even run a 5k for cancer research. I haven’t attended rallies or walks or special children’s cancer events.
The reason is because even four years after his death, it’s just too hard. To remember what it felt like to wake up every day wondering if today would be the last, to look into the bloated faces of small children on steroids, to see the forced smiles of their parents and the loving attention from the children’s siblings is just too hard. It just hurts, because honestly? I still think about it every single day.
I realize Joey probably wouldn’t have changed the world. Maybe he would have been some ordinary, average guy. But one thing I know is that he would have always made people laugh with his silliness and his willingness to try something goofy or put himself out there. So I think maybe that is how I am going to help this cause. I’m going to tell Joey’s story with love, laughter, and honesty. I am going to make other cancer parents feel understood and comforted; and make them realize that they are not the only ones going through something hard, and it is not their fault. I am going to show people what it’s like to experience the unthinkable happening.
And I’m going to share Joey stories – good, bad, and funny - because I think he would have loved that. I think he would have loved being the center of attention – making people smile, laugh, or even cry. He would love that to be his legacy.
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Filed under: Childhood Cancer Stories 2014