Written By:  Kathy Glow @ Kissing the Frog

When my husband and I were first married and would attend mass on Sundays, we would always find ourselves behind a couple who had five sons. I would nudge Rick every time and say, “FIVE boys…that’s my nightmare.”

I eventually learned that the mother of these surprisingly well-behaved five boys had suffered through cancer and had lost a leg. My new thought became, “Cancer…that’s my nightmare.”

Flash forward seven years: we had four little boys under the age of six. They were busy and loud and dirty; and even though I adored them, I was going out of my mind! Their energy, their movement, the chaos they created was becoming overwhelming to me in a way I had never imagined. That spring I often found myself praying for a change, something that would help me to be a better mother.

That change came on Wednesday, April 22, 2009. It was a change I never imagined happening to my family or to one of my children. And it was definitely not the change for which I was asking.

It was Earth day. Our oldest son, Joey, and one of our five-year-old twins, had planned for all of us to go on a picnic to a local park. We would eat lunch, pick up trash, and play. He was sweet like that. A lover of the Earth and animals, he always had a planned activity up his sleeve and a hug for everyone.

Finding it odd that everyone was awake but Joey, I went into his room. He was still in bed and had thrown up on the floor next to it.

I attempted to wake him and ask him if he knew he had thrown up on the floor. His answers were slurred and groggy. He couldn’t seem to look at me, instead, looking off to the left of me. His body was jerking in a way I had never seen before.

It slowly dawned on me that something was seriously wrong. Panic seized my heart, and I realized I needed to call an ambulance. The minutes that I waited to hear the sirens approach my house were agonizing as I watched my son seize and spasm.

Soon, the paramedics arrived and swarmed in – four from the fire truck and two from the paramedic truck- and began to work. First was a barrage of questions for me: did he have any pre-existing medical conditions? Could he have ingested anything? Had he recently hit his head? Had he recently been ill?

The answer to all of their questions was no, nothing was wrong with him. I felt sick to my stomach, and I just wanted them to tell me he was okay.

In a blur, there was an ambulance ride, an emergency room, a doctor asking me more questions, and a CAT scan.

And then, “Bad news, it’s a tumor.”

At that moment, my nightmare became a reality.

In the twenty-four hours that followed, we met with a neurosurgeon and an oncologist. Joey underwent surgery to biopsy the tumor; and after three days in the Pediatric Intensive Care Unit, we received the news that every parent fears: Your son has terminal brain cancer.

This is something no parent sees coming. Three weeks before his seizure, he was a happy, energetic, creative child with a clean bill of health from the pediatrician who had performed his kindergarten check-up. But yet, there were the excruciating headaches he had suffered at least three times, so severe
that he had vomited each time. I wrote them off as migraines or allergies and was just getting ready to call the pediatrician about them.

But obviously, it wouldn’t have mattered. The surgeon surmised that the tumor had probably been growing shortly after birth. The oncologist encouraged us to sign a DNR, and surmised that Joey probably wouldn’t make it through the summer.

When Joey was released from the hospital, we went on that Earth Day picnic that he had planned. In fact, we scrambled to do a lot of things we’d been meaning to do. We made videos and took pictures and went on vacations. All should have been happy and joyous events, but an angry cloud of dread was
hanging over us.

That summer, Joey completed six weeks of radiation and began chemotherapy and steroids. He endured countless needle pokes, medical procedures, and hospital stays. I was with him every step of the way. He barely complained at all.

But he was changed. He wasn’t the same Joey I had the joy of raising for five years. Gone were his infectious giggle and ever-present smile. He lost his desire to play, to plan games, to go to school. The cancer beast had robbed him of his “Joey-ness.”

Joey survived well past that summer, and even attended kindergarten until April of 2010. Sometime in May, the doctor told us there wasn’t anything else she could do for him.

I refused to leave his side. I spent as much time as I could, drinking him in. I stroked his cheeks, fat from the steroids. I ran the tip of my finger along his beautiful long, blond eyelashes, which were one of the first things I noticed about him after his birth. I took pictures of his big, beautiful feet. I kissed his
plump lips. I stayed with him, singing to him and talking to him.

Joey lost his cancer battle on June 10, 2010. He was just six years old. Rick and I were with him as the last breath of life left his body. A huge chunk of my heart left with it, and like Joey, will never return.

That summer, there was less laughter and exuberance in our house. Joey’s three brothers didn’t seem to know what to do without him. I feared his dad and I wouldn’t know how to be happy after the loss of our precious child. I felt like our family was shattered and broken. I wasn’t sure how we were all going
to go forward.

But then, three months later, I learned I was pregnant.

Part of accepting Joey’s death for me was to give away all of my baby and maternity clothes. I had turned 40 that May, and had worked hard to wrap my mind around the fact that I would have no more children.

I didn’t want the baby. I was terrified that something would be wrong with it. I prayed that I would have a miscarriage. I pleaded with God, Just please take it away. I can’t handle any more heartache.

But on June 23, 2011, one year and thirteen days after we lost one precious son, we welcomed another.

Evan Joseph has helped us all to feel happy again, to laugh again, and to delight in life once more. I didn’t think I could ever love another child the way I loved Joey, but I am beginning to see the unique gift that we’ve been given. With Evan, I received the change I asked for: a change in thinking that life has to be neat and perfect and predictable. A change that tells me that happiness can be found in a life that is chaotic and flawed and tragic. We can find happiness and joy in small moments because those are the ones that really matter.

I’m heartbroken that Evan will never know Joey. He will never hear that infectious giggle or be wrapped in one of Joey’s amazing hugs or play a game of Joey’s creation. But in him, I see qualities that Joey had, and I can’t wait to tell him Joey stories.

I try to shake off the nightmare that became my reality, and I force myself to think positive thoughts about the future. I think about the brothers who have each other and their memories of Joey. And while they may have faded with time, I think they will grow stronger with each story they tell Evan.

We are going forward with our lives because we have to. We are going forward as a whole family, with the memories of our precious Joey as our guide.

Read more from Kathy on her site:  Life with the Frog