When Hubby and I were first married and would attend mass on Sundays, we would always find ourselves behind a couple who had five sons. Even though I wanted a big family, I would nudge Hubby every time and say, “FIVE boys…that’s my nightmare…five boys.”
I eventually learned that the mother of these actually very well-behaved five boys had suffered through cancer and lost a leg. My new thought became, “Cancer…that’s my nightmare.”
Five years ago this month, my nightmare became a reality when my five-year-old son was diagnosed with an inoperable brain tumor.
In the spring of 2009, I was four-fifths of the way to my perceived nightmare. I had four little boys under the age of six…and I was going out of my mind! Not that I would have ever admitted that to anyone, because, after all, it was my choice to keep having babies. But their energy, their “busy”ness, their movement, everything was becoming overwhelming to me in a way I had never imagined. In the weeks leading up to the diagnosis, my nightly prayers would include, ‘God please, help me, let something change so I can be a better mom.’
Things did change, but in the worst possible way.
The morning of Wednesday, April 22, 2009 was like any typical morning at our house with toaster waffles and Playhouse Disney on in the background. That week, everyone in my house had been sick with a tummy bug, so my nerves were already frazzled. My oldest was still in bed; so I figured it was his turn to be sick, and I let him sleep. While my 15-month-old was busy destroying the house, I was packing lunches for an Earth Day picnic my oldest suggested we take.
It became later in the morning, Playhouse Disney was still on, every kitchen cabinet was emptied, and Lil’ C was throwing tantrums. As I took him upstairs to his bed for his morning nap, I realized that one of my five-year-old twins, Joey, was still in bed. He had been up and been to the bathroom, but had returned to bed. At some point, he had even thrown up on the floor next to his bed.
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, and was instead looking off to the left of me. And his body was jerking in a way I had never seen before.
It slowly dawned on me that something was seriously wrong, so I called Hubby at work. Choking back tears, I said to the receptionist, “Can you get him? I think there’s something really wrong with our son.”
He came to the phone right away, and as I described what was going on with Joey, Hubby slowly suggested maybe I should call the pediatrician. I kept talking and kept watching Joey’s vacant stare and jerking body, and I realized, I have to call 911.
The minutes that I waited to hear the sirens approach my house were agonizing, but 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, except for the last one. They concluded that it was probably a febrile seizure. That brought me temporary relief; but then again, I knew he hadn’t had a fever.
My dad arrived to watch the other boys while they were putting Joey on the stretcher, and I was relieved I could ride in the ambulance with him. I remember thinking I wished I had my camera because Joey would get a kick out of his ambulance ride once he was better.
En route to the local Children’s Hospital, the EMT and I chatted about our kids and preschools until Joey’s seizures became worse, and the sirens were turned on. At this point I knew there was something more seriously wrong with him.
Once at the hospital more questions: Had he hit his head? Yes, I decided to tell them about his hard fall three months earlier at hockey skating lessons. That had to be it, right?
Please let that be it.
He was taken to get a CT scan, and then, in deadpan, the ER doctor said to me, “Well, bad news, it’s a tumor.”
My mind immediately started racing. I could still hear the doctor talking, but it was as if he was at the end of a very long tunnel, and I couldn’t make out anything he was saying. Instead I was thinking, We’re supposed to be on a picnic for Earth Day right now, a picnic Joey planned. We were going to clean up the park. How does a little boy who can plan that have a tumor?
“How does a five-year-old get a brain tumor?” I blurted out. The doctor didn’t respond. He just turned his attention on Joey once again.
I called Hubby at work and blurted the news to him. There was a millisecond pause, as if he was trying to wrap his mind around it before he said, “I’m coming.”
People tend to say that rapid fire, stressful events “were a blur,” but I remember every agonizing moment after this. I remember meeting the neurosurgeon, waiting for the biopsy, the details of Joey’s ICU room, the parade of nurses and residents, the exact way my stomach felt and how my knees buckled under me when we learned his cancer was inoperable, terminal.
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 gotten 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. Obviously, it wouldn’t have mattered. The surgeon surmised that the tumor had probably been growing shortly after birth.
That day five years ago changed our lives forever. Joey lost his battle to the cancer beast on June 10, 2010, so that “crapiversary” is upon us as well. He was just six years old. I feel like there is less laughter and exuberance in our house. I feel like Joey’s brothers don’t know what to do without him. And sometimes I feel like his dad and I don’t know how to be happy without him.
Three months after Joey died, I found out I was pregnant again. I was scared to have another baby. I didn’t think I would be strong enough to handle it, but I was. In many ways, this little baby has healed us. He is a tiny little Joey reminder for us, and perhaps the answer to my prayers for something to change. Without him, I am certain I would still be in the deep depression that I suffered after Joey’s death, and my family would be even more shattered than it already has been.
I can’t really say if losing Joey has made me a better mother or not. It does make me more conscious of the things that used to trouble me. Messes on the floor, noise, broken toys, lost shoes, and general chaos don’t bother as much anymore. Today, the perfect family is about love and laughter and remembering that we have each other right now, in this moment. I choose to find happiness in small places and instances because those are what really matter. There will always be an ache in my heart where I miss my sweet boy, but I force myself to think positive thoughts about the future. I try to ignore the feeling that the family that grew out of my dreams – the family that was once picture perfect to me – has been shattered irreparably.