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. 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 had lost a leg. My new thought became, "Cancer...that's my nightmare."
Two years ago Friday, my nightmare became a reality when my five-year-old son was diagnosed with an inoperable brain tumor.
Two years ago, 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.'
And things did change, in the worst possible way. The beautiful family of four that I had always wanted was shattered forever.
The morning of Wednesday, April 22, 2009 was like any typical morning. My oldest two didn't have preschool until the afternoon, so breakfast was a lazy feast of waffles and Playhouse Disney. 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; 'his turn to be sick,' I was thinking to myself, as I let him sleep. While my 15-month-old was busy destroying the house, I escaped to Facebook.
It became later in the morning, Playhouse Disney still on, every kitchen cabinet 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.
'Great,' I thought, 'more shit to deal with.'
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. 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 realized, 'I have to call 911.'
I hung up with Hubby and dialed.
The minutes that I waited to hear the sirens approach my house were agonizing. But thankfully, Lil' C was asleep and Slim and Knox were zoned out on the t.v., so I could concentrate on Joey and manage somehow to call my dad to come and watch the other boys.
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 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 - what I later learned were grand mal - seizures became worse, and the sirens were turned on.
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?
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, interrupting the doctor. I couldn't wrap my mind around it. 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, but obviously it wouldn't have mattered. The surgeon surmised that the tumor had probably been growing shortly after birth.
That day two 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 three 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.
We go on with our lives because we have to. We find happiness in small places and moments because those are what really matter. I try to shake off the nightmare that became reality, while being paranoid about so many more aspects of my sons' lives that I never was before. I force myself to think positive thoughts about the future, while sometimes feeling as if the family that grew out of my dreams, the family that was once picture perfect to me, has been shattered beyond repair.
