I am a mother, a wife, a friend, an author, and a teacher. I never thought when I grew up I’d be the mom of a kid with cancer but hey…look at me now! As I look back over the years since Josh’s diagnosis, (I’ve been doing that a lot lately mainly to prepare myself because we’re facing the possibility of living through the nightmare again) I wonder how things could have been different. Would we be the same people? I know we wouldn’t but I can’t help but wonder if it made us better, stronger people or if the effects were damaging beyond repair.
A child with cancer changes the family dynamics in a blink of an eye and you don’t even see it coming. At the time of Josh’s diagnosis (2003) he was 2, Jared was only a month old and Jake was 3 ½. Brain cancer…welcome to the family! Oh, and fuck you!!!
The changes happened fast but at the same time so slowly that, at the time, I didn’t notice. Admittedly, I was living in a fog. I’m not sure I would have noticed if my oldest had found a way to purchase his favorite dinosaur (Therizinosaurus) and have him delivered to our front door.
Life is often extra difficult for the healthy siblings. I remember thinking that Josh wasn’t going to have the chance to grow up. I didn’t think he’d go to kindergarten (every study I read had him dying before the age of 5), make friends, play sports. And I was afraid the effects would leave my oldest child a shell of who he was meant to be. But I never hid anything from them. I was honest even when it was difficult. My oldest (he’s too smart for his own good and now at 17 he’s way smarter than me!) pieced a few things together by the time he was 4. “So, if grandma died of cancer, then Josh can die?” he asked. It was information he was asking for but not ready to handle. But I had to tell him the truth. By then, we’d already lived through at least 3 kids not returning to the clinic for treatment and to play because they lost their battle before they began.
Some parents spend most of their time caring for their sick child. I was determined to save Josh (so far, so good and I’ll never stop fighting) and keep my other two boys as psychological intact as possible. Great idea but easier said than done.
I guess I’ll never know how much of their personalities were predetermined by nature and nurture and how much was altered by Josh’s diagnosis. Maybe Jake still would have suffered from anxiety even if Josh was a normal, healthy kid. Maybe he would have vomited before every basketball game, cross country race, and track meet, needing to reach an intrinsic level of perfection that is difficult even for an adult. He’s the first born, so the need to protect his brothers falling on his shoulders could be standard issue. Maybe he still would have a 4.5 weighted GPA and be a rule follower. No maybe none of those things would describe him.
It’s possible that he feared he had caused his brother’s cancer or that he might catch it, like every cold they shared. I know he worried (and still does) Josh could die. He might have felt guilty for being healthy when his brother, his best friend wasn’t.
I know he felt sad for Josh when he was sick. Jake would stand in the apartment window across from NYU, while Josh was in isolation for three weeks, and ask me which window was his. He would have adventures throughout NYC during the day and each one that ended with a new toy for him, ended with a new toy for his brother that he’d send with me to give to Josh. He was kind and caring and learned empathy through the process but I know he was sad that everything in our lives had changed. He grieved the loss of our previous normal family life and his carefree childhood.
Then there’s the baby. The last born who should have been the third, not the last. I wanted one more. One more try for that elusive girl. That never happened. So now, as a teenager, that baby is carefree and agreeable. He never makes waves, never complains. He does whatever his brothers want and has never once caused us any trouble. Would that be his personality if he had known what life was like before cancer stormed in? Maybe. Maybe he’d still be in the driveway shooting baskets to perfect his three-point- shot. Maybe he would have still made National Junior Honor Society. We’ll never know. He’ll never know. He’ll never know what it’s like to grow up without a care in the world.
Now, what about Josh? Children often don’t understand their emotions in the best of circumstances. They may not have words to describe how they feel or want to upset their parents by admitting how scared they are. Josh was so young when we found his tumor. He doesn’t remember a lot of what he went through. Thankfully, because of great people, he thought he was going to a playroom to hang out and leave with prizes. That’s what he remembers. Not the port they implanted in his chest to access for four rounds of chemo or the tubes they replaced that port with for his stem cell transplant. He doesn’t remember his internal lining shedding or the tube they put up his nose and down his throat to administer a chemo he couldn’t swallow in pill form.
He might not remember those events but they have shaped him into the person he is today. Surprisingly, he’s my most outgoing and charismatic. He’s the ladies’ man that has had a girlfriend since the 5th grade. He is strong-willed and determined, he fights for everything he gets. Every A in school so he can take advanced placement courses like his brothers. He works harder than others to play basketball at a competitive level. But the trait that has both served him well and will continue to do so is also a trait I wish he wasn’t forced to acquire. Josh is the most mature, mentally strong person I know. I have watched him walk himself (I carried him into the first but now he’s taller than me by at least 6 inches) into two brain surgeries and lay on the operating table waiting for the drugs to kick in. I watched him rehab after his surgery a year and a half ago to come back onto the court stronger than he was. Today, only eight days after his 3rd surgery, I watched him leave for school.
So, in the next few days, as we wait for pathology reports, I’ll reflect on my family’s dynamics. I am a mother, a wife, a friend, an author, and a teacher. Of course I never thought I’d have a child with cancer but that’s life, messy and raw. I will always wonder if things would have been different if Josh never had that damn brain tumor in 2003, if scar tissue hadn’t grown back after twelve years and if he hadn’t needed “something” removed a week ago. Would we be the same people? I know we wouldn’t but I truly hope that in the long run it made us better, stronger people.
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