IN THE MIDDLE OF THE FIGHT

This blog first appeared on September 23, 2014, in Chicago Now. Columnist Mary Tyler Mom invited families to submit guest blogs for a series that ran in September to honor Childhood Cancer Awareness Month. Enzo was a patient of Dr. Jeffrey Greenfield and he is thriving today!

I’ll have my meltdown later. I’m not suggesting I haven’t cried real tears and really hard, or that I haven’t been terrified or that I haven’t cursed the world, but I’ve cried those tears in private. I’ve screamed and asked why in the dark when he is asleep and can’t see. Then I’ve pulled myself together and been “on” as much as possible throughout this horror that has been the summer of 2014. It started with my then 5 1⁄2 month old being diagnosed with a brain tumor after a simple wellness visit for a cough.

We were lucky. I see that now as I am knee-deep in a year of chemotherapy. There were a few days at the beginning when we didn’t know what kind of tumor it was, or if he would even survive surgery. We didn’t know if they would get the tumor out and if they did, would it leave lasting damage? Would he have a good prognosis or would it just prolong his life? I suppose we still don’t know, not really.

I say we were lucky because they got it all out: a TOTAL RESECTION. So far, there is no major neurological damage, and the 10-inch scar the size of a softball on my baby son’s head is not scary looking like I feared, but a thing of beauty, because that scar saved my son’s life.

The hazy days of “will he be ok?” and surgery after surgery not knowing what we were dealing with were almost easier than the year-long battle that is chemotherapy. Then, we were in a bubble. We lived in the Pediatric ICU and had minimal contact with the outside world. Then, it was all about Enzo all the time. There wasn’t room for anything else. We couldn’t let our minds wander and imagine future scenarios because we had only one focus; and that was getting this tumor out and figuring out next steps.

But things settle, day-to-day normalcy comes back, sort-of, and the real juggling act of emotions begins. I’m guessing every Cancer Parent knows what I mean when I talk about having to be “on.” We all find strength we didn’t know we had and put on brave happy faces for our unbelievable little soldiers facing this battle everyday.

What I’ve found is the only way to keep on keeping on is for your Mom-ness to bleed into all relationships. What I mean by that is, I find myself protecting everyone around me from the scary reality that is our everyday life right now. “We’re great!” “Enzo is having a great weekend!” “He’s hardly been nauseous at all this time!” Even my CaringBridge posts read like a daily trip to Disneyland. I don’t want to burden people with the details of how certain drugs make him gag and vomit; how my husband and I take turns watching him sleep on nights he has the overnight IV hydration bag; how I longingly look through pictures to remember what he looks like with his eyebrows; how I sing “You are my sunshine” to him every night as I rock him to sleep, but ever since ‘THIS’ happened, I can’t bring myself to sing the last verse, “Please don’t take my sunshine away”… so I hum it.

Keeping that strength for him makes me keep it up for others, not on purpose, but out of habit and necessity. When friends and family—the people I love the most and who love me—ask how I’m doing, I don’t want to break their hearts by telling them how I really am. How I can’t believe this is my life and this happened to my perfect little baby, or how I trudge through every day in a fog wondering if this is all real, and how every morning when I wake up I remember that reality all over again. Everyone wants to help and everyone is amazing in their love and support, but if I start to answer the “How are yous” truthfully, it would break me. So I lie and say things like “we’re hanging in there”, “he really handles chemo well”, and “Enzo is a trooper”, etc. It’s to protect them. That’s the mom mode: protect Enzo, protect everyone, get through this year and don’t cry. It makes people sad to see the Cancer Mom cry. So I put on a brave face for the world, and everyone marvels at my strength and how I am holding it together and inside I am thinking “HA! if only they knew…”

If only they knew how hard it is not to cry as we line his rocking chair with towels for the days immediately after chemo, or as we pad his bed with hospital “chucks” and towels, too. I force myself not to cry as I breastfeed him upright to lessen the chance that he will vomit, and when he does vomit, I don’t cry as I perfect the “catch” move that I developed so it doesn’t get all over the place, just all over me, and my husband swoops in for our all too familiar routine of cleaning. He takes the baby, I strip and wash off, new towels, new clothes, try again.

He’s a baby. He doesn’t understand what’s happening and when he sees us smiling, he smiles. Even though his first year is nowhere near what we imagined, he’s happy because we sing and we dance and laugh all for him, even when we feel like crying. And even when he feels like crap, he still giggles, and it’s all worth it. Like I said, I’ll have my meltdown later.

UPDATE — NOVEMBER 2020: Enzo just turned seven in November and is an energetic first grader. He loves all things dinosaur and has made his bedroom a shrine to Jurassic Park. He jumps, he plays, he’s loud, he’s funny, he’s amazingly inquisitive and we feel so lucky every day for the amazing team of Drs. Jeffrey Greenfield and Mark Souwedaine.