I hadn’t expected to cry while cooking up lunch yesterday.
I guess if I am honest the feeling, the hot tears, are always only a couple of thoughts away. Like the other day at Ozo when I heard the gentleman tell the mom of two young kids, “I know it’s cliche, but it really does go so fast.”
There I was perfectly fine, then crying in to my late over a sentence in a conversation between two strangers that I had barely overheard. So yeah, the tears are always at the ready, but despite that slip up, I’ve gotten much better at when to access them. It’s not to say there is an appropriate time to spin out about your child having cancer. I think the diagnosis more or less allows you permission to spin out whenever you damn well please. But there is something to be said for not crying at inopportune moments.
Like the time shortly after diagnosis when I was at the dentist. It felt such an insane place to be. My son was dying and I was getting my teeth cleaned? But there was one tooth that had been bothering me and I was worried for a cavity. So dentist looked and I stared at the surgical light above and finally he said, “Well, there is no cavity, your teeth look great, but there is a bit of recessed gum around this one. That’s usually from grinding at night, usually from stress. Is there anything in your life particularly stressful right now?”
He asked so matter of factly, like he just wanted the data that I didn’t have time to formulate an answer. Flood gates opened and tears fell faster that I could stop them.
“Oh, um, yeah, I, um, well, my son, he, um, oh god….” I gasped as I lost my breath. I hadn’t yet said it out loud. “A couple weeks ago my son was diagnosed with cancer.” The room went silent, as rooms do when such things are said. I was reclined fully back for the oral exam, staring at the surgical light. The whole face exposed to what that truth would look like coming out of me. The dentist on one side, and the hygienist on the other, I couldn’t very well wipe my own tears, or even just move away and casually brush off the gravity of what I’d said.
I’d said it aloud and doing so made it feel even more true.
“Oh, sweetie.” The dentist replied. The tenderness of the phrase made my chest tight.
Exactly, if I can still be referred to as a sweetie then I am entirely too young for this. Pass the cup. This cannot be mine to bear.
I gave up completely trying to hold back the tears and just let them fall swiftly out of the corners of my eyes and the hygenist wiped them away.
“Ok, well, don’t worry about this then. No cavity, nothing to do here. You just go home and take care of your baby.”
Anyway, I’ve been able to stop crying in those situations for the most part. The situations where someone asks you something and the truth, well, the truth would cause the hot tears and the silent room and so you just lie.
“How are you guys?”
It’s a funny thing to both want to scream out every time I have the chance about Leukemia and also never ever ever have to tell anyone again that my son has cancer.
An acquaintance of mine put on Instagram yesterday that she got a break from the hospital (where her cancer kid currently lives) and went to dinner with her husband and other infant son. She posted a picture of everyone smiling and naturally I asked her if while at dinner she felt the urge to tell anyone and everyone who possibly dared remark about her cute baby, “I have another son! My life isn’t perfect! It’s actually impossible! We are smiling, yes, but this is all too much!!”
And naturally she replied back, “Exactly.”
Anyway, back to why I was crying making lunch.
Lindsy has been my friend for almost 2 years. Her son was diagnosed a year, almost to the day, after Beau. And even more interesting, a spitting image of Beau. Once I showed Beaudin a picture of him and Beaudin asked, “When did you take that of me?”
And as though the story begs to be completely interwoven- his name is Isaac, Beaudin’s middle name.
He is a year behind Beau in treatment. And that means that this week, today actually, he starts cycle 7. Or cycle 6, I don’t know. But he starts the cycle that is the cycle when Beau relapsed. Today he has the appointment that we had last year when I was concerned about more quarterly chemo into Beau’s spinal fluid, but I should have been concerned about cancerous cells.
I always forgot that the quarterly spinal taps were chemo and surveillance. It is like the trauma of chemo being dosed on a quick path to your child’s brain overtakes the worry that perhaps the fluid sample will show the cancer is back.
I never worried the cancer would come back.
So Isaac starts cycle 7 or cycle 6, or whichever cycle it is that is the cycle when for Beau the cancer came returned. And this past week, Isaac has been having headaches.
And for leukemia parents I could just stop there but for the layman I’ll remind you that relapse, specifically CSF relapse, can often present with persistent headaches.
And because our stories are interwoven, because we both hold January 17th as the day everything crumbled, because we both have our blonde haired blue eyed Isaac’s, we worry about such things together.
“He’s been complaining of headaches. I’m sure it’s nothing, or like a virus. The virus we’ve all been passing around. But we start cycle 7 tomorrow, or 6, and well, yeah, it’s just these headaches…” She texted me.
“I’m sure it’s the virus. It’s totally the virus. And I’m on edge for you though. I hate this.”
“When do we get to just have kids that get headaches?!”
“Right, the innocence. It’s lost forever…”
A year ago this morning Joshua took Beaudin to a standard clinic appointment and I sat home and worried about the toxic chemo pulsing through his sweet like brain. A year ago this afternoon our doctor called us and told us they had found concerning cells in the spinal fluid sample. Relapse.
Yesterday I stood in the kitchen and was thinking about Isaac and his headaches and the texts I had been sending with Lindsy. I was overcome with a feeling of desperation. I felt hot tears behind my eyes as I stared at the countertop.
Please God, Please don’t let Isaac relapse.
In the moment I felt like I’d never wanted anything so desperately in my life. Which isn’t true because 365 days ago I stood in the same kitchen and stared at the same countertop and plead for the same thing…for Beau.
But in the moment it felt as though the was nothing more important. My heart ached as I imagined Lindsy gripping her own kitchen counter.
Please God, not Isaac.
Before Beaudin was born I had a miscarriage. It was hard in all the ways you’d imagine, another story for another time. When we became pregnant with Beaudin the anxiety was crippling for me. Joshua and I decided the only way to survive the pregnancy would be to really believe that God was in control of whatever would come.
As a physical reminder of this surrender we chose the middle name Issac for our sweet baby in reference to the biblical story of Abraham & Isaac. We believed that with enough faith, faith like a man so willing to trust God he would walk his own son to slaughter, that we could handle anything. And really, that hopefully, God would spare us more suffering.
To say my faith has shifted since Beau was diagnosed may be the understatement of the century. And even now I haven’t a clue how this all ties together. But sometimes, if I can be real honest with y’all for second, sometimes I wonder if us giving Beaudin the middle name Isaac opened the door for all of this. I’d like to say, as most of you will quickly jump to, ‘Oh that’s not how God works,’ but if the last three years have taught me anything it can be summarized with that line from the Weird Al Jankovic song, “Everything you know is wrong, black is white, up is down, and short is long.”
People say, “Don’t pray for courage because God will walk you through something that builds courage.” and so I wonder if reason would also follow, “Don’t name your son Isaac.”
Sometimes it feels good, in a embarrassingly cathartic way, to have people in the same desperate boat as you. Like when a new mom is diagnosed. Do I wish this on her, no, but am I glad for the community, honestly, a bit. But I woke up this morning with a deep pit in my stomach, a desperate plea with God to not have Lindsy and I bond over relapse. I was surprised with myself, I felt only anguish that she may join me here without any silver-lining of possible camaraderie.
So I wept while I cooked lunch and wondered what it meant to pray for good results for Isaac. My own prayers for Beau hadn’t “worked”, so would these? What was the point.
“His CSF is clear. And they are talking port removal for the next cycle.” She updated me.
I exhaled. The exhale was relief, deep, deep relief, but the tears, I noticed quickly, were not. The tears were my old friend, tried and true to any cancer mom, envy. Her Isaac was going to be getting his port out, and I felt split between gratitude and self-pity.
For this moment, her Isaac had been given a ram. My Isaac is still bound and waiting.
You can read more about the Abraham and Issac story by, well reading the Bible- Genesis 22. Or here is a quick synopsis.