childhood cancer awareness

Mantra #4: The Only Way Out is Through

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Every time I look at social media (why do I keep doing that?) or read the news, there’s a new crisis.

It’s exhausting. And yet, it feels familiar.

We’ve have been here before (job loss, Covid, illness, injuries, etc.).

There is some comfort in that.

You have faced hard things before and you can do it again.

I originally wrote this post on March 20, 2020, as the pandemic was just beginning.

It applies to our current time as well. Replace Covid with 2025 and it works.

So, to help us through, here is Mantra #4: 𝙏𝙝𝙚 𝙤𝙣𝙡𝙮 𝙬𝙖𝙮 𝙤𝙪𝙩 𝙞𝙨 𝙩𝙝𝙧𝙤𝙪𝙜𝙝.

The coronavirus changed our world in an instant. People are hurting. They’re scared for their safety and their livelihoods. They’re afraid for elderly parents and small children. These are not small things and they should not be diminished. Do not diminish others’ fears. Or your own.

Fear is pain. Unfortunately, we live in a pain-avoidant culture. Many people are afraid of pain- their own, their children’s, the world’s. They ignore it, numb it, try to out-drink or our out-run it.

Fear is good, actually.

Fear reminds us that we’re alive. That there’s something left to lose and something still to live for.

Fear is normal. Avoiding it is not.

It really stinks that this virus isn’t the hardest the thing that I’ve ever done. I’m not happy about that. I’m pissed, actually. Yet, I’m oddly calm, too. There is, for us, a sense of: “yes, we’ve been here before. We got through that, we will get through this.”

We were completely quarantined for months and practiced social distancing for over a year. And yet, even then, there were others forced to do even more work than us. Bone marrow transplant patients are often hospitalized for years. Some of my friends fought for years and still lost their children.

Shepherding my son through cancer treatment was hard. Getting “over it” was harder. This is not my default setting. I’m an east-coaster raised on grades, achievements, and busy. If you weren’t productive, you weren’t worth much.

I don’t “get over” stuff. I am a hanger-on-er. I love to revisit old wounds and dissect how I’ve been wronged. I tried that for years. It only brought more pain and more fear.

After years of denial, I realized that: The only way out is through.

I had to work through my fear, anger, grief, disappointment, rage, frustration. It was brutal. I hated it. I resented most of it.

And I am grateful for it.

The choice is the point. Especially now when it feels as if we have no choice. It’s normal to feel helpless and hopeless. Just don’t stay there.

Name your fears. Write them in a journal. Shout them into the wind. The more we name things, the less power they have to control us.

Go cry in your closet or bathroom. Throw stuff or punch a pillow. Then, wash your face, brush your teeth, and go for a walk.

The more we name our hope, the more inspired we are to act, too

You got this and I’m rooting for you.

Survivor guilt’s a bitch

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While driving to GR to teach, I chatted with a fellow childhood cancer momma.

I went to class and had an absolute blast. Teaching feeds my soul. My job sucks it out and teaching on Monday nights restores it. Tuesday and Wednesday I was an absolute bitch. Moody, passive aggressive, mean. I know why; I’ve been here before.

Survivor guilt.

The momma I spoke with lost her son. She walked a completely different path than mine. Hers is worse. Way worse. Everything that we did for L, she did that and more for her own son, only it didn’t work. Her path is gut-wrenching, catastrophic. Cruel. Unnatural. Wrong. Parents should not bury their children. Ever.

Yet, while we talk she is kind, funny, gracious. We laugh. A LOT. She asks about L. Always. “How old is he now, what is he into, how is he feeling?” In the moment, these comments are lovely. I am awed by her ability to think outside herself and ask about my son, when her own is forever 11. Days later, I feel ashamed. Her kindness is too much. The light is too bright and I have to look away. I feel unworthy, naked, hypocritical.

Survivor guilt is a black hole, a vortex of rage, regret, and shit. It’s shit. My inner monologue is a barrage of anger and hope; grief and light:

I hate my job. But I shouldn’t hate it because my kid survived. My kid survived. I hate my job. I am not allowed to hate it. Yes, you are. You worked for five years to earn a degree that you thought would help you get…somewhere. You’re allowed to be frustrated. You’re allowed to strive for more. Or different. Nuh uh uh. No you’re not. Your kid survived. That was a gift. Suck it up. This is as good as it gets.  

My Facebook feed is people whining about Kim Kardashian and asking for video of her kidnapping. WTH? What in the world is wrong with people? The very next post I see is someone begging for prayers because another child is dying of cancer. I see things happening and sometimes feel as if I am the only one. I look over my shoulder like, “Do you see this? Can you believe this?” Fear, anger, people hurting. Six year olds get shot at school. We’re on the verge of World War 3 in Syria and a deranged bigot is running for President. There are kids at my sons’ school in a wealthy mid-west suburb who come to school hungry. A hurricane destroyed Haiti. Again. I get angry, like shake-my-fists-at-the-sky angry. “Why aren’t people noticing? Why don’t people care?”

I want to call my friend back and shout: “Please stop. Stop being so kind. I don’t deserve it. It’s too much. Too much. Why aren’t you shaking with rage? Everything you went through and…..”

While I was home sick two weeks ago, I tore through Glennon Doyle Melton’s new book, Love Warrior. She refers to herself as a canary in a coal mine. Canaries are brought in because they can sense toxins better than humans. When the canary stops singing, it’s time to go. She stopped singing because she sensed toxins. That doesn’t make her crazy, it makes her smart.

Maybe I am a canary, too. I see and feel things that others don’t. Maybe that makes me…me. I should embrace that person, instead of feeling bad that I feel all the things. I need to pull myself out of the guilt spiral and find a place that wants to hear my song. Because really, it’s not guilt I feel. It’s shame. I am ashamed that eight years post-diagnosis and six years off-treatment, I am still…not where I thought I would be.

I am supposed to be different as a result of L’s cancer. Aren’t I? More aware. More…something. Wouldn’t that have made 2008-2010 “worth it” on some level? Aren’t I supposed to be gracious and kind and loving, like my friend who is a tireless advocate for our kids, while she also grieves? Always grieving. She has been through hell and is a better person than almost everyone I know, when she could be angry for the rest of her life and be completely right in doing so. I quickly give others the benefit of the doubt, but never afford myself that grace. I see my friend as amazing. I see myself as a failure of graciousness. I secretly fear that if the roles were reversed, I would not be nearly as kind as she. My kid survived and I wallow. What would I be like if he hadn’t?

I have no idea what my momma friend thinks. That’s not my place. I am starting to believe that my role is to share good things so she can rejoice in them. Maybe hearing about kids who do make it helps her heal. Maybe that is part of how I can give back and heal, too….Show all the good. It brings me joy when I see others happy and thriving. Why wouldn’t my son’s progress and our happiness do that for others as well? I wonder if I secretly fear my own happiness.

I should pay more attention to my friend’s generosity. And really, that of all grieving mothers. There is not a single one who has ever made me feel bad that Luke survived. Ever. They have rejoiced more than me because they know the other possibility and they don’t want anyone else to endure it. That is the mark of a warrior and a survivor.

Grief and guilt are sneaky. Around the corner is a landmine that blows you back or a memory that makes you smile. It just depends on the moment, the millisecond that it catches me. Some days I am fine. I see pictures of baldy Luke and think, “Wow that was a different life. Thank God that’s behind us.” Other times, an amazing phone call with a friend pushes me underwater.

Glennon (we’re on a first name basis because I’ve read both her books, she signed my second one, I’ve heard her speak in person, and she retweeted me a few times) also says that maybe life is just hard because it’s hard, not because we’re doing it wrong.

Maybe grief and survivor guilt survivorship are like that, too. Maybe it’s just really hard.

Fragile Flower

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Sean and I had a disagreement earlier this week. L forgot all of his swimwear for our Labor Day weekend trip to Pentwater. It was mostly my fault. I had a list and didn’t double-check it before we left. It was also a little L’s fault, too because he had reassured me that he could pack his own bag. By the time he realized he had forgotten his stuff, it was too late to turn around. We bought an extra swimshirt and L borrowed C’s extra bathing suit. It was a fantastic farewell to summer.

Sean and I disagreed on how each of us responded to L’s (and mine) packing oversight. I think Sean was too harsh. He thinks I was too lenient. While “discussing” this Sean, blurted out, “He is not a fragile flower!”

And inside I raged and shook and screamed, “Yes HE IS! YES he is. Yes. He. Is.”

Sean sees L as he is. TEN. Kind, funny, loyal, and a hard-worker. He cares about Legos, Star Wars, Pokemon, and starting a Minecraft club with newly found friends. L sees himself that way, too.

For me, L is frozen in time. Bald. Silent. Accepting. Three. He was only three.

People tell me that L is a warrior. He fought to survive. He wanted to get better. He did everything that he was taught to do; just like the Jedi he is named for, he trusted his teachers- us- and followed their instruction. All true. However, he was also too young to know better. He didn’t know to be afraid. He did what all three year olds do- anything possible to get back to playing. Sean and I knew better. We carried the weight of “what-if” and “now what?” We carried it. I carried it. We are the warriors. I am a warrior.

I am L’s memory. Do I remind him of everything he went through? Bring it up so he knows he can do hard things. That he has already done the hardest thing? Or let it go? Let him relish the present and make a cancer a thing that happened a long time ago that has no bearing on today. The constant negotiation is exhausting.

He doesn’t remember. He. Doesn’t. Remember. I am desperate to forget. I envy L’s freedom. I want to erase smells, phrases, hospital scenes from my mind. I claw and scratch at them. And yet, in the oddest moments, the most unassuming times- like standing at the kitchen sink fighting about how to discipline him- my grip on those same memories tightens. The remnants of L’s treatment are visceral. I need them like oxygen.

I am afraid that focusing solely on his survival will make me lazy, or comfortable. I missed his cancer once before. It grew and grew for months. Months before I noticed it. What if that happens again? If loosen my grip, everything could slip away. I could slip away.

L’s journey is always with me. It is the current that pushes the river. Sean is right. L is not three. I need to choose to see the pre-teen boy right in front of me. He is not a fragile flower.

I am the fragile flower. I can let the river nurture it so it blooms into something better. Or I can let the river swallow me.