childhood cancer awareness

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.

Dear Fellow Trauma Parents

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No child should experience what your child is right now. No parent should experience what you are right now. No parent should witness their child’s suffering. Yet here you are.  Here we are.

Everything has changed. Forever. That’s dramatic. But that doesn’t make it any less real.

I know what it is like to have the rug pulled out from under you. To have all of your plans and dreams permanently shattered right before your eyes. Let no one tell you different. That is what has happened to you and to your baby.

Having walked- no, dragged my ass through a similar road- I wish I could take your pain from you. Take your hurt away. Make your baby better. But, I cannot. And neither can you, and I know that that is the hardest part. The helplessness. The fear that smells like hospital soap and tastes like bile and rage.

This sucks. Sucks. It sucks so bad. Everything that you are feeling is normal. And what you and your baby are experiencing right now is not normal. It is OK to grieve that. You have to grieve it.

I know that there are people in your life who are trying to be helpful. They are filling your Facebook feed and texting you with messages of hope and “this too shall pass,” and “you’re almost there,” or “I can’t imagine,” or the worst one, “God doesn’t give us more than we can handle.” Bullshit. I call uncle. God has nothing to do with this and everything to do with carrying you through it.

They mean well. They’re still good people. But you are in a different category now. You are not like them. You never will be again. What is happening to you, to your child, to your family, it is changing you. It is making you into a different person from the inside out. You are in the beginning stages of your “new normal” and you will not go back to who you were before. That person is gone.

Your new normal involves an entire team of people who were strangers to you just days ago. They are your family, now, your tribe. You believe in them. You trust them in ways you didn’t know were possible. You know things you shouldn’t know. Medical terms. Diagnoses. Prognoses. Some days, you will barely make it out of bed because the weight of your new life is too much. Other times, a ray of hope will worm its way into your heart and you will smile again. A real smile. Not a fake smile like the one you wear for your mother-in-law or your co-workers. Joy is not gone forever. It just looks different than it did before. And in many ways, it’s better. More pure.

I will not tell you that when this is over, you will look back on this time and feel awash with gratitude for all you have been through. Because this will never be over. And I know that there is nothing you wouldn’t do to take this from your child, to swallow it whole and let it be you instead. It is jarring that your greatest lessons as a parent have come to you through your child’s trauma. Something inside you has been broken.

It is OK.

Broken things can still be useful and beautiful. The crack makes them beautiful.

Continue to let people help you. Post on social media, share or not, rage, sleep, drink, hold each other. Do what you have to do. Lean into your fear, your hurt, your anger. It is healing. Lean into the prayers of others and let them hold you. We are carrying you. I promise.

I am thinking of you. I am praying for you. Tomorrow, you will get up and do it all again.

You can do this. You have to do this. You will do this.