Childhood Cancer Awareness

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.

The New Normal: Nothing’s Normal | Children’s Cancer Research Fund

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Grateful to Laura Sobiech and Allie Shoemaker for their invitation to share our childhood cancer journey with the Children’s Cancer Research Fund audience. My guest blog post can be found by clicking on the link below.

On December 12, 2008, our then 3-year-old son, Luke, was…

Source: The New Normal: Nothing’s Normal | Children’s Cancer Research Fund

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.