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.

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.

Resilience isn’t shiny

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I have thought about this a LOT. But I bristle when people tell me that my children are resilient (our survivor and his younger brother). “He will be fine. He won’t remember anything. Kids are so resilient.”  Someone, usually someone who has not walked in these shoes (thank God), would say it to me while L was experiencing a painful procedure or especially rough round of chemo or C was acting out because he missed us and there was no routine. No one ever physically patted me on the arm while saying this, but they might as well have. “Kids are resilient” is like the trauma version of “Bless your heart!”

NO.

Children are NOT resilient. Resilience is looking fear in the face and carrying on anyway. Children are not yet afraid. They do not know how to be resilient. What children are is fearless, in the truest sense of the word. They have no fear. Look into the eyes of a 4 yr old boy about to jump off the top step or soar through the air from the swings. He is fearless. He wants to fly! If he is afraid, it is because we have taught him to be careful, to fear the potential consequences.

Children have an inborn sense of JUSTICE, of fairness, of what is right and true. They know what is right and what is wrong and what is normal. And they will fight to do what is normal. They want to be.kids.

One of L’s nurses is in this #NursesWeek video from Mott. Listen carefully to Nurse Pam at the 7:15 mark:

Kids are kids first. And sick kids second. Or third or fourth. They’re really not interested in being sick. They’re really just here being kids. They want to go to the playroom.

Amen.

Thank you Nurse Pam, and many others at Mott, who really saw our son and our family. You modeled resilience for us. You see people at their most vulnerable and you still care. You held our hands, you let us cry with you. And then you came back the next day and did it again. You are resilient.

This quote was posted in Quiet Revolution, LLC’s Facebook page:

Everyday courage

Everyday courage

To which I responded: “Too often we make resilience shiny. It isn’t. Resilience is dirty. It’s hard work. It’s a choice we make, usually without fanfare or notice from others.” Susan Cain herself liked it. And then she favorited my tweet about it. (Yeah, I was geeking out about it!)

Making resilience shiny puts it on a pedestal and thus harder to achieve. If resilience is perfect and out there, then it is for other people. Don’t do that. Don’t put distance between yourself and resilience. That is a huge disservice to you and your story.

Resilience is: modeled, learned, chosen, and practiced. You don’t do it once and it sticks. It is a constant re-learning and re-choosing. Getting up once doesn’t make you resilient; and failing once or twice doesn’t make you not resilient. Resilience is a lifelong journey, an opportunity to choose growth over defeat, light over darkness, joy over suffering.

So no, my children are not resilient. They are fearless. I will learn that from them. They will learn resilience from me.