Dear Fellow Trauma Parents

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.

“Reconciling” childhood cancer and my faith

The anxious perfectionist in me hesitates to write most days. I think. A lot. All the time. All day. But, I post very little. I think a lot about why that is. Fear, anxiety, wanting to be liked, time, energy, laziness. Insert excuse here. Trying to find my voice on this blog is interesting. I am not entirely sure of who my audience is, or why those who have read before come back, or don’t. I am sure there are analytics about that somewhere. Maybe some techy blogger will help me figure that out.

Then, there are days like today where the universe send me multiple messages and it feels like I am being hit over the head with a baseball bat and the message is “Write, Monica!” You have something to say, write about it. Tell a story. So today my story is about the messages that I receive/see/choose to see about our journey with childhood cancer and trying to reconcile that with my faith.

I am following Saya Hillman on Twitter. She is a fellow Boston College alumna (Go Eagles! Women and Men for Others!) who is living with purpose in Chicago. She runs Mac and Cheese Productions, which is a company that helps people “live a life of yes!” Anyway, today on Twitter, she sent a link to this piece by Nate Pyle about the lie of God not giving you more than you can handle. I can’t remember how many times people said this to us, or about us, or near us, while L was in treatment. I have always hated this phrase. Detested it with the fire of a thousand suns. It has always rung false for me. Trite and condescending. And, in my experience, it is usually uttered by people who had experienced very little suffering. I know. It’s all relative. But, when your kid has stage four cancer and is being pumped full of poison, and you fear for their very lives, well, your perspective is different. My perspective is different.

I clicked on Nate’s blog and read through some of his posts. So far, I like what I have read. He is a man of faith, partner, parent, trying to do the best he can. He is also a Reformed minister. S and I met 13 years ago at Hope College in Holland, MI. We were the two Catholic people on staff at a Reformed institution, who after six weeks of intense Residence Life training decided we had crushes on each other and we should start dating. So, although I am not Reformed, my experiences those three years in Holland are very near and dear to my heart. They brought me my best friend, which brought me to my journey as a mother, and as a momcologist. See, signs everywhere.

I really love Nate’s raw honesty in his post. He is grieving, hurt, angry, confused. All of these things are okay. They are good. They are real. You have to go deeper into these feelings if you are ever going to heal. He recognizes this. He shares it publicly and in so doing, gives others permission to do the same. That rocks. That is what sharing your faith is about. I think. At least, that is what I look for and appreciate in others and their writing. I also love that he calls out “bumper-sticker theology” and challenges people of faith to ask tough questions. Yes. This. Asking the tough questions eventually leads to emptiness. In the emptiness is where the “answers” come.

S. and I talk almost daily about what it means to be blessed. Is there a difference between a gift, good fortune, a blessing, and just plain old luck? As a person of faith I sometimes think that I am supposed to think I am blessed. That all the good things I have, create, am, or will be, are from God. Okay. If this is true, then as a person of faith, I am bound by this tenet’s logical opposite, which is that all bad things also come from above. Does God have a curative and causative will? Is God a puppetmaster up in the sky pulling strings? Yikes! I sure as heck hope not. I personally don’t believe this.

I continue to stay involved in the childhood cancer community on Facebook and Twitter and my volunteer work with St. Baldrick’s. Some days this is harder than others. I see posts about “God answering prayers” or “Yes! God healed my grandson” or “believe in miracles!” juxtaposed with posts by my Momma friends who are missing their babies, grieving for lives cut too short, for miracles that didn’t come. Did God take their children to save others? Did they get chosen to walk this road because God believed that they could “handle” it? Are my friends who lost their babies more or less blessed? Are the same people who praise God when they get good news also praising them when they are hurting? No. I don’t believe this.

I can only speak for myself, but when my son was diagnosed, I felt totally and completely unprepared. I was a full-time PhD student, mom to two very young boys- still breastfeeding one of them- a wife, and part-time employee. At that time, my life was about me. Was I being punished? Or, did God send L. to me and S. because God knew this would happen to him and God knew that as L’s parents we could “handle” it?

I don’t have answers to most of these questions. How I see myself as a Christian has evolved over time and been deeply changed by my experience as a wife, mother, and momcologist. I grapple with these tough questions almost daily. I think, I pray, I (sometimes) write. So far, this is what I have come to believe:

The universe is random and chaotic. Bad things happen to good people. Good things happen to bad people. God did not give my son cancer. God did not take my son’s cancer away. My son wasn’t saved because I prayed harder, better, or more faithfully. If anything, I doubted more then (2008-2010) than I ever have before or since. God didn’t give my son cancer because he knew I could handle it. We are blessed. We are lucky. We are fortunate. All of them, none of them? We have health insurance. We have an amazing team of nurses and doctors at a world-class hospital less than 100 miles away from home. We have supportive family and friends who rallied around and behind us.

The God I know, love, wrestle with, and shout at, and thank, that God laughs when I laugh and weeps when I weep. That God holds me up and gently helps me choose to search for meaning and to embrace mystery.