childhood cancer awareness

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.

God calls us, just as we are

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Today’s Gospel reading is:

He said to another man, “Follow me.” But he replied, “Lord, first let me go and bury my father.” Jesus said to him, “Let the dead bury their own dead, but you go and proclaim the kingdom of God.” Still another said, “I will follow you, Lord; but first let me go back and say goodbye to my family.” Jesus replied, “No one who puts a hand to the plow and looks back is fit for service in the kingdom of God.” Luke 9:59-62

This Gospel passage was also the inspiration for a piece that I wrote for publication in the Madonna University on-line journal. It was April 2011: five months before I shaved my head for the first time and a year before Sean and I purchased Hilltop Cottage in Pentwater. When I read today’s Scriptures, I remembered this piece. Much of it still rings true today, four years later.

As a young person growing up in the Catholic faith, I remember being confused by this Bible passage. Wouldn’t Jesus who loved and respected his parents so deeply want us to take the time to say goodbye to our own parents? For a long time, I could not wrap my brain around what this passage meant and how it applied to my life. The example that Jesus gave in this story seemed counter to the kind and loving Savior that I thought I knew. Looking back on my faith journey, I am sure this is just one of many passages that I selectively chose to file away because it had no relevance to my life at the time.

Fast forward to fall of 2008. I was a third year doctoral student and part-time graduate assistant at Michigan State University. I had been married to my best friend for five years and together we had two beautiful, smart, funny and healthy boys. I was living the life I imagined. In fact, I was happier than I thought possible.

All of that changed in an instant.

When Luke was diagnosed the world that I knew and my role in it were irrevocably changed. The speed with which everything happened and the severity of my son’s diagnosis sent me reeling. I was angry, frustrated, and overwhelmed. I didn’t have time to “bury my dead.” And, in the deepest, darkest place of myself, I didn’t feel worthy to do what God was calling me to do. I did not feel equipped for my new calling as the mother to a child in crisis.

Not long ago, my husband and I were talking about Luke’s treatment; specifically the six weeks of radiation and how physically draining they were, for all of us. I asked him, “How did we get through that?” He looked at me and said, “Monica, don’t you remember how many people were praying for us then?” He was right; those prayers lifted us up and gave us strength. Because people prayed for us, we were given the courage, knowledge, and skills we needed to fight our son’s cancer. We learned everything we could about Luke’s diagnosis and treatment. We went to the best hospital possible. We started reading books about nutrition. We joined several list-servs which connected us to other families in similar situations. We also worked diligently to keep our younger son, Connor’s life as “normal” as possible.

We’re lucky. The science worked for Luke. On October 26, 2009, we got the news that Luke was cancer-free. He received his last chemotherapy treatment on February 22, 2010. Luke is now five years old and thriving in pre-school. Connor is now three and is smart, funny, and very snuggly.

I thought that I would look back on my son’s treatment and be relieved that it was over. I also thought that I would be able to just jump back into my old life and move on. Reality has been very different. The world that I knew no longer exists and the person I was before cancer no longer exists, either. Obviously, I wish that my son had not had cancer. The 70 week treatment was grueling and the long-term side effects of chemotherapy and radiation are devastating. But he is still here with us and that is a gift.

I know now that that time in our lives was our finest hour. We were tested. We survived. Together. I don’t want to go back to my old life. I have learned too much about my sons and how courageous they are. I have learned too much about my husband and the strength of our marriage. I have learned too much about myself. And, most important, I have learned too much about God and the absolute purity of His love for us to ever want to go back.

My family and are I re-learning what it means to live the “off-treatment life.” We are finding a way that rings true for us, and  honors how God is calling us to do “what’s next.” Before our son was diagnosed, I had no idea how many children and families were impacted by cancer. Every day, 46 children are diagnosed with cancer. Pediatric cancer is the number one disease killer of children; cancer claims more lives than AIDS, cystic fibrosis, muscular dystrophy, and genetic anomalies combined. The children who do survive will face a lifetime of side effects.

Knowing what I do about cancer and how it impacted our family directly, I can no longer be silent. I am being called to do something active and tangible to raise money and awareness for pediatric cancer. On September 21, 2011, 45 other cancer moms and I are shaving our heads as part of a national team called 46 Mommas Shave for the Brave (www.46mommas.com/monicamfochtman). All of the money we raise will go to the St. Baldrick’s foundation, a non-profit charitable organization that funds more pediatric cancer research than any other private organization or foundation. I hope to show the world that while I will be bald by choice, every day, there are 46 kids who don’t have that choice. My husband Sean is being called to start a non-profit organization that will provide a week’s vacation on Lake Michigan free of charge to families who are finishing treatment. As a result of God’s grace, we are moving on from cancer.

In saying, “let the dead bury their dead,” I do not think that Jesus means we can’t care for our loved ones. I think He means that we must put aside our own desires and childish ways and have our eyes and ears open to His ways. I never thought that this is where my life would go. But, as a person of faith, I need to trust that God continues to watch over us and guide us through the next chapter. God loves us beyond measure and wants us to be happy. God also wants us to follow Him and we need to be ready when He calls. No time to go back and bury our dead, God calls each of us just as we are.