God calls us, just as we are

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.

The Rhythm of Living

I am very grateful to my college friend, Joe, who invited me to write a guest post on his site, Paugwonk. This was my first experience as a guest blogger and working with an editor. It was amazing. Joe made the editing process painless. His insightful questions and suggestions forced me to think about my piece and work to make it better. The end result is something I am very proud of. Head on over to his site and give it some love.

Adjusting to life after my son’s cancer treatment has been slower and harder than I anticipated. I should be grateful for every day, and I should quit worrying that tomorrow won’t come. And most days, I am grateful. But that gratitude carries weight. And guilt. As a direct result of all that we endured, my tolerance for bullshit is zero, while my empathy and compassion for others’ suffering—especially children—is on high alert.

My heart is like a scab that I can’t stop picking. Just as it is close to healing, I scratch it open and bleed again. I am raw and prickly. I feel as if there should be a neon sign above my head that flashes a warning to others: “Slippery road ahead! Proceed with caution!”

On paper, we are the lucky ones. Statistical outliers. Some of my friends buried their babies. The science worked for our son and he is, so far, almost unscathed from the experience. But, I know different. We are just starting to get into long-term consequences of chemotherapy, radiation, and sedation drugs.

Luke and his fellow third graders learned the recorder this year (too many Hot Cross Buns). When we went to the local music store to buy the instrument, the high-schooler behind the counter asked if I wanted to put my name in a drawing for free lessons. At Luke’s urging, I dropped my name in the clear fishbowl on the counter, paid for the recorder, and drove home.

A few weeks later, we got a phone call that our family had won two free music lessons. Luke decided he wanted to learn drums. What the heck? My husband played sax in sixth grade band and at twenty-six taught himself to play guitar. That is the extent of the musical talents in our gene pool. But drums? Aren’t those really hard? I silently cheer for Luke and his willingness to take risks while praying that his teacher is kind, patient, and doesn’t move too fast.

The music store is located on the grounds of an old farm. It is a shared space with a dance studio and a church. The barn is now a café where parents can sip on lukewarm coffee and check Facebook while their kids are in lessons. I love repurposed things. They give me hope that something useful can be born from a broken past.

The night of the first lesson, we go into a soundproof shed. It’s cold and musty and there are egg cartons stapled to the walls. Covering the egg cartons are sheets of that rubbery foam stuff I used in college to make my bed softer. In the center of the room, there are two huge drum sets facing each other. There is no way my little boy will sit behind those monstrosities and make music.

To the outside world, Luke is a bony, gangly nine year-old boy with holes in his jeans and tussled hair.

To me, he is fragile, like the eggs that were held in the cartons now lining the drum shed walls.

Luke is a cancer survivor.

At age three, he was diagnosed with stage four cancer. Our verbally advanced toddler who loved to draw and sing had a seven-centimeter tumor in his leg and metastases in both lungs. “Too many to count,” the oncologists told us.

So when the drum instructor, Ed, walks in, I hold my breath. Did he hear me suck the air from the room with staccato gulps? If Ed sees that I’m nervous then Luke will, too. I don’t want to be nervous. I want to be normal.

“Here we go. Tread carefully with us,” I think to myself.

Trauma changes how you remember things and skews time in its favor. It doesn’t matter that Luke has been a cancer survivor for six years, longer than he ever was a cancer patient. When he sits down behind those drums, I see a bald three year old boy with no eyebrows or eyelashes. I see the central line tube that hung from his chest. That tube made him vulnerable to infection, but was also a lifeline to blood transfusions, to chemotherapy, to healing.

I also see a fighter. Luke listens carefully and tries hard. He wants to please me and impress his new teacher.

Ed is smart and talented. He doesn’t coddle Luke. He moves quickly and uses terms that neither Luke nor I understand. Ed treats Luke just like his other students.

I cannot tell if Luke liked the lesson or not. His scared face is the same as his concentrating face. I do not exhale until we are in the car and Luke tells me he wants to go back. He wants to keep learning drums even after the free lessons are over.

In theory, I know more than my son. I am older and have more life experience. I am learning, however, that I am not nearly as wise as him.

At the beginning of the school year, the kids colored “all about me posters.” What is my favorite color, favorite food, what I want to be when I grow up. The question in the bottom left hand corner was “something unique about me.” Luke had written about his cancer, “When I was three I was diagnosed with cancer. It was called rhabdomyosarcoma.”  Then, he erased it and wrote over it. In his third grade penmanship, he had pressed too hard, so even though the writing was gone, you could still see the imprint of the words coming through the new identity he had chosen to share on his poster. “I am left-handed. I love to play with Legos.” Maybe on his fourth grade “all about me poster” he will add that he is a drummer.

I need to take my cues from Luke. He doesn’t want to talk about cancer. I see Luke as a CANCER survivor. Luke sees himself as a cancer SURVIVOR. Cancer is part of who he is and it shaped him, but he actively chooses not to let it define him.

Driving home from church today, I sat in the passenger seat. Luke was behind me. Luke stared out his window in just the right way, and I could see his profile in the side-view mirror. His hair is getting darker, I think. Someday a girl will fall in love with his curled eyelashes and sensitive heart.

Luke says, “Ed says that drummers have to ignore distractions. He plays one beat but I can’t pay attention to him. I have to focus on the beat I am playing.”

 Life might be unfair, but it is also achingly beautiful.

It’s the “what ifs” that get me

For the first time ever, L pitched for 1 1/3 innings tonight. It went…not well. He was very, very nervous. He wants to please and gets nervous when people are watching. He especially wants to please people in positions of authority- parents, teachers, coaches.

There were a few tears. He lacks finesse (of course he does, he’s 9). He walked all but one batter, whom he struck out. His teammates- to their absolute credit and my pleasant surprise- were great. They have not yet learned to be mean. Instead they all cheer for each other: “You got this, Luke! You’ll get the next one, Luke!” He doesn’t. He might not ever. He likely will not ever.

Other boys do, though. There are some amazing athletes on this team. There are boys who do have finesse and control. One of the kids on this team struck out three batters in only 10 pitches. Multiple kids have grabbed would-be doubles right out the air. Other kids make the catch to get the out.

When L is up to bat (or performing at school, or playing with friends, or or or or) I am on high alert. I still see him as fragile. Bases loaded and he has the chance to get an RBI and I am praying that he makes it happen. I want him to be the hero of his own story…for something OTHER than being a cancer survivor.

What if there is some jerky parent who makes some smart ass comment about my son and his lack of athletic prowess? I am always at the ready. “Well, he stinks at baseball but he beat cancer, so take that ya blow hard!” There is never a jerky parent and I do not have to say anything. (Not yet, anyway. I fear that that day will come though.)

To the outside world, L is just too skinny and not that good at baseball. For me the experience is all about the “what ifs.” What if…

  1. He hadn’t lost 25% of his body weight (5 lbs) at age 3. Would he still be this thin? (Note. I am on the only person who worries about this. There are teams of oncology experts who are not worried. I know I need to let this one go. But there is not an ounce of fat on him. He is all bones.)
  2. He hadn’t had 15 months of intensive chemo that affected his coordination?
  3. They hadn’t radiated his thighs? Would he be a faster runner?
  4. He hadn’t spent so much time with adults at such a young age? Would he more naturally join in the chants of his fellow boys, rather than sitting on the end of the bench playing with blades of grass?

On their own, none of these things are awful or abnormal. He is average. He is nine. He is growing and making his way. But there is no “on their own” for him or for us, because there will always be this huge traumatic event in his past that may or may not have permanently altered everything about him.

It is highly likely that L would have been this average at baseball regardless of his health history. But that is something that I will never know.

Re-reading all of this now, I sound like an overbearing sports mom who thinks her kid is going to the major leagues. It’s not about that, L is good at lots of other things. He is good at things that matter more than sports. He is kind. He is a leader. He is loving. He is a creative thinker. But, when you are a young boy a lot of socialization and friendships and positive memories are forged around the baseball diamond. I just want that for him. I want his life and sense of self and memories to not be so effin layered.

I also hear a lot about me in this post. I need to get better at taking my cues from my son. It is his story, to share or not. I am working on it. Always working on it.