Choosing Faith Over Darkness

This post originally appeared on the Jesuit Association of Student Personnel Administrators- JASPA- blog.

Growing up Catholic, my relationship with God was traditional and fear-based. God was a white-haired old man, like the movie versions of Noah and Moses, who would get angry if I did something wrong. I went to church and received the sacraments, but I cannot say that I knew God, or wanted to know God. God was just there, an ethereal being floating in the clouds. I attended Catholic grade school and high-school. So, when it came time to choose a college, most of the institutions I applied to were also Catholic.

It wasn’t until my college experience at Boston College that I really came to know and love Christ and let Christ know and love me. My years in Chestnut Hill, Massachusetts were the beginning of my faith journey. While in college, I became a student of my faith. I learned about the church as a human, flawed institution made up of sinners trying to do the right thing. Through service learning experiences, I came face-to-face with my own privilege and my own assumptions about social justice and fairness. I discovered that I wanted to be in a relationship with Christ and that I could. All I had to do was try.

I didn’t know it at the time, but I was investing in a relationship that would turn out to be the most important one of my life. I leaned into my faith and I chose to embrace the mystery of being broken by my own sins and missteps, and yet so completely loved by Christ regardless.  It was like saving for retirement. I deposited my faith in the bank.

On December 12, 2008 my three year old son, Luke Ignatius Fochtman, was diagnosed with stage four cancer. Everything that I knew about life and my role in it changed instantly and permanently. I needed the faith that I had deposited all those years before. I needed it like air.

When your child is suffering, there is nothing that you will not do to take it from them. The weight of that and the possibility that he might die were unbearable at times. It created fear beyond anything that I had ever experienced up to that point or since. The 15 months of active treatment were pure terror. There were times when I was weak and doubted my ability to be the parent that Luke needed. There were times when I wondered if he would live.

I am not hard-wired for optimism. I am more of a cautious realist. So, my relationship with hope was a tricky one. But, through prayer I was given the wisdom to let go. For the first time in my life, I put all of my fears and hopes before Christ. Choosing faith over the darkness was the ultimate act of trust. My Jesuit education gave me the courage to do it.

My experiences with my son’s illness made me a more faithful person and a better college advisor. I was not job-searching when I found my current position in the College of Nursing at Michigan State University. It happened to come open and I applied. God works like that sometimes- opening doors and letting us choose to walk through them.

Nurses were an integral part of our son’s treatment; they cared for Luke on multiple levels. Nurses taught us how to administer medicine, clean central lines, and keep Luke safe. Certified Register Nurse Anesthetists (CRNAs) put Luke to sleep over 50 times. Although the cancer was in Luke’s body, his diagnosis and treatment impacted everyone. Nurse Practitioners cared for us as Luke’s family. They asked questions about Connor, our younger son, and taught us about the cognitive, social, and emotional impact that cancer can have on a family. One of Luke’s favorite nurses, “Nurse Marshmallow,” was there at the beginning of Luke’s treatment. She runs the long-term survivor clinic that Luke will join in April. She will be with us until Luke is an adult.

When Luke was in treatment, I withdrew from my faith account daily. I prayed all the time– in the car, the shower, before falling asleep. The prayers of others helped fill my account also; I was held and comforted by others’ prayers for us. Through my current work as an advisor, I feel like I am getting the chance to make deposits again.

I am honored to be working with young women and men who will be the next generation of nurses. My students are smart, focused, and driven. They also have servants’ hearts. September is childhood cancer awareness month. For the last two years, the nursing student association has invited me to speak at their meeting. In sharing our family’s journey through the darkness, I hope my students learn that they already have within them everything they need to be a compassionate nurse. I encourage and challenge them to see themselves as the nurses who will teach a father how to give his son injections, or the nurse who holds a mother’s hand as she cries tears of joy and relief. I also hope that my students will know that they can face darkness, too. Whatever it may be.

Zach Sobiech

I have been kind of whine-y and wallow-y lately for many reasons, some of them legitimate. I struggle sometimes with what to write because I don’t want to complain or appear ungrateful. I have a great life. But, I have also experienced extreme trauma and the recovery from that continues. The PTSD of our son’s cancer diagnosis strikes at the oddest times and without warning. Recently, we had to rent a car to get to NJ for my niece’s first birthday. Our car, it turned out, needed a new wheel bearing. Thanks Michigan winters and subsequent potholes. Then, we had an inch of water in our basement from a busted part in our sump pump. These things are minor, of course. But annoying nonetheless. And, they make me tired. Not sleepy. Like newborn baby, bone-crushing tired.

PTSD.

We have already endured the hardest thing. Haven’t we earned a pass for the rest to be smooth sailing?

Yesterday, I had to take L to a dermatologist for a suspicious mole. It is near the site of his primary tumor and was radiated, so his oncology team and pediatrician wanted it looked at by an expert. I left work early, pulled L out of school early, and then arrived to the appointment early. And then proceeded to wait 90 minutes in the waiting room. Blerg. Blerg. Blerg. Now, this is nowhere near what we endured while L was in treatment, but it is still scary. What if the mole was something? What if they wanted to biopsy it? Lucky for us, our five minute conversation with the doctor revealed that the mole is just a mole. He was nice actually. He didn’t apologize for being an hour late to our appointment, but he was knowledgeable and thorough.

As we drove home from the appointment, I got more and more angry. We waited so long in that stupid waiting room. L and I missed C’s T-ball game because we got home so late. Instead of being relieved that we got good news, I was annoyed and amped up. Turns out, Sean was hit hard, too. He told me later that he kept checking his phone looking for updates from me. Waiting really is the hardest part.

PTSD.

L and I decided to take a walk. As we headed down our block, L slipped his bony little hand into mine and started swinging. No prompting or begging from me. Just a moment of pure childhood innocence. As we walked around our block, he kept commenting on all the trees in bloom and how good they smelled. Lilacs, flowering crabapples, dogwoods, honeysuckle. The sweet, sweet smells of spring (Finally, spring!) in Michigan. “Spring and summer are my favorite seasons, Mom.”

Earlier that day, I had seen a tweet from the Children’s Cancer Research Fund (@childrenscancer) in MN about Zach Sobiech, asking people to share their stories and memories of Zach and how he has touched our lives. Today, May 20, marks the one year anniversary of Zach’s death from osteosarcoma. Although I never met Zach in person, I feel as if I know him. My sister-in-law Annie was his youth minister in Stillwater, MN. She provided updates to us about Zach and his treatment and we prayed for him and his family from the moment he was diagnosed in 2009 until his death. I read his mom, Laura’s Caringbridge posts and like all of us, hoped for clear scans and no recurrence.

I am not sure if I consciously thought about Zach and Laura while I was taking a walk with my own son. But, I think that subconsciously I was thinking about them. The Holy Spirit tapped me on my shoulder, or more accurately hit me over the head with a hammer, and told me to pay attention to that moment with L. There will come a day when he won’t hold my hand, or willingly take a walk with me. I know this. And through grace, I was reminded of that and paid attention to the moment that was right in front of my eyes. In his Soul Pancake video, My Last Days, Zach talks about life being a bunch of beautiful moments strung together. He is very wise.

The truth is, our family did a very, very hard thing. But, we didn’t do the hardest thing. We didn’t bury our son. He is here with us. He survived. And because of that, I must choose. I must choose to enjoy these fleeting precious moments that I have with both of my children. I must choose to make something good come from something so awful. I owe it to L. I owe it to Sean. I owe it to C. I owe it to Zach. I owe it to Laura. I owe it to my 46 Momma sisters who have also lost their children. I owe it to myself.

“I want to be known as the kid who went down fighting and didn’t really lose.”- Zach

Zach, you made one hell of a fight and you didn’t lose. Your life is a shining example to all of us here who continue to live in faith, and work hard to raise desperately needed money and awareness for all kids with cancer. Thank you, Zach.

Lucky and grateful, not blessed

A few weeks ago this post “The One Thing Christians Should Stop Saying” circulated through my facebook feed. I posted it to my own wall and, of course, referenced it in terms of our family’s journey through childhood cancer.

Sometimes, the hard part about blogging (for me) is that there are so many other writers out there who have said exactly what I think and feel and I am like “well, I have nothing to add because they said it already.” This is one of those posts. I love how Scott lovingly and gently calls us Christians out, himself included, for assigning intentionality and thought to God. God provided cars and cash to his faithful followers. What a blessing. No. “First, when I say that my material fortune is the result of God’s blessing, it reduces The Almighty to some sort of sky-bound, wish-granting fairy who spends his days randomly bestowing cars and cash upon his followers… God is not a behavioral psychologist.”

Boom.

There it is. God does not cause anything. We are humans. We choose. Although Scott’s post refers to material wealth and “blessings” all I have to do is insert cure or cancer-free and this is exactly how I feel about our son’s cancer diagnosis and subsequent good news. Since diagnosis in 2008 and subsequent “normalcy” of off-treatment (2010 to now) I have struggled with this idea of blessings. As a Christian, I believe that I am called to use what I have to help others. Is that a blessing? That I have something (or someone) that others don’t? Am I more or less blessed than another childhood cancer parent? I don’t think so and I would never, ever say that to another childhood cancer family. The faith journey that I am walking has taught me that there are no blessings. There are luck and gratitude. The blessing is in choosing to recognize them as such and then pay it forward. The God that I am in relationship with holds me when I weep and laughs when I laugh. The God I know and love lifts me up when I am weak or fearful. The God I know rejoices with me. God holds me.

A few weeks ago I got inspired to clean closets and bag up old clothes for donation. I posted this photo to Facebook with the caption “Spring cleaning. Found these jammies that L wore during treatment. He was THAT little. So stinking grateful to be where we are and committed to keep fighting.”

The jammies L wore during treatment in 2009

The jammies L wore during treatment in 2009

I almost wrote “blessed.” In fact, I think I did write blessed and then I deleted it. Because the truth, for me, is that I am not blessed. I am lucky. I am so unbelievably lucky that my son was diagnosed when he was, that we have health insurance that covered his treatments, that we live in a state where there is world-renowned children’s hospital, that my husband and I had cars that could get us to that hospital, that we had family & friends who rallied around us, that we had employers who supported us and let us create flexible schedules….the list goes on and on and on.

I am grateful that my son made it. I am grateful beyond measure that my son beat the odds stacked against him. I am grateful that our younger son is normal, healthy, and not bitter. I am grateful that my husband and I prayed together before our son was diagnosed so that when he was sick, it wasn’t weird to us to pray together, or to ask others to pray with and for us. I am grateful that my husband and I are still married and still madly in love. I am grateful that my husband is still my best friend.

Being lucky and grateful helps me carry on and keep pushing for awareness and funding for childhood cancer. Being lucky and choosing to be grateful gives me courage and strength to advocate for others. To frame my son’s journey and subsequent life as a survivor as a blessing is an insult. If we are blessed, then my son was chosen by God to suffer, and then chosen by God to be “cured.” If this is true, then the opposite is also true. God chose other children to suffer and to die. That their illnesses and deaths must be for a higher purpose because God willed it to be so. I do not believe this. I cannot have faith in a God that would cause such physical and emotional agony to children. I cannot have faith in a God that would let parents bury their children.

To say my son’s survivorship is a blessing is an insult because it completely devalues his fight. He fought to survive. The things his little body went through are unspeakable. The long-term consequences of his treatment are also unspeakable. That is no blessing. That was a challenge, a crappy hand, bad luck.

Bad things happen to good people. Bad things happen to children. There is no why. There is no reason. There is no blessing.

The blessings come after, in the choosing. Choosing to make something come from it. Choosing, daily, to carry on the fight. To keep pushing, to keep speaking up and out for the kids. I am not hard-wired to be optimistic. So for me, this daily choosing is hard. Some days it is bone-crushingly exhausting and exasperating. But, it is a choice I continue to make because I am lucky. And grateful.

There is a group of rabbis who shaved their heads yesterday. They have already raised $574K for the St. Baldrick’s Foundation.  One of the shavees, Jason Rosenberg, wrote a blog post about why he is shaving. He knows Superman Sam and his parents. They are also rabbis. They lost Sam to cancer last year. He speaks so eloquently about Sam’s parents making something. About having something good come from something so awful as childhood cancer and the death of a child.

Jason writes,

“This is their ‘what now?’ Through their unfathomable courage, grace and love, they brought dozens of Rabbis, and hundreds and thousands of others, along on a journey to do something. To make something. To redeem something. They are making something holy out of the least holy thing my mind can fathom.

And, in the end, that may be the whole of religion. Making something holy out of something which isn’t. Making order out of the chaos. I think that’s what Kushner meant when he said that ‘why do bad things happen?’ is the only religious question. Ultimately, religion is about finding order in the chaos, about finding meaning in the void.”

This idea of making something completely resonates with me. Childhood cancer is messy and chaotic. Advocating and fighting for the children is trying to make order out of it. (Maybe I was Jewish in a former life?)

No blessings. Just choosing to make something meaningful.

(I am not shaving this year. But, you can support my 46 Mommas fundraising efforts by donating here: http://www.stbaldricks.org/participants/mypage/663601/2014)