childhood cancer awareness

Choosing Faith Over Darkness

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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.

Perspective is the only everything

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Your hardest thing is your hardest thing.

I recently re-found a journal that I used in Spring 2008 when I was enrolled in a Leadership course. It was an elective in my doctoral program and one of the best academic experiences of my life. As part of the class, we were to journal- thoughts, reflections, quotes that stuck with us, etc. I kicked it old school and hand wrote all my thoughts.

My life in spring 2008 was very different from today. At the time, I had two healthy children. L was 2.5 and C was a nursing infant. S would bring the boys to my classroom every Tuesday night. S and L would go get dinner at the food court and I would sit in the hallway and feed C while my classmates debated leadership theory. I tried to leave the classroom door open and sit as close as possible so I could still hear what they were saying.

The final entry in my journal is dated April 26, 2008. The prompt was from our instructor Marilyn, “What is your heroic journey?” My response, written in pink, roller-ball pen was:

I don’t want to toot my own horn…but I really think that ‘this’ is my heroic journey. ‘This’ is being a full-time mom,PhD student, wife…w/ being a part-time professional. This is the hardest I’ve ever worked; the most reading & writing I’ve ever done; the most tired I’ve ever been; the most content and energized I’ve ever been.

I am my choices. I choose to be here. I choose to be a mom, wife, student…student, wife, mom…wife, mom, student. This is MY LIFE- OUR LIFE and I wouldn’t have it any other way. I’ve survived the crucible, learned from it, and moved on. Isn’t that a heroic journey??

Less than 8 months after that post, L was diagnosed with cancer. I was so naive, so blissfully unaware. At the time, though, that was the only perspective I had. At the time, what I wrote was my hardest thing. Re-reading that passage made me angry and sad. I wish that my hardest thing was being a poor, tired, nursing mother and student. I wish that my only concerns were sleeping through the night and how I would pay for next semester’s tuition.

Cancer stole L’s innocence. And mine, too.

I see friends, mothers, bloggers post (complain) on Twitter and Facebook about their kids. Broken arms, the flu, stomach viruses, ear infections. My tolerance for these minor (to me) complaints is very, very low. I read these posts and I want to scream, to shake people into awareness, to make people care. In my head, I am not gracious. I am mean, impatient, annoyed.

I try to not act on those feelings and I am not proud of them. But, I do feel them. All of what happened to L and to us is so wrong, so unnatural, and so unfair. But, the world kept spinning. Friends kept living their lives. I do not want them to experience what I did and I would do everything we were forced to do again if I knew that it would save L. I just wish that I didn’t know what I know.

Sometimes, in the deep, dark places…I think that the perspective I gained from L’s diagnosis, treatment, and subsequent long-term care makes me better than others. God, that sounds arrogant. I know this is not true. Before L was diagnosed, my hardest thing was negotiating school and motherhood. For some people, their hardest thing might be a child’s surgery to get ear tubes or an appendectomy. Cognitively, I get it. I am not any better than anyone else. Just different.

My hardest thing was my hardest thing. (And, what if L’s cancer diagnosis turns out not to be the hardest thing?)

While L was in treatment, friends of our went through divorce proceedings. When they told us about it they said something to the effect of, “I feel bad even saying this to you. I can’t imagine going through cancer with your kid.” To which we said, “I can’t imagine getting divorced!”

Your hardest thing is your hardest thing. It’s not a contest. It’s not a race. Part of leaning in to this “new normal” is how to deal with all this stuff. All this messy, icky stuff.

Perspective is everything. It’s really the only thing. I pray that God continues to give me grace to see.

First Day of School, in Three Parts

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2009

When L was in treatment, I remember being viscerally angry at all of my facebook friends who were posting pictures of their smiling 4 year olds off to their first day of pre-school. L was being denied that opportunity because he was fighting for his life. It seems silly and petty now. Pre-school isn’t really school. Not really. And, my time would have been better spent sleeping, or studying, or paying attention to my marriage, or to C, who was still just a baby then. I wasn’t really mad at my friends or their kids. I was just jealous and angry at cancer and scared. So, so scared. That’s the thing with fear and grief. They take you outside yourself and make you feel unnatural things.

2011

I wrote this post about the First Day of School. L was finally cancer-free, off-treatment, and we were dipping our toes into the “off-treatment” life. Well, now I can say dipping our toes. I think at the time it was more like a no-holds-barred-white-knuckle-squeeze-every-stinking-thing-I-can-out-of-life-roller-coaster-ride. I was so afraid that the first days of school would be stolen from us, that I probably over exaggerated their meaning, to me and to L. And certainly to C. I over exaggerated everything. At the time, it was the only way I knew how to get back to living. “This could be the only chance we get to do this. Ever. Quick! Where’s my camera?”

Looking back at that piece I wrote, I can see and smell the survivor guilt dripping from every paragraph like spilled honey. Again, fear and grief make you do funny things. I wrote that post in the living room of our house and I remember very clearly thinking about the Mommas who I would soon meet at the 2011 shave. I felt guilty. My son survived. My kid lived. My kid got to go to the first day of school. My kids would come with us to Washington, DC and my survivor would be on stage with me taking the first swipe at my curly hair.

Meeting those Mommas in person, made it worse for me personally. I feel bad saying that, but it’s true. First, I was face-to-face with women (and their kiddos) who could’ve been me. We are (still are, really) just one spot on his lungs away from relapse or one bad blood draw away from a secondary cancer. I knew that then. I know it now. I will never not know it. Second, meeting the Mommas and shaving in 2011 made me feel incredibly guilty. Like I wasn’t good enough, like I wasn’t gracious enough. That I needed to have worked harder for L’s survivorship, or that I owed all these women and their dead children something because my kid made it and theirs didn’t.

NONE of the Mommas made me feel that way. I made myself feel that way. Survivor guilt and PTSD are real. And they manifest themselves in some really effed up ways. In fact, the bereaved Mommas whom I have come to know and love are kind, compassionate, fiesty, determined, and focused advocates for ALL kids. They are genuinely GLAD for L and our family that he survived. It is what they wanted for their own children and didn’t get. No one knows why. We will never know why. That is the rub. Some kids make it. Some don’t. These women know grief and they will do almost anything to make sure that other kids and their mothers don’t also walk that path. I pray that in the face of such loss I would be so gracious. I don’t think so though.

I didn’t write about the first day of school in 2012 or 2013. I am glad for that. I think I needed to NOT write about it. I needed to just let them happen and not be heavy with so many expectations.

2014

The boys’ first day of school was only last week. Seems like longer. Time is like that. The days are long, but weeks fly by. Last Tuesday dawned sunny and full of energy. This year was great because we were not new. We knew the school, lots of the families, and teachers. The principal knows all of us by name and stands in front of the building and greets everyone as they walk or drive up. I love our neighborhood school and feel very fortunate to live where we do. When we walked inside, I felt excitement and relief. Not relief that L got to experience another “first day of school” but relief that I didn’t feel relief. I was thrilled for my boys. I was grateful and proud. I think the number of pictures I take of an experience is inversely related to how much I enjoyed it. On vacation, I took 20 pictures max. It was one of the best weeks I had all summer. On the first day of school, I took 14 photos. That’s it. And my favorite photos aren’t the staged ones I made the boys take on the front step. My favorites are the goofy ones I took when they thought I wasn’t looking.

September is national childhood cancer awareness month. Around the world, kids and their parents are fighting like hell to get their “first day of school.” Every single one of them deserves it.