#NaBloPoMo

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.

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.

Anger makes people uncomfortable

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There are five stages or parts of the grief process: Denial and isolation; anger; bargaining; depression; and acceptance. You can be in multiple “stages” at the same time and you can cycle in and out of stages. Meaning, it is possible to go through a stage and then go back to it. Over and over again.

A dear, dear friend of mine posted a graphic about the lack of funding for childhood cancer research on her facebook wall in September, which is national childhood cancer awareness month. She did this on her own. I commented and said thanks. A friend of hers (I do not know him, never met him) commented on the post as well and then compared childhood cancer funding with breast cancer funding. I wrote back and said it IS low when you consider that ALL 13 types of childhood cancers get 4% of the NCI’s total budget….blah blah. Two days later a different graphic came out. I shared it on my friend’s wall and said she should share it with her friend. Apparently, that was attacking him. I still don’t see that. But, he felt attacked and it happened on her wall so I apologized. I even wrote my version of a mea culpa post about it. You can read that here.

Since then, she and I have gone back and forth about my anger. She is a very good friend of mine and I appreciate her bringing all of this to my attention. I really had no idea how I was being perceived by others. I am doing what I do, which is try to raise awareness and advocate for children, who cannot speak for themselves.

She finally asked me what I was so angry about. Here’s my list:

  1. My three year old son almost died. (anger)
  2. He was diagnosed with stage 4 cancer in 2008. His team of oncologists told us once, “we will take him to the absolute brink and then bring him back.” They were right. The things that were done to my son’s little body are unspeakable. (anger)
  3. I wish that I had seen his tumor sooner. The cancer might have been stage 1-3, thus decreasing his treatment time and increasing his long-term survival rates. (bargaining) I am his mother. I am supposed to keep him safe.
  4. I am angry that I didn’t care about childhood cancer before my son was diagnosed. It’s the #1 disease killer of children. #1.
  5. I am mad a big pharma for putting money and profit ahead of patients’ lives.
  6. I am angry that Americans care more about boobs and penises than they do about kids.
  7. I am angry that the general public thinks childhood cancer is rare.
  8. I am angry that the general public thinks there is an 80% cure rate.
  9. The treatments that were used to save my son, could end up causing significant long-term damage (heart problems, growth problems, cognitive issues, puberty issues) and/or cause secondary cancers (skin cancer and/or leukemia).
  10. My son lived and others do not. I am angry that I have survivor guilt. I am angry that I am angry because I should be grateful and compassionate. If I keep advocating and raising money and awareness then fewer kids will get cancer and die (bargaining again).

Anger makes people uncomfortable. They equate it with violence. Which is sometimes true, but not always. The hard part about being angry with cancer is that there is nothing and no one to take it out on. Cancer is nebulous. There is no perpetrator that can be brought to trial. It is just out there. And those of us who have been forced to deal with it are left…

floating.

When I think of anger, I think of that scene in A few good men when Jack Nicholson says, “In places you don’t talk about at parties, you want me on that wall, you need me on that wall.” Of course people get angry. We all do. We are all humans. But, there are very few spaces and places where it is ok and acceptable to express your anger. It makes people uncomfortable. I get it.

I wish I weren’t angry. I wish that my son didn’t suffer the way he did. I wish. I wish. I wish. I can’t go back. I know this. And I am trying to move forward. The stages of grief are real. So is PTSD. There are triggers everywhere. Even the amazing Leah Still and her dad Devon’s heroic efforts to raise awareness and money are triggers. My son was once completely bald, too. Four years ago was both a lifetime and just yesterday.

Sometimes, the release of lashing out or posting snark is easier than the truth. But, that release is only temporary.

The truth is, I am not angry. I am scared. I am absolutely terrified that my son will die.

I have the right to be angry. And I am right to be angry. What happened to my son and our family was horrible, wrong, unfair, scary. What I am learning though is that what happened to us doesn’t give me the right to be self-righteous. I am working on that last elusive stage: acceptance.