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)

 

“Reconciling” childhood cancer and my faith

The anxious perfectionist in me hesitates to write most days. I think. A lot. All the time. All day. But, I post very little. I think a lot about why that is. Fear, anxiety, wanting to be liked, time, energy, laziness. Insert excuse here. Trying to find my voice on this blog is interesting. I am not entirely sure of who my audience is, or why those who have read before come back, or don’t. I am sure there are analytics about that somewhere. Maybe some techy blogger will help me figure that out.

Then, there are days like today where the universe send me multiple messages and it feels like I am being hit over the head with a baseball bat and the message is “Write, Monica!” You have something to say, write about it. Tell a story. So today my story is about the messages that I receive/see/choose to see about our journey with childhood cancer and trying to reconcile that with my faith.

I am following Saya Hillman on Twitter. She is a fellow Boston College alumna (Go Eagles! Women and Men for Others!) who is living with purpose in Chicago. She runs Mac and Cheese Productions, which is a company that helps people “live a life of yes!” Anyway, today on Twitter, she sent a link to this piece by Nate Pyle about the lie of God not giving you more than you can handle. I can’t remember how many times people said this to us, or about us, or near us, while L was in treatment. I have always hated this phrase. Detested it with the fire of a thousand suns. It has always rung false for me. Trite and condescending. And, in my experience, it is usually uttered by people who had experienced very little suffering. I know. It’s all relative. But, when your kid has stage four cancer and is being pumped full of poison, and you fear for their very lives, well, your perspective is different. My perspective is different.

I clicked on Nate’s blog and read through some of his posts. So far, I like what I have read. He is a man of faith, partner, parent, trying to do the best he can. He is also a Reformed minister. S and I met 13 years ago at Hope College in Holland, MI. We were the two Catholic people on staff at a Reformed institution, who after six weeks of intense Residence Life training decided we had crushes on each other and we should start dating. So, although I am not Reformed, my experiences those three years in Holland are very near and dear to my heart. They brought me my best friend, which brought me to my journey as a mother, and as a momcologist. See, signs everywhere.

I really love Nate’s raw honesty in his post. He is grieving, hurt, angry, confused. All of these things are okay. They are good. They are real. You have to go deeper into these feelings if you are ever going to heal. He recognizes this. He shares it publicly and in so doing, gives others permission to do the same. That rocks. That is what sharing your faith is about. I think. At least, that is what I look for and appreciate in others and their writing. I also love that he calls out “bumper-sticker theology” and challenges people of faith to ask tough questions. Yes. This. Asking the tough questions eventually leads to emptiness. In the emptiness is where the “answers” come.

S. and I talk almost daily about what it means to be blessed. Is there a difference between a gift, good fortune, a blessing, and just plain old luck? As a person of faith I sometimes think that I am supposed to think I am blessed. That all the good things I have, create, am, or will be, are from God. Okay. If this is true, then as a person of faith, I am bound by this tenet’s logical opposite, which is that all bad things also come from above. Does God have a curative and causative will? Is God a puppetmaster up in the sky pulling strings? Yikes! I sure as heck hope not. I personally don’t believe this.

I continue to stay involved in the childhood cancer community on Facebook and Twitter and my volunteer work with St. Baldrick’s. Some days this is harder than others. I see posts about “God answering prayers” or “Yes! God healed my grandson” or “believe in miracles!” juxtaposed with posts by my Momma friends who are missing their babies, grieving for lives cut too short, for miracles that didn’t come. Did God take their children to save others? Did they get chosen to walk this road because God believed that they could “handle” it? Are my friends who lost their babies more or less blessed? Are the same people who praise God when they get good news also praising them when they are hurting? No. I don’t believe this.

I can only speak for myself, but when my son was diagnosed, I felt totally and completely unprepared. I was a full-time PhD student, mom to two very young boys- still breastfeeding one of them- a wife, and part-time employee. At that time, my life was about me. Was I being punished? Or, did God send L. to me and S. because God knew this would happen to him and God knew that as L’s parents we could “handle” it?

I don’t have answers to most of these questions. How I see myself as a Christian has evolved over time and been deeply changed by my experience as a wife, mother, and momcologist. I grapple with these tough questions almost daily. I think, I pray, I (sometimes) write. So far, this is what I have come to believe:

The universe is random and chaotic. Bad things happen to good people. Good things happen to bad people. God did not give my son cancer. God did not take my son’s cancer away. My son wasn’t saved because I prayed harder, better, or more faithfully. If anything, I doubted more then (2008-2010) than I ever have before or since. God didn’t give my son cancer because he knew I could handle it. We are blessed. We are lucky. We are fortunate. All of them, none of them? We have health insurance. We have an amazing team of nurses and doctors at a world-class hospital less than 100 miles away from home. We have supportive family and friends who rallied around and behind us.

The God I know, love, wrestle with, and shout at, and thank, that God laughs when I laugh and weeps when I weep. That God holds me up and gently helps me choose to search for meaning and to embrace mystery.