childhood cancer awareness

Lucky and grateful, not blessed

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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)

 

Table Read

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This afternoon we had a table read for the Listen to Your Mother Metro Detroit Show. Doesn’t that sound so cool? Table read. Like a TV show. One of the other cast members said, “Oh I love Shonda Rhimes! And now, I feel like her!” Who doesn’t want to be Shonda Rhimes?

We met at Alternatives for Girls in Detroit. AFG is changing the lives of homeless girls in Detroit; and they are the beneficiary of our LTYM ticket sales. You can check out the amazing organization here.   There were 15 women in the room, all there to share their stories about motherhood. We sat in a circle, chit-chatted and ate some lovely donated pastries. Thank goodness I didn’t give up dessert for Lent! Our show’s producers- Angela, Angela, and Jessica– didn’t want us to introduce ourselves too fully. They wanted us to know each other through our stories and to read them the way we did in our auditions. This is also how the audience will experience them at the show on May 4. No frills. Women and their stories will take center stage.

I arrived at the table read today nervous and confident. I was nervous to read my full audition piece in front of my fellow castmates. But, I had been chosen from among 50 other women writers who auditioned so I was a little confident, too. I thought that my story and my writing would be among the best in the group. They were neither of those things. The talent of other writers absolutely blew my face off. The raw emotion that the other women captured using only their words was awe-some. And, I did the ugly cry throughout my entire five minutes of reading. Blerg.

On the drive home and the rest of the evening I have been thinking about the women in my circles. The childhood cancer community is like the PhD community. When everyone else in your circle has what you have or is in the process of getting one (a PhD) or experienced what you experienced (childhood cancer), it is easy to become insular and isolated. Only about 3% of American women has a doctorate. I detest the word “rare” when speaking about children with cancer because I believe it dilutes the power of our message and the need for more research funding. However, the number of children diagnosed each year is small. And with only 350 new cases of rhabdo each year, L’s diagnosis was even more rare. Basically for the last 5 years, I have been with people who are exactly like me. This is not a bad thing. I needed and still need those networks of women, especially my fellow momcologists and student affairs parents. I will always need them. But today I learned that as a result of my closed circles, I have lulled myself into thinking that my story, our story, our journey is unique, or would win some prize for most traumatic or most tragic. Not true.

There is no prize for tragic. There is no hierarchy of suffering or pain or misery or grief. There were women in that room today who shared about infertility, divorce, adoption, losing children, burying their parents. And all of this was going on at the same time I was living my own story. Parallel lives. From December 2008 until March 2010 I kept wondering how the world was still spinning. How was it still going while my baby was suffering so horribly and while S and I were so utterly terrified and exhausted? Turns out, most of the other women in that room today were wondering the same things. About their own lives, their own children, and marriages, and parents.

Jessica, one of our directors, said that this experience has made her more patient and more tolerant. That you really never know what someone else has experienced. That people have reasons for the way they act. Everyone has a story. Every.one.

What a gift, honor and privilege to be in that room today. To my fellow castmates, thank you. You are inspiring. And, I thank you for pushing me to want to be a better writer. I can’t wait for dress rehearsal in April and the real deal on May 4, 2014!

Thank you, Jimmy!

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Dear Jimmy Kimmel,

Thank you for taking the time to invite our friend #SuperMax to be on your show. I met Max and his Momma Audra in 2012. Audra and I are part of the 46 Mommas. We’re moms to kids with cancer, shaving our heads to raise money and awareness for the St. Baldrick’s Foundation. As I am sure you know from meeting them, Max and his family are forces of nature. They are not like other people. They DO things to make others better. They DO things to make the world better. They have ideas and then they make them happen.

Children with cancer go through so much. Too much. And Max has been through more than most. Our children endure so much that most of the popular media has turned a blind eye to them. I don’t understand why children getting cancer is not newsworthy. I don’t understand why our children dying from cancer is not newsworthy. It’s not though.

But you wearing a rainbow #SuitoftheLoom and then auctioning it off for charity has gone viral. Thank you for doing this. Maybe it was for ratings. Maybe you needed the publicity to make yourself feel better. I don’t know. I don’t care. I care that you did it and now the world is watching.

I bet that after meeting Max and his family, you are feeling some things: Awe. Amazement. Wonder. Gratitude. Disbelief. I keep watching this clip of you and Max. I see you getting choked up. I am moved by watching you be moved by this small, brave, strong, kind boy. Please don’t stop. Please continue to be moved by him. Please don’t turn away.

http://www.youtube.com/watch?v=AP9cixfVyro

Please lean in to those feelings and keep supporting him and the 1,000s of kids like him. 1,000s. Children with cancer need people to stand up for them and be their voice. To raise awareness and desperately needed money for research. You are doing a good thing. People are watching.  And many #childhoodcancer parents like me are grateful.

Love from your new fan,

Monica