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)

 

Seeing with new eyes

Part I

Tuesday was the first day that I was required to work at the University’s summer orientation program for new students. In the afternoon, we help students put together their first-year schedules. As an academic advisor, this is my job and about 85% of the time I love it. Orientation is a different beast on multiple levels. First, the students are overwhelmed and in a post-lunch food coma. Second, the room is very warm, thus adding to the sleepiness. Third and most challenging, the range of student experiences, preparation, attitude, and willingness to listen is drastic. In 60 minutes, I advised 1. an Honors College student who had enough AP credits to make her a sophomore; 2. a young man who was pre-enrolled in all of his courses and all of them were right (!); and 3. a young woman who was required by the University to take developmental writing and math, yet who was in complete denial about her ability to handle college-level Chemistry and fought us on her schedule. I do not offer this as complaint. I can’t stand whiners. I offer it as context for the layered complexity of advising work and the challenge of dealing with unknowns. At summer orientation, you never know what is going to walk in the door and end up sitting across from you. For me, this is both stimulating and a little overwhelming.

I came home on the overwhelmed side. I just could not understand (or accept) how in 2013 a student graduated from high school not being able to do math or write at a pre-college level. What do students learn in high school? What don’t they learn? Whose responsibility is it to teach them? Why don’t students take more ownership of their experiences? How can young people the same age, from the same state, in the same year, come to college at completely different levels? What were the social, economic, political, racial, and geographic factors that impacted their experiences, their level of exposure to higher education?

I felt sad. Sad for my student, that she has such a hard climb ahead of her. And a little sad for and disappointed in myself because I am not sure that in our 20 minute interaction, all that much was accomplished. How can one or two interactions with me and my colleagues possibly undo all that she has learned (or not) in the last 18 years?

Part II

After dinner, I took L to his baseball game. In my recent efforts to spend less time on Facebook and on my phone, I brought along a magazine that I then proceeded to leave on the front seat of my car. Instead of feeling sorry for myself for forgetting my magazine and about my self-imposed Facebook hiatus, I sat and listened. Because I wasn’t distracting myself with technology, I was able to really see all the things that were happening around me. I didn’t just look at them with my eyes, I felt them with my mind, my heart, my soul. At an elementary school baseball field, in a medium sized MidWestern, University town, I observed…

A man in a wheelchair arrived to the game with his two sons. The boys were on scooters a few feet in front of him. Before they ran out to meet their teammates, the dad called them over, gave them their hats, wiped his shirt with his tongue and cleaned smudges off their faces. It was such a tender moment of kind parenting.

Four sets of grandparents there to cheer on their grandchildren. They were all married. They were holding hands. One of the sets of grandparents lives with the parents of one of my son’s teammates. The way they laughed together, the knowing way they touched each others’ arms, hands, faces, was so moving to me.

There was also a bi-racial couple there; their older son was on the other team. When the dad arrived to the game, the younger boy shouted, “Dad!” And then bolted off his mom’s lap and ran full speed to meet him. Then the Dad went over to the bench and said hi to every kid on his son’s team. Every one. Then he greeted all the parents with a huge smile, handshake, pat on the back. And he was so…happy. You could not see this man and not smile yourself.

And, on the other team, there was a young boy with Down Syndrome. I will confess that when I saw him and his mother approach the field, I was nervous. With so much talk about bullying and kids being cruel to other kids, I was nervous. Would anyone on my son’s team, or my own son, say something mean or inappropriate? What would the behavior and attitude of the coaches be? His coaches and teammates did not treat him different than any other player. He participated fully in every part of the game. What a gift it was to watch this young man play. And what a gift it was to the young players out there- and to me- that his teammates and coaches treated him with the dignity and respect that he deserves.

All of this sounds like a scene from a bad Hallmark movie. But, it’s true. Perhaps the diverse community that I witnessed has nothing to do with my experience earlier that day. Maybe though, it has everything to do with it. As a person of faith, I believe that the Spirit was tapping me on the shoulder and giving me the grace to see with new, grateful eyes. I was sitting there thinking, “Wow. This is so cool! THIS is where I choose to live and work. All of these wonderful students, people, families, communities, and possibilities are right here. Right in front of my eyes.”

If I had been on my phone or reading, I would have missed all the good things and people that were happening on the baseball field. Earlier that day, I was focused on the wrong things in my interactions with my student and I missed the point. The questions I need to ask are not about her and her past experience, which were beyond her control on some level. The better questions to ask are about me and how I could have seen the situation with different eyes. What could I have done differently? Could I have been a stronger touchstone for this young woman? Although her facade said one thing, underneath she was probably very overwhelmed and confused.

I am going to work to see my students with new eyes. I don’t have to go to orientation. I get to meet a new group of students and help them. I may not be able to change the system they came from, but I can help them navigate the one they are entering.

Each day is a chance to see with new eyes. What are the areas of your life and work that need a new perspective? What will you do today, tomorrow, next week to see with new and grateful eyes?

Presence

We are our own worst critics. As someone who was born and raised in the fast-paced, competitive environment of the east coast, I am no exception. I am always harder on myself than anyone else.

Recently, my husband and I had the great fortune of going on an early anniversary trip. It was just the two of us. No agenda, no plans, no timelines. It was bliss. We tooled all over “Up North,” went out to dinner, went to a winery. I took some photos of our trip and posted some of them on Instagram or Facebook or Twitter. Probably all three. But, I didn’t post every one and the ones I did post weren’t in chronological order. In one of them, my hair was a mess (so, I thought) and my eyes were all squinty. Darn that sun!

Both of our boys are participating in organized sports this spring. I have taken some photos and posted a few. I should’ve posted more of them. What if someone notices that there are three photos of L but only two of C? I should get more up there. I should take a picture of C with his coach and his team at their final game tonight. I should print them out and mail them to my grandmother.

We have three beautiful lilac bushes in our front yard. They sit right under the windows in our living room. They are so huge that you can see and smell them from across the street. This is my favorite season. Our lilacs are late bloomers and they are white, not purple.

Last week, L and I were playing outside. We were tracing each other with sidewalk chalk. He gave me huge high heels in pink, my favorite color. When I traced him, I was instructed to include his hat. “Make sure you get my hat Momma. Because I am a baseball player.” While we were outside, I kept getting luscious wafts of lilac. The breeze would kick up and I could taste them on my tongue. I should’ve gotten my phone, taken a photo, and then posted it on Instagram. It would have been very artsy.

Instead, I ignored the “shoulds” and kept coloring with my son. When were done, we walked over to the lilacs together and inhaled.

I am working on presence. Physical, mental, emotional presence not social media presence. Just because I didn’t post photos for everyone else to comment on and “like” doesn’t mean they didn’t happen. There are moments that should belong to just me and my family. That’s a should I am okay with. Those lilacs sure do smell wonderful.