Category: Faith

Snark is my sugar

Today is Ash Wednesday and the beginning of Lent. As a Catholic Christian, Lent is an important time for me. It is a 40 day journey (47 if you count weekend days) toward Easter. It is a time to pray better, reflect more, and strive to end the journey different than when I started. I hope to have a stronger relationship with Christ as a result of this Lenten journey. I hope to have a stronger relationship with myself as a result of this Lenten journey.

Every year I start Lent with great enthusiasm. I actually love Ash Wednesday. I love getting ashes. I love that the ashes come from burning the palms used  on Palm Sunday the  previous year. The cyclical nature of the Church’s seasons is very comforting to me. Catholics also do symbols really well. I love the symbolism of the ashes- “remember that you are dust and to dust you shall return.”

In my circles (very small ones on Twitter and Facebook), there is talk about “what did you give up for Lent?” There are many great responses- eating out, cursing, sweets, caffeine, Facebook, sugar. I decided a few days ago that I was going to take a huge personal risk (Risk is my #oneword2014) and give up public postings of snark. For 47 days, I will try to make all of my public posts, wall comments, and tweets positive. I will not post sarcastic, snarky things in response to what I read.

This is a huge deal for me. Snark is my sugar. I love snark. I am addicted to snark. Snark is hard to resist. It feels so good going down.

I use snark to be funny and self-deprecating, to put others at ease, to feel smart. I used to think that my snark was justified because I am from the east coast, smart, and been through more than most of my peers. While these things may be true in my head, they do not matter to the outside world.

Several people whom I know and love have told me that I am direct. I thought this was a good thing. I say what I mean and I mean what I say. What you see is what you get. These are good things. In context. With people who know and love me and whom I know and love. Snark is not a good thing without the context of relationship.

I am slowly learning that snark is my shield, my armor, my way to strike first. It also creates distance. It puts the receiver on the defensive, or leaves them confused. That is the opposite of the impact that I want to have. This is the opposite of the impact that I do have with the students, colleagues, and friends who know me well.

Snark is my sugar. It is so, so good going down. But after a bit, the sugar high wears off and I get a headache.

So, this Lent, I am going to try really hard to give up snark. I am going to be honest and positive, not direct and snarky. I am going to challenge myself to start, endure, and finish Lent strong. I am taking a huge risk by doing this and by telling you all about it. I welcome and appreciate your love, prayers, and words of encouragement.

 

 

 

Reconciliation

This year our older son will make his First Reconciliation (Penance, Confession). This sacrament involves an examination of your conscience and then a confession of your sins to a priest. My husband and I went to the parent meeting this morning. The very scattered, but in the end very wise, Religious Education Director asked us to go around in a circle (shudder, shudder) and share our experiences with this sacrament. I am a “cradle Catholic,” meaning born and raised. I went to Catholic grade school, high school, and even college. I cannot remember the last time I went to Confession.

As we went around the circle sharing our experiences, a common and very sad theme emerged. Few of us in that room had a positive experience with Reconciliation and only one parent continued to go regularly. Many of the people in the room were in my age cohort and our early, formative experiences of church and sacrament were focused on shame, guilt, and fear. One woman shared that her first Confession was so awful that she is still getting over it. Oy.

Almost all of my early experiences in church were focused on things that I had done wrong (shame). I had chosen to sin (guilt). I had made God angry with my bad choices (talk about fear! Yikes!). At my grade school, we had to carry a discipline folder at all times. It had one piece of paper in it and one piece only. The color of that paper changed every quarter. If you committed some sort of infraction, you were given a check on your discipline sheet. Ten checks equaled a major, which equaled a detention. Not having your folder was check-worthy. What the what? The focus, as I remember it, was punitive. The focus was on doing wrong, not on striving to do better.

Somehow I managed to never get a detention. Although in sixth grade, I dropped the F bomb at recess, which should have been an automatic major, but the teacher took mercy on me and instead, reamed into me in the hallway so all my peers could hear. That was uplifting and life-giving.

My #oneword2014 is risk. I am taking a big personal risk here and for the first time publicly calling out the church. You failed us. You failed an entire generation of young people who are now trying to raise our children in the same faith that failed us. You taught us to live in fear. You taught us that we were beings who needed fixing, not gifts that could be polished or refined or shone for a greater, higher purpose.

I made my first confession in second grade. Everyone did. It was just the hoop that you went through. The only things I remember from that day are: one of my classmates bawling his eyes out because he was so nervous and me making up some story about not eating my vegetables and disobeying my parents. I have no idea what I wore, how long it lasted, or how many times I have gone to Confession since then. Clearly a formative experience that stuck.

In my time to share, I stated that I could not remember the last time I went to confession. Yet, I feel deeply connected to the Eucharist and we attend Mass regularly as a family. Both of these are true. I love going to church and I love going to our church in particular. It feeds me, literally and spiritually. I love the music, the sense of community, the diversity.

I started the meeting with a chip on my shoulder, thinking that L would jump through this Reconciliation hoop too and then that would probably be the end of it. I don’t go to Confession. I don’t need to because I confess my sins before I go to Communion. I pray for forgiveness and strength, daily. Isn’t that a confession of sorts? As the meeting progressed, the Religious Ed Director shared her own experiences with the sacrament. She joined the church as an adult and said, “I feel very fortunate that my own formation was so positive.” She then shared a new analogy for the sacrament. She encouraged us to think about it like you would a relationship with a personal trainer. You don’t go and get beat up because you ate a doughnut or didn’t work out. You go to make improvements, to get better, more fit. Confession is not a program about what you did wrong. It’s about a clean slate so you can be the best version of yourself.

Whoa! What a refreshing and life-giving idea! Talk about a complete paradigm shift from the lessons I learned as second grader in 198…. What a wonderful way to think about this sacrament. She then encouraged us to think about going to Confession regularly (whatever that looks like for you personally). If we go, then our children will go. If you only do something once, “it won’t stick” she said. And, they will value it even less because there was no purpose or meaning behind it.

Gut check.

I grew up in a household where one parent’s motto was “Do as I say, not as I do.” I often feel that this was the motto of the church in which I was raised as well. This is hypocritical at best and the first violation of good parenting. Children will see everything you do and remember very little of what you say. Yet, when I acted in a way that was consistent with what I observed, I was shamed and made to feel less than. I do not want that for my own children. If I am going to require that they invest time in the sacraments, then I must as well. Do as I do, not as I say.

So, in keeping with my #oneword2014, I will be going to Confession. Soon.

“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.

Weeding out the garden

We have a community garden plot again this summer. Because our neighborhood is so shaded, there is no room in our own yard for a garden. We rent a plot in an open field/park area about 1/2 mile from our house. This year we are growing tomatoes, radishes, beets, cucumbers, and beans. I will confess that overall, the gardening experience has been less than magical for me. I feel bad that our plot is not as well groomed as others. I hate mosquitoes. And most nights, the last thing I want to do after work is fill up every possible gallon container in our house (you have to bring your own water), load it into our car, convince the boys to come with me, and then drive over to the plot. We have been less than diligent this summer.

After being away for a week, my husband drove out to the garden yesterday to assess the damage. I was secretly hoping that it would be beyond repair and we could say “oh well! We tried!” and be done with it. No such luck. He called to say that the vegetables were still there and that they were growing. In his words, it was “worth salvaging.” There were even enough radishes there to harvest. I grumpily packed up the car and headed over to help. When I arrived, there were weeds and grass as tall as my knees. The vegetables looked like they were completely gone. Where was all this stuff that could be saved?

It was there, growing in spite of the weeds. Growing under the weeds. Growing within the weeds.

The ground was moist and soft after all the rain last week. So, pulling weeds was actually quite easy. My husband taught the boys how to look for the plant first. Squat down right next to it. Find the plant with your eyes and your hands. Then, gently pull the weeds away from the plant. Work closest to the plant first, then move in a circle farther and farther out so the plant has room to grow. Especially the cucumbers. They need a lot of space.

The dirtier I got, the better I felt. It was fun to see something overgrown and unruly turn into an actual garden that will provide sustenance for our family. We worked hard and we made a lot of progress. There was a great sense of satisfaction that came from putting in that time and effort. And, the quiet time I spent on the ground helped me think about the weeding out that I need to do in my own life.

There is someone who I need to forgive. I know in my heart that I haven’t yet and I know in my heart that I need to and that I want to. Holding on to my anger and frustration is only making more weeds and more work for me. Holding on is doing me no good. I’ve been close. And, I am closer now than I was before. But there is part of me that is hanging on. Part of me is still attached to the righteous indignation that I feel at having been betrayed by someone whom I once loved and trusted. Part of me is still hoping for a happy ending. Part of me is secretly hoping that I do not have to forgive her ever, that I can just let the weeds overtake the fruit.

Relationships are like gardening. Results yielded are directly proportional to time spent. I know this. I’m hoping to find the courage to keep digging and get dirty. Forgiveness is tough stuff.

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?

Tarantulas, Sharks, Monkeys, and….Relapse

#ReverbBroads2012 Prompt for Day 2: What gives you nightmares?

In general, I am not afraid of spiders. I don’t like them, but I am also not the type to stand on top of the toilet seat or dining room table while some man comes in to rescue me from a daddy long legs. I just wad up a bunch of TP and attack it. Then, flush it away and moving on. However, tarantulas are in an entirely different category. Just the thought of one gives me goosebumps and makes me feel nauseous (nauseated?). I lived in the desert in AZ for a year and the entire time I was there I was irrationally afraid that a tarantula would make its way into our house. I think most of this fear stems from that episode of The Brady Bunch, when they all go to Hawaii, and a tarantula ends up on Peter’s face. Anyone who grew up in the late 70s/early 80s knows exactly what I am talking about. Creepy! I think it’s the hair. On the tarantula, not Peter 😉

I grew up in NJ. Our vacation every summer was two weeks at “the shore.” (For those uninformed, this is the real Jersey Shore, not that trashy MTV show that ruined it for all of us Jerseyans and forever tainted the rest of the world.) I have also seen the movie Jaws. So, there you go. Pretty natural fear of sharks. Although I am an excellent swimmer, I never ventured too far out into the ocean. Why risk it? Interesting side note, my husband is obsessed with the Discovery Channel’s “Shark Week.” Stays up until 2 or 3am because he.cannot.turn.away. Then he has nightmares for a week and I get to hear all about them. And then I have nightmares.

I think monkeys are creepy. I love chimpanzees and find gorillas fascinating. But monkeys creep me out. I think it is the annoying oooohhhh-ahhhhhh sound they make. Ugh. Cannot stand it. You know that scene in Toy Story 3 when they tape up the monkey so they can escape from day care? Sets my teeth on edge. Blah! I have to cover my ears when we watch it.

I hesitate to write this next part. I am trying hard to have less cancer and more hope in my life. I am trying not to make every single post about our family’s journey with childhood cancer. But, me being the rule-follower that I am, I feel I must really answer the question.

What gives me nightmares?

That my son’s cancer will relapse and he will die.

Our older son is a cancer survivor. This is a miracle. He is a miracle. He is a fighter. He is a survivor. He was stage 4, with a very aggressive diagnosis (Rhabdomyosarcoma).

It is hard to release these words to the universe. As if somehow saying them out loud might make them true. Silly. Irrational. Even saying that makes me sound crazy. I know this. But once your life has been touched by cancer, everything takes on new meaning, both good and bad. And, you don’t go back to your old life or your old self, because neither of them exist. While my son is two years off treatment and has been cancer free since October 2009, the fear of relapse is an absolute terror that I keep at bay every day. It is a dark shadow that creeps into my room and my dreams at night. When I kiss him goodnight, my heart stops. I bury my face deep into his neck and I inhale. I am trying to memorize his smell. I rub my hand all over his head, which thankfully now has hair. I put my hand over his heart and try to match its rhythm to my own. I kiss his cheek, rub his back. And I thank God that I have been given another day with him.

At night, I have dreams of him running across fields of sunflowers, flying kites on the beach with his brother and grandpa, swimming in the ocean with my mom, going to college, getting married. I have nightmares that all of this will be stolen from us.

I am not sure what to say next. There is no Hollywood ending to this movie. There is no bow to wrap this package. It is my life. I choose to fully live it. Nightmares and all.

Grief changes all the rules

Thanks everyone for your words and for taking the time to read my blog and respond to my #11 and #12 things….(post from January 5)

As a person of faith, I actually believe that when people die, they do go to a better place and that their earthly suffering ends. Especially, the kid cancer warriors. They endure so much, for so long. I absolutely believe that they are in “a better place” after they die. I believe that the kiddos are finally free. Free from their suffering, free to run, and play, and jump and laugh. I believe that in Heaven, our children are beautiful and pure again. But, I would never say that to a grieving parent because that is what I believe, not necessarily what they believe or want to hear.

Some parents I know also believe as I do and it is okay to share these dreams and visions with them. I have done so with a few other Mommas and I have treasured those conversations and always will. It is important, though, to remember that others do not believe that their children are in a better place. This is their right as the grieving parent. The world of childhood cancer has taught me that comforting a friend is about them and what they need, not about what I need or believe. Being a friend is about doing and saying things to make my friend feel better. It’s not about me.

It is funny to me (not ha-ha funny, but ironic funny, I guess) that I am writing a post about believing one thing and saying another. I usually preach about “meaning what you say and saying what you mean.” This philosophy often gets me in trouble (see previous posts about my big mouth). However, I believe that grief changes everything and everyone and in those cases, the old adages about honesty no loner apply. Grief cuts away part of your soul and it never goes back completely. I know this. I must honor this in others as well.

The 11th and 12th things I will never do

11. I will never say to another momcologist, grieving parent, or friend, “Well, at least (insert name of loved one here) is no longer suffering. S/he is in a better place.” Again, these words are patronizing and insulting to the person hearing them. Not everyone believes in an afterlife where a person’s physical and spiritual selves are reunited and restored. Not everyone believes in God or Heaven. A statement like this assumes that the person you are speaking with believes what you believe and that they might find some comfort in these words. Maybe. But probably not. It is my experience that people who say such things do not know what else to say, or have no personal experience from which to speak.

12. I will never use this forum (or Facebook or Twitter) to complain about my children. It makes me sad when I see these posts (too often, if you ask me). If you have time to post on Facebook about your child’s behavior, then you have time to get off Facebook and address it. Children are a blessing to be cherished. Children are the greatest gift and legacy that we can leave on this world. I want my children to look back on my words and be proud and maybe even a little inspired (if I am lucky). All that I do and say should lift them up, not tear them down.

10 things I will (probably) never do

Happy New Year everyone! As I continue to slowly dip my toe in the water of blogging, I am cheating and using some prompts from other people. There is a website called http://reverbbroads.blogspot.com/ where they posted a list of writing prompts for every day in December. As you can tell, I am very behind! Actually, most of the prompts felt too much like homework. And since I am done with my PhD, homework is no longer part of my life! Whew! However, the prompt for December 6 was intriguing to me and I continued to come back to it as I thought about what to write for the New Year. So, here it is, my list of “10 things I would never do.”

1. Never say never. The world of childhood cancer taught me that the world of absolutes does not exist. And, I have already done things that I never thought I would: shaved my head, connected with other momcologists in deep and profound ways, started a blog….

2. Go skydiving. I am afraid of heights and if I ever had that kind of disposable income, I am not going to waste it jumping out of some plane praying that my chute will open.

3. Never buy another Volkswagen. EVER.

4. Spend five years with an unreliable car that I hate. Not worth the emotional and physical stress.

5. Take a job where I have to commute more than 30 minutes one way. From December 2010 to November 2011, I drove 126 miles each day to get to work. Great position (I was a Director), great people, great students. But, the toll it took on me, my health, my family, my car, and my wallet were very taxing. Still recovering.

6. I will never go another year without some sort of regular exercise routine. See number 5.

7. Go back to school for a degree. There is a reason the PhD is called “terminal.” Happy to be a student for fun, but for grades, no way!

8. I will never say to another momcologist, grieving parent, or friend, “I can’t imagine how you feel.” Or, “I don’t know how you do it.” These words, to me, are patronizing. They put distance between the person saying them and the person receiving them. It is as if the person saying them is really saying, “Thank God you are experiencing that and not me or my kid.” I didn’t choose to have a son with cancer. We were drafted. Our choice was to fight like hell and win.

9. I will never say to another momcologist, grieving parent, or friend, “God doesn’t give us more than we can handle.” BS. I am a person of deep faith. I believe in God. I believe that God died for me and for my sins. But, I do not and never will, believe that God causes children to suffer or that God gives us our sufferings to teach us a lesson. The universe is random (more on this in a future post) and bad things happen to good people. And, there are in fact many people out there who have “more than they can handle.” This is why we must pay it forward and help where we can.

10. I will never not have a big mouth and strong opinions. This is my curse. I say what I think. Sometimes, I do it in the wrong place at the wrong time. I am getting better at apologizing for those times. This is also my gift. I will spend the rest of my life using my big mouth and my strong opinions to fight and advocate for children with cancer, increasing awareness and raising money for pediatric-specific research. Awareness=funding=research=cures.

Diagnos-a-versary

Three years ago today, December 12, 2008, the foundation of my world crumbled and all that I thought I knew was stolen from us. At approximately 5pm, in a very sterile, standard-looking patient room at University of Michigan CS Mott Children’s hospital, two oncologists and one pediatric surgeon told us that our three-year old son had cancer. That it had already spread to his lungs; “multiple nodules in each one.” That it was “treatable.” I asked one of them (whom became our son’s lead doctor and whom we now like and respect) if my son would die. And he told me, “With cancer, that is always a risk.” They shoved paperwork in my face (I think it was agreeing to treatment and that they could take a sample of my son’s tumor. But, honestly, I am still not sure what I signed that day.) Somehow, we made it out to our car in the parking garage. I have no memory of that. The next thing I remember is holding my husband’s hand while he drove us home in the dark.

My sister-in-law works as a youth minister. She loves God and does His work every day. She has tremendous faith and a gift for living in reality as well. Just this morning, she sent me a message saying that she was thinking of us today. I told her how angry I am, how cranky I feel. She told me that just because we are angry and sad doesn’t mean we aren’t grateful, too. Whew! That is exactly how I feel. She also told me once that God wants our honesty, not our piety. Well, then, here it is. Here it is in all its gut-wrenching reality!

Today, I feel conflicted, disjointed, off-kilter. I am angry, almost blindly so. As I write this, I am literally shaking with rage. My son was diagnosed with stage four cancer. The chemotherapy that was used to treat him is 25 years old and was created for adults. The list of long-term/latent side-effects is endless and devastating.

But, I also feel humbled, grateful, and hopeful. My son is still here with us. Every day, I work to be worthy of that gift. To be the best mother I can, to advocate for more funding and research for the children, to learn something from all of this, and to pay it forward.

Hope

“Hope is the thing with feathers that perches in the soul – and sings the tunes without the words – and never stops at all.” ~ Emily Dickinson

The further out from treatment Luke gets, and the more clean scans he has, the better his chances are for long-term survival and no recurrence. If Rhabdo kids relapse, it usually happens within the first year off-treatment. Luke is already 21 months OT and has had clear scans since October of 2009. He eats and sleeps well. He is doing well in school. He makes friends easily. He is kind and funny and smart.

Yes, I have hope; this is ironic, given that I was never a person who tended toward optimism. I have always been a “glass half-empty, but I am going to work really hard to make it full” type person. I have tended towards sarcasm and melancholy as covers for my fears and inadequacies.

Yet, in spite of myself, I have hope. My son is still here with us.

But, my son also had stage four cancer. So while I have hope, I also have perspective. And that is the rub.

Perspective

I so desperately want to “move on.” To let my guard down, to exhale. To believe that my son has been healed forever, that the cancer will never come back, or that he won’t get a different cancer later in life. (The statistics are grim and the chances of secondary cancer-as result of the very treatment that saved his life- are just as high. See: http://www.curesearch.org/ArticleView2.aspx?id=9268&l=9240)

I could choose to believe this. I want to choose to believe this. Some days, I do. But, the truth is..the raw, naked, awful truth is that this is not our reality. And this is certainly not my reality today. Anyone who has experienced any kind of trauma or loss knows that your old life no longer exists. And this is what cancer steals from families like ours: the blissful ignorance of every day normal life. The belief that the world is right and true, that bad things only happy to bad people, that parents outlive their children, and that if you are a good person, love your family, work hard, etc., etc., that you will remain unscathed.

As I write this, wallowing in my self-indulgent rage, there is a family in Massachusetts, who is burying their five year old daughter today. She fought neuroblastoma for almost three years. http://www.patriotledger.com/features/x890738774/Funeral-Monday-for-Charlotte-Kelly-5-who-died-from-rare-form-of-cancer

She died on my son’s birthday. She is being buried today, the three year anniversary of my son’s diagnosis. I am thinking of Charlotte Rose and her family. How by now, the funeral Mass is over and they might be on their way to the cemetery. How her parents might be holding each other to keep from falling. How someone, perhaps a grandmother or trusted aunt is holding her brothers’ hands and walking slowly, slowly to the spot where they will bury their sister, forever. How they are bracing against the wind, trying not to let it take their breath away. How that priest might be struggling to say something profound, to say anything that might provide comfort. Knowing, really that nothing will because so much of this day is wrong. Very, very wrong.

There is another mother in Minnesota who today grieves for her daughter. December 12th is her daughter’s birthday and the anniversary of her death. And still, I know another mother in Miami who’s daughter turns nine today. She is fighting rhabdo (the same diagnosis as my son) for the third time.

So, what I am supposed to do? Which path will I choose- hope or perspective? Is it an either/or decision? Can I actively live into both of these choices? I could live every day in fear, waiting for the other shoe to drop. Some days, I do just that. I let myself fall down the rabbit hole into the darkness of pity, doubt, anger, and fear. Diagnos-a-versary  might be one of those days.

Even as I write these words, I am embarrassed by how petty they sound, how self-absorbed and silly. My son is still here with me. I get to kiss both my boys every night and every morning; and I do, every chance I get. I get to have breakfast and dinner with them. I get to inhale their smell and hold them whenever I choose. I know too many mothers (and fathers) who cannot say the same. I know too many mothers who would give anything and everything to have what I have.

People from all over the world prayed for my son and for our family while he was in treatment. Thank you. The time you devoted to this, and the faith with which you put those prayers before God are a gift to us. Please do not ever stop. And, if I may ask another thing of you. Please pray for me as well. Pray that I have the courage to choose hope. Pray that I am strong enough to get out of my own way. Pray that I can acknowledge my anger and my fear. That I can name them, look them in the eye, and choose to not let them win.

Right before our son began six weeks of daily radiation treatment, our radiation oncologist told me, “Your hopes and dreams for him are not gone. They are just different.” Truer words were never spoken. The hopes and dreams I have for myself are not gone either. They are just different.

(The term diagnos-a-versary is borrowed from another 46 Mommas momcologist I know and love.)