Sep 302013
 

I Support Childhood Cancer Awareness

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH AND THAT MATTERS TO ALL OF US, BECAUSE . . .

At Momastery- we redefine words, and that reshapes our worlds.

For example – we used to think that mother meant someone who birthed or adopted or co-parented a child. Now we know that a mother is anyone who nurtures life. We used to think that sister meant someone with whom we shared the same blood. Now we know that our sister is any woman with whom we share this Earth. We used to think that our babies were the children under our roof. Now we know that every child is our baby. And just like that-  one label at a time-   we have redefined what FAMILY means.

We are one family and you guys – our babies are sick. And our sisters are wracked with grief and worry and they are too busy keeping the faith and care-taking to fight for what their (our) babies need. And so we need to fight FOR our sisters.  We need to raise hell FOR them -because that’s what families do.

Monkees, Meet Our Sister, Michelle and Our Baby, Cole

 On May 15, 2001, my second child was born. We had a perfectly imperfect week of adjusting to baby #2 but it was exactly the imperfection I had always dreamed of. I was loving life. Not the sleep deprivation, but life. When Aidan was a week old, Cole (who had just turned 3) started showing some viral symptoms…fever, fatigue, vomiting, crankiness. He was no better by day 3 of the illness so I dragged him along to Aidan’s 10-day checkup. The doctor was concerned about his coloring, some pinpoint bruising, and some enlarged internal organs (liver and spleen). He did blood work and said he’d let us know but that it was probably just viral. At 8pm the phone rang…it was the pediatrician. Not good. Never good when the pediatrician calls after hours. He told us to get to Yale Children’s Hospital as soon as possible…that Cole needed a blood transfusion and a bone marrow aspiration and probably had leukemia. And just like that, it all fell apart…that perfectly imperfect life. It’s sort of funny when I think back on it now…I packed an overnight bag for myself, my husband and the two kids because I really believed we’d be there one night and the doctors would realize they had made a mistake. But it wasn’t until 7 or 8 days later till we came home.

Cole

(Cole shortly before diagnosis…ironically playing with a bunch of medical equipment!)

We came home with chemo meds, anti-nausea meds, prophylactic antibiotics, meds to break up tumors, and steroids. We came home with a 3 year-old with a port, with a sore hip from where they took a chunk of his pelvic bone because they couldn’t even extract enough bone marrow out of his malfunctioning bones, with veins that had been poked and prodded and were now bruised. We came home with a new life…one we didn’t ask for, one we never saw coming, one that would either break us or make us better and stronger. It was a long two and a half years of treatment. Two and a half years of letting people pump poison into my child in the hopes he’d get better. Read that again, please – two and a half years of letting people PUMP POISON INTO MY CHILD.  (And frequently holding that child down while they did it.) Two and a half years (over 900 days) of countless spinal taps to let them pump poison into his cerebral spinal fluid to keep the cancer from spreading to his brain and spine, all the while knowing he would likely suffer learning disabilities due to it. Two and a half years (21,600 hours) filled with bottles and bottles and bottles of pills that my 3 year-old would learn to line up by the dozen on his tongue and swallow. And don’t forget the many bone marrow aspirations to check if the cancer was coming back. That’s right…to see if the poison had stopped working and the evil cancer was back inside my child.

Cole and Aiden

(Cole (approximately 3 months after diagnosis…all ‘roided up!) and Aidan)

Cole endured getting the chicken pox from an unvaccinated boy at preschool and being hospitalized on IV antivirals so the chicken pox wouldn’t kill him. Kill him. He endured “roid rage” from the massive doses of steroids…extreme fits of anger, superhuman strength, binge eating. (The ‘roids  were bad!) Oh, and minor things like weekly finger sticks, missing preschool, and daily nausea. We lost friends who just didn’t know what to say or do. We realized who really cared and who really didn’t (there were more of the latter). We struggled to maintain some normalcy. I told the preschool teachers to treat him like any other kid because I had to believe he’d be ok and I didn’t want him to be “a little shit” when he was older! (I don’t think the little old ladies at preschool saw that one coming!) I forced myself to eat and sleep and “carry on” because I wanted to keep nursing my baby…my precious little newborn who was born into this chaos. We did the best we could to continue living in the face of our child dying.

And then at the end of the long two and half years (1,296,000 minutes…and some of those minutes were REALLY long), treatment was over. Sounds like a happy ending. But it never REALLY ends when your child has cancer. Because YOUR CHILD HAD CANCER!!! And you never really believe it’s all gone or that it will never come back. In some very real and tangible ways, it is always with you. Cole will always have the scar from where his port was. He will always suffer from and deal with the anxiety of Post-traumatic Stress Disorder, with which he was diagnosed. He will always deal with some processing issues from the chemo they pumped into his brain. And we will always have the worry. A fever is never just a fever. A headache is never just a headache. And bigger yet, our eyes will never be blind again to the fact that childhood cancer is not rare. It is not something that happens to someone else’s child. It happened to ours.

Cole-15

Me and my survivor (age 15)

But, you know what? We were the lucky ones. We have our child, who is now 15 and one handsome, healthy young man. We knew this experience would break us or make us…and I truly believe it made us. Made us stronger as a family. Made me realize I have a mission, even though it has taken me a while to realize it. I’m “using what I’ve got”, and what I’ve got is a big, burning, growing fire inside of me and glimmer of hope that a few hundred thousand people who call themselves Monkees can help!

So, Monkees, this is where you come in. I challenge you as you go about your busy, crazy daily business to really pay attention…at the grocery store, the drug store, the craft store. I bet you’ll see at least one breast cancer awareness display…or more likely, a sea of pink. You may even get asked to donate a dollar to breast cancer awareness. But I guarantee you will not see a sea of gold or a childhood cancer awareness display even though September is Childhood Cancer Awareness Month. Now, I’m all for the boobs. I want to save the ta-ta’s, too. Really, I do. Three of my cousins have had breast cancer, as did my husband’s aunt and two grandmothers, and my very good friend. I love them and support their cause, too. But we just want equal time for our kids. I support awareness for all sorts of cancers. My mom had colon cancer and later died from brain cancer. My dad had prostate cancer. My brother died at age 51 from leukemia. My beloved (seriously) mother-in-law died this past April from metastatic  melanoma. My husband’s grandfather had lung cancer. Yes, that’s a lot of cancer. A veritable crap-storm of cancer. So, yes, we support cancer awareness in general. But my mission is to fight for the kids. Because of our story and because of these sad but true facts:

Cancer-graph

* One in 330 children will be diagnosed with cancer before they reach 20. I think of it like this…my daughter’s school has roughly 600 kids in it. 2 of those kids sitting at their desks today will eventually get diagnosed with cancer.

* 2/3 of survivors of childhood cancer deal with life-altering long-term side effects of their treatment, including an increased risk for other cancers.

* Cancer is the leading cause of death in children under the age of 15.

* Every year, 263,000 new cases of childhood cancer are diagnosed worldwide. That’s 720 kids everyday.

* Over 90,000 kids die every year from childhood cancer.

* Less than 5% of the federal government’s funding goes to childhood cancer research.

* The rate of childhood cancer has increased 21% in the past 36 years.

* Organizations like the American Cancer Society commit very little of the money they raise to childhood cancer research and awareness. For example, less than 1 cent of every dollar raised for Relay for Life goes to childhood cancer.

I spoke to a bunch of my friends who are cancer parents. It’s quite a special little “club” we have. And I asked them, “what do you want people to know?” We all agreed that we want you to be more aware. To realize this is NOT rare. To realize it could be your child, too. And to act. AWARENESS=ACTION=CURE.

As all of us Monkees know, our individual actions don’t have to be big and grand…our love is big enough and grand enough to make up for the “smallness” of our actions. So here are the “small” actions I ask you to consider now that you are aware:

1)    DONATE!!! But make sure you are donating to the right organization. We need more money for research because without it, there will be no cure. We suggest St. Jude’s Children’s Research Hospital, Alex’s Lemonade Stand Foundation, St. Baldrick’s Foundation, or The Pediatric Cancer Research Foundation.

2)    Find a local pediatric cancer organization or children’s hospital near you and volunteer your time. Make meals for local families, take part in fundraisers, donate toys for kids and gas and grocery store gift cards for families. Our local organization, The Pediatric Cancer Foundation of the Lehigh Valley, is wonderful. We are truly a family and we are always looking for caring helpers. (If you live in Virginia, Glennon recommends the amazing Fairy Godmothers, run by two Monkees!)

3)    Raise awareness in your community! It’s not too late to “Spread the Gold” before September is over or make a plan for next September. Let’s make sure that gold is as common as pink! Use social media, get your child’s school involved, wear a gold ribbon everywhere you go!

To read more stories about brave kids who have battled cancer, please visit http://pcflv.org/about/30-days-30-stories/. Thank you, Monkees. And know there is one thankful cancer mama out there who appreciates your love and action.

Michelle Zenie

(Michelle will be reading all of the comments today- so if you’d like to reach her about becoming involved in this fight- leave her a message. LOVE YOU, MY FAMILY. G)

 

Sep 262013
 

Be Still

Since I’m a recovering bulimic, I have to keep a close eye on my relationship with food. Lately, I’ve been struggling with food a bit. More accurately, I’ve been ambushing food. Struggle suggests resistance and the problem with food is that it never puts up much of a fight. It just sits there and lets me eat it all which is quite passive aggressive of food. It’s not totally food’s fault though. Food really just gets used by me as a way to numb myself when I get anxious. When I start to overeat, I’m really looking for peace, but since I’m not sure how to get that, I’ll take second best. Second best, for me, is a carb and sugar induced coma. Comatose on the couch = not feeling much. So, mission accomplished. We overeat because it works. Not in the long run, of course. but the long run is really just for enlightened people.

My overachieving therapist insists that in fact, the long run is for EVERYONE. Since she can’t help food be more assertive (since it doesn’t have insurance), she said I should start keeping “danger food” out of my house. In order to identify my “danger foods,” she asked what my go-to foods are when I’m anxious or lonely or sad. Cereal, I said. Once I start with the cereal, it’s really all over. If there’s a little milk left in the bottom I can’t WASTE it because I’m really responsible so I have to keep refilling and refilling the bowl until I’m almost dead. And so my therapist said- great – let’s start by keeping cereal out of the house –especially when you’re feeling vulnerable. Okay, I said. So…always? And she said yes, we’ll start with always.

I tell you all of this because I am about explain how social media, like food, can be threatening to my well -being. I’ve been thinking about this a lot lately, because an unexamined Social Media Life isn’t worth living. Inherently, I do not think that Social Media is any more dangerous than Rice Krispies. I just think that for some, Social Media + Human Nature can become problematic, so some of us have to keep a close eye on our relationship with it.If you are the type who can flirt with Facebook and General Mills and a glass of chardonnay without landing yourself in the mental hospital – well, congrats, really. Good on you. Consider this an opportunity to delve into the mind of someone less fortunate.

I went on an internet fast recently –  I spent 40 days without logging on to anything. Here is what I learned about how I had allowed social media to change me over the years.

  1. Social media had transformed me into an Input Junkie. Without social media, I experienced the same restless anxiety I felt while detoxing from alcohol. I was twitchy and fidgety. I simply didn’t know what to do with myself. During every un-filled moment, I felt the urge to “check” something – anything. Facebook, Twitter, my blog, Instagram –just give me something through which to SCROLL!  I had become unable to just sit with myself. I have Be Still tattooed on my wrist because I know that feelings, creativity, inspiration, wisdom, peace and the rest of the good stuff knock during empty moments – and that if we’re too “busy” to answer the door – they sneak into our souls through cracked windows and haunt us. We have to answer the knocks we hear in the quiet because it’s our LIFE knocking. But sometimes answering the door feels like too much to ask – so I log onto the internet in order to LOG OUT of my life. I habitually log on for the same reason I used to overeat and get drunk – to avoid what I know I’ll hear in the quiet, which might be a voice that requires me to feel or do something uncomfortable. So the internet has become my enabler. It keeps me from stillness and discomfort, and this keeps me from growing. Pema Chodron said, So even if the hot loneliness is there, and for 1.6 seconds we sit with that restlessness when yesterday we couldn’t sit for even one, that’s the journey of the warrior.” The internet allows me to avoid my hot loneliness, and that squashes a whole lot of my peace and potential for growth.
  2. I’d become a Validation Junkie, too. The hardest part of living without social media was remembering that my little life was enough, so I could just stay there and live it without asking for anyone else’s permission or validation. I realized that for me, posting is like asking the world – do you “like” me? Am I special enough? Am I funny enough, deep enough, smart enough, successful enough, love-able enough? How much do you like my opinion about this, that, and every other thing? Even if we’re looking to people we love for these answers we’re entering dangerous territory –  but when we constantly ask a cyberworld full of strangers if we’re worthy? Not good. It seems we’re the first generation to graduate from high school- to escape all of its competition and insecurity and desperation for belonging and attention – and then to voluntarily throw ourselves RIGHT BACK into it.
  3. Social Media lured me toward shallow and rigid thinking. In order to navigate the internet world – we learn to make things more black and white than they are in order to fit our thoughts into status updates and blog comments. When I was detoxing from social media, I realized that I was thinking in status updates. It seemed I had trained my brain to translate everything I experienced throughout the day into 140 characters or less. Everything complex became simple, everything beautiful became ordinary, everything three dimensional quickly became just two. A week passed before I stopped automatically translating every indescribable moment, sunset, or conversation with my kids into two sentences. I had to learn to stop shoving life into tweets and just let things be wild and big again.
  4. Social media threatened my only source of real peace and joy, which is gratitude. All of this posting about my life shoved me out of THE MOMENT, which is where gratitude lives. Choosing to live my life out on social media meant that I was never truly present because as soon as a great moment presented itself to me –I jumped right out of it. My brain said – Well, this is something remarkable, and then leaped immediately to: how am I going to describe this, and where? Facebook, Twitter, Instagram? With this, I moved right out of the moment,  into my head, and then onto my computer –  and just like that, the moment was lost. My kids might still be there, but I wasn’t. The sunset might still be there, but I wasn’t. And since gratitude is in the now and gratitude is the only path to joy – choosing to hop out of the now and into the cyber world is rejecting gratitude and stealing joy from myself. And so I had to retrain myself to live in gratitude again. To stay present with beautiful people and moments.  Because I’ve found that remarking on every remarkable thing just makes everything less remarkable.
  5. During my internet fast, I learned that Social Media makes me feel bad. Halfway through my fast I decided to cheat, because that’s just the kind of person I am. I logged onto Facebook and clicked on a post from another blogger whom I love and respect and for whom I wish All The Good Things. Her post was an announcement that she had just won a well-deserved writing award, and as I read her good news– I started to notice that my stomach was tightening up.  I “scanned my body” to check for input, as my yoga teacher taught me. And I noticed that my shoulders were sagging and I felt a flutter in my chest like a low grade panic. What the hell, I thought? What’s going on here? What was going on was comparison. I was comparing my life to hers and as they say – comparison is the thief of joy. Like I once heard an Olympic swimmer say: “I swim best when I mentally stay in my own lane.” No matter how satisfied I am with my stroke and my pace before I log on- Facebook shoves me right out of my own lane and back into the ridiculous hunch that I’m not good enough, that I’m missing something important, that I don’t have enough peace and success and that everyone else is living a more fulfilling, fabulous life than I am. If Facebook has this effect on us, we can forgive ourselves. Because all we’re doing is using it exactly the way it was intended to be used. Facebook was designed by college boys to decide how “hot” one woman was compared to another, and now we use it to decide how hot one woman’s life is compared to another’s. Sometimes.

When I was in college, I went out partying every night because I had a serious case of the FOMS (The Fear Of Missing Something). The FOMS is powerful and sometimes compels us to make less than healthy choices because we don’t want to feel left out. I wonder if the FOMS is what keeps many of us so closely tied to social media. On my internet fast I learned that I was right to have the FOMS, because I was missing something, and it was my real life. These people – the ones in my home and in the post office and in my kids’ school and in my neighborhood, they are real life and my real life deserves my full and undivided attention.

Last year, Craig and I took the kids to a high school football game. The students were hanging around in awkward circles, trying to get noticed or trying not to get noticed, just like we did in high school. But we noticed with sadness one major difference. EVERY KID WE SAW was on her phone. I understood. There is so much hot loneliness in high school that if I’d had a phone back then, I’d likely have melted into it completely to avoid my feelings. Maybe I’d have become addicted to my phone instead of food. But still, it felt sad to me. Because everybody was there, but not really there. Everybody was together, but not really together. Everybody seemed somewhere else and alone. I think too much life spent on Social Media can make us perpetually somewhere else and alone.

But I also can’t deny that social media has added so much good to my life and the world, too. Just last week this blog was used to raise $100,000 in six hours for families in need. The word for this Love Flash Mob got out through social media. And at least once a day, the people behind the little profile pictures on Facebook and Twitter remind me that We Belong To Each Other, and that DOES bring me peace. I often feel like support and love is actually flowing from you, through my computer and directly into my heart. I really feel that. I LOVE that. And so I won’t quit social media. Like everything else in life- it’s not good or bad. Maybe it’s just that there are helpful and not so helpful ways to use it. And so I’m going to explore how to use it helpfully and healthfully.  I’m going to write social media underneath food on my list of things I can either use to nourish or numb, to check in or check out. I’m going to set some healthy boundaries and keep a close eye on our relationship. I’n going to continue exploring how to use Social Media in Life Giving instead of Soul Sucking ways. I’ll keep you fully appraised of how we evolve together.

Now if you will excuse me- I have to go Facebook and Tweet the heck out of this post.
Love,
G
Damnit, It was only 5 Reasons. Counting is hard.

Sep 242013
 

It’s fall, and fall is really a better look for our family than summer is. Still, at the start of every summer I feel overly hopeful and enthusiastic. I decide that this summer I will be SUPER MOM and the kids and I will plan educational field trips and do crafts and science experiments and something about S’Mores and water balloons and making memories!!! It will be just like summer camp at our house. We will totally Carpe Diem the whole summer long! But then summer starts, and I remember, swiftly, that with young children it is really quite hard to carpe fifteen minutes in a row – much less an entire diem. And then I remember that I forgot to actually think of any crafts and that blowing up water balloons and handing them to small people to throw at each other never ends well for anyone.

This summer, twelve minutes into the first day of summer- Craig walked into the kitchen and two of my three kids were crying and we’d already run out of fun summer activities. In twelve minutes. And so I looked at Craig and said, “You know what is so much better than just like summer camp? ACTUAL SUMMER CAMP.”

I know they say money can’t buy happiness, but it can buy ACTUAL SUMMER CAMP and after a week I was unable to detect any difference.

And so, off they went every morning while Craig and I stayed home to work. We picked them up each day at 3:00pm and we were really glad to see them – but I’ll just go ahead and mention that 3:00pm till bedtime is still a really long time, especially because our girls were in FIGHT CLUB MODE this summer. No happy moment left behind. All fighting, all day.  All my signs that say LOVE WINS and WE BELONG TO EACH OTHER and all my standing on the couch and yelling “MOMMY IS TRYING TO START A LOVE REVOLUTION! GET. ON. THE. TRAIN!” were completely ineffective. Nobody around here cares. And so Craig and I had a summer sanity keeping strategy which included a daily yoga class for each of us while the kids were at camp. If I couldn’t make it to yoga, which is what happened most days since I’m better at creating strategies than carrying them out – I’d do a little yoga video at home for a few minutes. And then, when the kids got home and started fighting,  Craig and I would look at each other and smile and take a deep breath together and say, “No problem. Totally not going to freak out. I am So Zen. So Zen.” This was our mantra all summer: “Totally not freaking out. So Zen.”

One day, as summer came to a close (which it does every year because Jesus loves us), Amma threw one of her tantrums that we lovingly refer to as “Amma-geddon.”Every once in a while, something goes terribly wrong in Amma’s life (like,Tish breathes too loudly) and Amma throws a tantrum that makes me feel like maybe a demon is actually being exorcised from her body. And when this happens, we place her in her room to go ahead and work it out.  We live in Florida, but during these tantrums my parents in Virginia often call to ask how Amma’s doing. Because they can hear her. On this particular day, I let Amma yell in her room for a few minutes, and then I put on my riot gear, opened her door and said, “Honey, as soon as you calm down, I can start your time-out timer, and you’ll be able to join us again. You just need to stop freaking out first.”

And Amma yelled back at me- “ I AM TOTALLY NOT FREAKING OUT. I AM SUZANNE!!! IIIIIII AMMMMMM SUUUUUUZAAAAAAAAAAANNNE!”

Suzanne. That’s what she thought we were saying all summer. I am Suzanne.

Yes. Absolutely, friends. You may borrow this mantra whenever you need it. Mamas and Daddies – today- YOU ARE TOTALLY NOT FREAKING OUT. YOU. ARE. SUZANNE.

Just in case you’d like to put a face with the name, here’s Amma. This is what happened right after I called her “sassy.” I am still preparing the official transcript, but I believe she is saying: “I’m not sassy, girl, I’m not sassy. C’mon. What, what, what? Kick it. What? Word.”

I think maybe she wants to fight me. Whatever. I am Suzanne.

G