Zen on the Run

Back in 2004, when we were making weekly trips to Philadelphia, leaving our house in the cold and dark of early morning, I remember looking out the window of the car as we drove past the Delaware near Lambertville, and seeing the people running along the canal towpath.  Running and running. I so wanted to run, just run away from the nightmare we were living in—something about the act of physically running seemed so cathartic.

But I hate running, and back then I had a 6 year old fighting brain tumors and a 2 year old who wanted Mommy extra since things were so disrupted in our home and a 9 year old who was imploding.

Running wasn’t going to happen.

(I marvel at moms of young kids who get out there and run. If I got out for a walk when my kids were young I counted the day a major win and started imagining Olympic Glory as a walker).

Still, some part of my brain understood that there was freedom in movement, in running along near a river.

In 2006, one of the lowest points of my daughter’s illness, my husband realized that he seriously had to lose weight and get in shape, so as soon as we got home from my daughter’s Make a Wish trip he started running. 

Twelve years and countless half marathons, 5ks, and one full marathon later, Dave has not stopped running. He runs in rain and snow and gloom of night, he really should work for the postal service, nobody would ever miss their mail delivery if he took over.

While I use words galore to try and dig through the challenges of our life, Dave runs. And runs. And runs. For Dave, running equals zen. Always.

After cheering him on at a few races, and walking a few charity 5ks with the kids, I decided it was time. My G was off treatment. My 2 year old was in kindergarten.  My 9 year old was now an adolescent (so I NEEDED TO RUN).  My excuses were weak, but my desperate need to physically process the new moment of Life Off Treatment  remained strong.

 (Yes, off treatment should be awesome, but like Maria Von Trapp says in Sound of Music, “It could be so exciting, To be out in the world, To be free! My heart should be wildly rejoicing. Oh, what's the matter with me?”).  Not seeing medical professionals all the time was super unsettling, especially since the tumors were no smaller than when we started treatment.

Anyway, I dug out a pair of sweatpants and some old sneakers, and snuck up to the high school ball fields behind my house—and I tentatively galumphed around the soggy field. I didn’t even tell Dave for weeks that I was trying to start running, I was SO SELF CONSCIOUS. After all, I was always in the slow group for gym class, and once wore a paper bag over my head in protest…after college I would eat chips while one of my roommates vigorously did Jane Fonda videos. Ms. Fitness I am not.

But—it felt good. Not the running, that felt horrible, but moving, breathing fresh air, hearing the birds…it was good.

And thus it began.

Eventually I got actual exercise clothes, and real running shoes, and I ventured onto a road. I got a Road ID (hello, so many landscape trucks on such skinny roads!) and a headband that would stay in and a little handheld water bottle thingie.  After a few years I stopped always putting running in air quotes when I told people about my upcoming races.

Most of my running has been to fundraise for research for a cure, or to support friends who are sponsoring races to fundraise for research for a cure for NF or brain tumors or other smites.  I still don’t love it. I need MAJOR motivation to get up and go.  I only run slightly faster than global warming occurs. Officially, I run/walk--aka the Galloway Method (I love me a method). 

I only signed up for my first half marathon, having never run more than 4 miles, because my G had an MRI that looked like we’d be starting chemo again.  I was so angry I signed up for a race in defiance, like @#*&@^# you, NF! That actually was my training mantra (not kidding).  A week before the race a follow up MRI showed the tumors had stabilized and we had a reprieve.  That was awesome, but I still had to go run 13.1 miles!!

That 13.1 hurt. A lot. But crossing that finish line and NOT throwing up or collapsing was the most empowering thing I ever did. I beat my own doubts, insecurities, and memories of high school gym class. I DID THE THING. Not fast—but I did it. I got a medal and a t-shirt and EVERYTHING. I . Did. It.

And that kind of personal win IS a shimmering ZenFest.

So I did it four more times.  And honestly, by the last time it didn’t hurt more than it should have.

As of the last time—2016, when our family ran with my dad for his 70^th birthday-- I officially retired from half marathons.  The training exacerbates my anxiety—thus undoing the zen of movement. But this past weekend I ran a 5k with my now almost 16 year old—the 2 year old who needed mom all those years ago. Neither of us had trained, she relied on youth and I relied on all the other exercise I do, and both of us relied on the promise of chocolate at the end of the 3.1 miles…and it was good.  The threatened snow/rain held off, and I gave her my marshmallows while we waited for Dave to finish the 15k.

It was good.

For me, running isn’t a quick fix for zen like it is for my husband, but getting outside and moving, even to walk, to notice nature—that’s really the benefit of running for me. Running forces me into present moment awareness in a way few other things do.  Races ARE zen for me because of the Camaraderie of the Slow – My People! Everyone chugs along. Everyone supports everyone else. THAT is zen.

Movement helped me.  I know not everyone can run. When it’s cold out, I don’t run—but I have found that even being outside to meander with my snoofly dog helps with zen.  And honestly, in the cold months I use different kinds of movement to help with zen (another post).

I hear that spring may FINALLY be coming to Jersey—and maybe I can head out to my favorite nature preserve on a Saturday morning and run/walk slowly through the flowering trees and around the many ponds.  And after a run, I found the perfect zen chaser…

But that one I am saving for next post. ;)

Compassion and the Darkest Hour

During the early days after my daughter’s brain tumor diagnosis, I was incoherent.
I barely ate for 10 days.

I couldn’t sleep.

My husband and I sort of waded through a fog of despair. I don’t know how else to describe it, that slow motion/breakneck hurtling forward feeling of those first weeks.

In a matter of hours, we went from getting G a Happy Meal as a reward for being good for her MRI to playing phone tag with neurosurgeons in New York and Pennsylvania.

We were utterly broken, and we stood at the epicenter of a sea of brokenness—we are both from large families, and the ripple effect of this disaster battered a lot of people we love.

G is NOT an only child.  At the time, her little sister was 2, her big brother was 9. Trying to keep functioning for them, and for G, pretty much sums up those first weeks into months.

The first blinding lesson of all of this—after the “if a doctor calls you immediately after an MRI that is NOT a good thing” lesson – was that in time of devastation, good people show up.  Even that first day, that first horrible day, a friend of ours had planned to bring us dinner, knowing we had this MRI planned and it would likely be a stressful day. And as she brought that chicken divan to our door—and I was on the phone, crying, begging our pediatrician to just tell us what to do, what were we supposed to do??—I mouthed to her “please pray”.

And she did.

In the weeks following the diagnosis/shunt surgery/port surgery/ start of chemo/almost immediate vision loss/severe behavioral challenges/chemo fail/ regroup, people carried us. Meals showed up at our house regularly. G was inundated with Care Bears and crafts and sparkly things. Our 2 year old was cared for by family during our frequent trips to Philadelphia, 2 hours away. Family members stepped up to take our 9 year old to his baseball games.  I got taken of the mandatory “lunch duty list” at school (one of the very few things I instantly saw as a huge blessing of this awful diagnosis. ;) ).  Random friends of my parents went to G’s school to provide one on one help for her, because she was having such difficulties emotionally, academically, and physically while on chemo. Every day. They showed up every. Single. Day. For the entirety of the school year. For free.

Compassion. We saw compassion lived out, acted on, practiced at a level we had never witnessed personally. It was staggering, and humbling, and life giving.

Being on the receiving end of this level of compassion is not easy—it feels…hard. But we are so grateful.

Over the last 12.5 years since that terrible day, we have gotten better at asking for help—not directly for us, usually (that is still hard), but for research. For organizations that have blessed us, groups like Ronald McDonald House & Ronald McDonald Camp, Children’s Hospital of Philadelphia, Friends of Jaclyn, Camp Sunshine, the Children’s Brain Tumor Foundation, and of course the Children’s Tumor Foundation. We ask and ask, because we want G to grow old, we want her sister to grow old, heck, even though Dave and I are well on our way, I want him growing old with me and firstborn, too!  So we ask. And people have so generously answered us so many times and ways over the last decade and more. We are grateful. Nobody has to do that. We are sort of continuously agog at how awesome people are.

And it is in this spirit that I hope compassion prevails today, in the debate over Affordable Health Care. We know we are NOT entitled to people’s generosity. Generosity and compassion are gifts. We know this. We have been blessed, too, that Dave has great insurance at his work, and all of our medical yikes, the 50+ MRIs (at over 10k a pop, usually—and that is only for one of our NF kids), the multiple surgeries, the hospital stays…those are covered, to a great degree. And we are so, so lucky. G is 18. She will be 19 in July. When my 6 year old G was diagnosed with massive hydrocephalus and multifocal brain tumors, we could not see this day. We are almost incoherently grateful that she has gotten to grow up.

In a few years, she will have to take on her own medical care—our insurance will no longer cover her. The ongoing challenges of the dual brain tumor/NF diagnosis are many, and in every way, shape, and form are the legacy of her pre-existing condition.

 I try to avoid political discourse here; that is not what this page is for. I avoided social media for two months during the election, the political discourse from friends on both sides of the spectrum was so demoralizing to me.  Still, as NF and brain tumors have intersected in our family’s life, so does the issue of insurance and our G’s future. This is personal for us, for G. We have fought so long and so hard to care for her, to help her grow up—and we can try to provide as best we can…

But at the end of the day, we have to appeal once again to the compassion of people we don’t know.  Strangers who, on social media, say things like “your sad story doesn’t obligate me to pay for your health care” (this was in response to Jimmy Kimmel’s monologue about his newborn son).  While this statement is a bit shocking—it is true. Very true. Our sad story obligates no one.  We totally respect this. We can truly only appeal to compassion and generosity, fueled by the conviction that our children’s lives—both in my family and in our community of smite-- are worth more than any actuarial calculation about insurance risk/benefit.

I hope and pray that our elected officials (I called ours!) can see with eyes of compassion, and understand that behind every statistic there is a human being, who has a family and community that loves and values them. Just as the picture of that little boy on the shore in Greece made people understand that refugees are not faceless threats to society, but young children and families desperate for a life free of violence and upheaval, I hope the stories many parents are sharing will help people see that “pre-existing conditions” affect children and adults who just want a chance at a healthy life—folks who make the world a better place by being in it.

Policies have consequences. Nobody is asking for entitlement, just for that compassion that makes us most human.

Thanks, for the millionth (and still not enough!) time to all of those people who have shown us so much compassion over the years. You all have helped G get to grow up. Thank you. I hope that she does not have to fear a future where she can’t afford medical care—I really have to try and trust in the continued compassion of good people everywhere.

Me Vs. ChocoBunny

So on Saturday, I made a vaguely top secret trek to the best chocolate place in Jersey—the Fudge Shoppe in Flemington. 

(As soon as I walked in the door at home holding a plain, unmarked brown bag, survivor kid said “HEY, YOU WENT TO THE FUDGE SHOPPE?” Ahem. Top Secret. Ish.)

When my survivor kid was in the early years of her journey, we drove by the little barn-like building that says FUDGE in giant letters every time we drove to Philadelphia for treatment or scans or oncological whatnots.  One day we stopped in—and the delightful older gentleman who founded this store offered us free samples fresh fruit covered in chocolate, and we were instant converts to the Church of Fudge Shoppe.

As part of my radical plan to “Take Back April 5”, I thought about going back to Flemington (a 35 minute drive) to get the darn giant chocolate rabbit that I had vowed to get if the chemo trial was not a fail.  But the day was busy, and a special trip for something way too large for a random day just didn’t fit my schedule.  But the idea stayed with me during my pre-Easter pilgrimage yesterday…

And there, now within reach (not on top of a high shelf, as it used to be displayed 5 years ago), was the giant ChocoBunny. That rabbit is magnificent, literally 3 feet of molded milk chocolate old school awesomeness, made with a lot of love.  Decorated with buttercream accents and candies attached to the bunny’s basket, the rabbit stood sentinel over all the smaller chocobunnies and crosses and dinosaurs (yes), Easter pops, and filled eggs of every variety. 

For five years, this beautiful ChocoBunny stood as a sad symbol of our chemo defeat.

But yesterday, as I stood in front of ChocoBunny, clutching my basket already too full of treats (life lesson, DON’T go to the Fudge Shoppe before breakfast), I just thought, "wow, that is pretty awesome to behold, but at $250 it is um, just nice to behold". 

(Five years ago I had no clue how much this edible art COST!! YIKES! But probably still worth it.)

Thus I continued choosing regular Easter hoorays for my family while humming a happy little hum.

Like these. These are from the Fudge Shoppe Webpage.
They are so delicious. Sooooooo delicious.

Freedom!

I am still a bit agog at the grace of this moment, "getting over" Sorafenib. (As long as no doc says something stupid like, "oh, we knew there were problems with that study". Just not that one again.*cough. That was not a great moment.) But really—FREEDOM!

Agog.

I didn’t need the massive ChocoBunny to prove that the disastrous trial is just a memory.

SAY WHAT, WILLIS?

Truthfully, the free sample of choco-covered pineapple—the pathway to my original conversion to this chocoshop-- admittedly did not hurt my newfound zen.

So in this step in my attempts to keep Movin’ Right Along, it’s Me- 1, Random Bad Associations -0. And since EVERYONE in my family is going to end up with Fudge Shoppe chocolate, it’s really a win for all.

And a win that involves really good chocolate from a little family business—THAT is a win indeed. :)

Taking Back the Day

I had a radical idea yesterday morning, during one of the 57 drives I do each week.

I can take back April 5. 

Take. It. Back.

In our family story, April 5 stands as one of the Quadrangle of Worst Days Ever that we had (right up there with Diagnosis Day and Possible Malignant Transformation Day, nearly tied with Progression After 5 Years Off Treatment Day…). The day haunts me.  And Facebook keeps helpfully reminding me of how nervous we were before April 5, 2012,  how desperately sort of hopeful we were, even though we knew G didn’t seem to be doing well.

5 years ago, April 5’s MRI obliterated our hope.

I know. That’s a long time ago.

Here is the problem: I am a History teacher. Remembering the past is my JOB. Literally I get dollars to dissect the past with nearly 70 students each day.  The great irony of what prolonged stress does to memory is not lost on me.  Thank God for Post-It notes. But the varied dates of medical smite that fill a decade and more of our family history—I can’t shake those memories, and trying to understand them, trying to gain some kind of perspective is the only way I know HOW to manage them.

Or denial/avoidance, but that is another story.

Our neuro-oncologist used to routinely ask me to “tell our story” to new medical students, knowing that it was my weird party trick, being able to recite a litany of dates/chemo fails/statistically improbable complications/more dates/random sarcastic jokes/things that only happened to our G/dates and dates. I can’t remember what I did yesterday, but the medical yikes—I remember.

So my drive time idea was pretty radical.

Take back the day.

Some days can’t be taken back. Diagnosis day is always going to be tough, it’s the center of our personal timeline of Before Tumors and After Tumors (we are now in the Year After Tumors 12.5). We remember it as a survivorversary, but it’s still a tough one to navigate each year. Progression Day is also tough. Restarting EVERYTHING with a teen who could understand things much more than a 6 year old could was brutal—especially since I had to be the one to tell her that we had to start up chemo again, after brain surgery the next day. I am not sure I know how to reframe that memory of the moment with my child in a waiting room.

But April 5—I can take that day back.

Because yes—it was horrible. It was a dark, miserable, son of an unprintable punctuation marks in a row kind of day. It was a day ONLY describable in 4 letter words that need to be spat out. BUT…

Today it doesn’t matter.

Unless docs talk about that trial in what seems to me to be a cavalier manner (*cough, which never, ever ends well), it doesn’t matter to our family.

Because 5 years later, G’s tumors look better than they have in years. Not that tumors really ever look good (“spring ’17, the tumors are wearing a subdued palette of less enhancement and maybe even slightly less mass effect! Stunning Detail!”)—but the horror of that day IS a memory. The next chemo shrunk that horrible, catastrophic growth. Nothing has been easy since then—G’s school challenges and ruptured appendix and whooping cough fest were all AFTER this day—but WE ARE STILL IN THE GAME.

And that merits taking back the day.

I am not exactly sure how to do it. Wednesday is our “nobody home for dinner” day, and somehow in my mind taking back a day always involves food. But even if I just try to remind myself all the day, Hey, WE ARE STILL IN THE GAME. G IS DOING GREAT. CADBURY IS IN THE CLOSET. WE HAVE A DOG. IT’S SPRING. I JUST GOT A SWEATSHIRT WITH HAPPY BIRDS ON IT. Pretty much anything to stay in the moment of today…

I consider that a win.

So we’ll see how it goes, this radical experiment of mine. Can I NOT wallow? Will I eat my 3^rd bag of Cadbury? Does anyone else in my family even remember the day? Does that even matter?

But come hell or high water, I am going to try to take back April 5, to have it just be a springy day of promise and potential. And Cadbury, likely.

Taking back the day.

Let’s do it.

*****************

So I wrote this last night.

I woke up this morning. Birds are singing. Dog pooped right away (without needing to sniffle every blade of grass on our street).  I only had to yell at 3^rd born three times to get her out the door for school.

And you know what I realized? I am the only one here bound by that day. Nobody else in the house remembers. And as I walked the dog, and felt some of the old erghleyugh rising up, I looked at the trees, the birds, the spring flowers starting to bloom, and I know that old April 5 is just that. Old.

And FB reminded me this morning…yes, that day was awful. BUT—the rememberings are all posts by our friends and family who were hurting FOR us, praying for us, rallying hope and good will in our direction—usually marked with pictures of my smiling warrior.  THAT is what today needs to be about. I know those folks will likely all get reminded about this today too—

hey everyone. this is Kristin's sister Laura posting this for her: G's scan was not good... Thank you everyone for praying. We are going to Plan B and G is actually taking it remarkably well...we are trying to be super positive for her.

Thank you, friends and family.  We love you all so much.

Today I WILL let myself off my Lenten car silence thing –there will be music. I will eat Cadbury. I will take this day back as the day our friends and family stood with us and held us up when we were falling.

We’ve had 5 April 5ths since that bad one. I claim those as a win.

NOW let’s break out some Cadbury and some Safety Dance and get this day going.

Miracles Remix

Miracles Remix

Today’s Gospel at our Church was the story of Jesus healing the blind man—this story always grossed me out a little (spit and mud? Ew), but at the same time moved me, especially once I had a child who was going blind day by day in front of me.  As the deacon spoke during his homily today, my mind wandered back to when G’s vision was failing at a rapid pace.  Back then, if Jesus had offered some spit and mud for G’s eyes, we would have added that to the chemo regimen and showed the Pharisees some Jersey style onco-mom attitude if they had a problem with G getting healed on the Sabbath.

You wanna piece of ME?

Obviously, that did not happen.

But still—G’s vision improved. We aren’t sure why. Anecdotally, I think it had to do with changing chemos. Her tumors never got smaller after that first chemo fail, or the second chemo fail, or the third chemo stability/bone marrow burn out.  But her vision improved.

We gave BACK the Brailler.

A Brailler. G used to cheat and look at the dots to read things.

The only time I ever celebrated cheating. ;)

That was a miracle.

It wasn’t the miracle we prayed for. It wasn’t a clear cut miracle of complete healing or woohoo. But the day G told me she could see stars… “ you know, those tiny white things!”…that was a miracle.

She still has no peripheral vision in any direction. Her left eye still is weak (to her sense, she can’t see out of it, but she actually can). Within a narrow field of her right eye, she is correctable to 20/30. That is a miracle, based on the “counting fingers” report of 2004.

Making peace with miracles remixed is an ongoing work.  We’ve had other Miracle Remix kinds of days—March of ’06, when we found out the weird tumor thing G had going on after 18 months of chemo had NOT become stage four gliomatosis cerebri (a game changer, prognosis wise). We got to restart chemo #3. That was a miracle. The next 6 months AFTER that miracle day were brutal (Transfusionfest 2006, neutropenia-induced hospitalization, allergy to one of the chemo drugs), but it WAS a miracle.

My girls, with neurosurgeon Dr. Storm (the only guy

allowed in G's brain) and Research

genius Dr. Resnick(and his daughter), at Camp Sunshine.

Miracle Monday, 2012 – the day we found out the Avastin/Irinotecan/Temodar mix had dramatically reduced the tumor mass that had explosive growth while G was on the clinical trial.  I literally almost unraveled that day. That was a LEGIT miracle, we had never seen that kind of shrinkage EVER. We got to do nearly another year of that chemo, and it kept working (and has continued, after the fact to keep G’s tumors stable). Miracles.

Scientific progress—miraculous. Inspired. Fought for. I will take any kind of miracle that comes, even if it is ultimately in IV form in a day hospital, or in the skilled hands of a neurosurgeon. 

For me, one miracle--being able to talk to God again without using colorful language. And I don't mean red, orange, yellow, green, blue, purple. Or chartreuse. THAT was a different kind of healing miracle. Not the one I prayed for, but a gift that helped me keep on going in the face of extreme medical yikes back in '05 and '06.

yeah, not so much. I had no issue with

Jesus, just God. This is why I don't teach theology.

That guy with the muddy and healed eyeballs? He was grateful.

I am grateful.

Not going to lie, I would be totally cool with the complete healing kind of miracle. That just isn’t the kind we are going to get, and I have made peace with that, really.

But I do wonder, some days, if I am doing enough with the miracle of time we have been given.  Having more time is truly the greatest miracle of all.

As I type this, G is pondering what classes she should take at Community College (“Mom, what is “Aperture in Photography?”).

Time is the greatest miracle.

I don’t want to waste it.

Me, the Big Rock, and Mount Yikes--Movin' Right Along--Again

She Bloggeth!

Ok, so that is a little melodramatic, but subtlety has never been a strength of mine. My loud face gets me in so much trouble at faculty meetings, I legit have to stare at my notes whenever any person is talking—because even if I say NOTHING, my stupid loud face says all the things that one should never say at any meeting. 

But I digress. I haven’t even started, and I am digressing…this does not bode well.

BUT—I am determined. Words are both powerful on their own, and empowering, and my inability to write ANYTHING after telling our family story two or three years ago alarms me.

Our penchant for falling into statistically improbable bad stuff just finally caught up with me, I guess, and I lost all my words.  For the last twelve and a half years I have been pushing a Big Rock around. Sometimes I can really get it rolling. Sometimes I end up squished under it for a bit (ok, for years at a time,  2004-2006, and then for a couple of months in the summers of 2008,9,10, then 2011-2013, then June 2014, then three months of 2016…*cough).

 Recently, I just got stuck. Kind of like this:

Obviously I did not fill the last few years with art lessons.

And by recently, I mean for like, two or three years. Maybe longer.

Last year my Survivor Kid had whooping cough, technically “pertussis-like syndrome” since she had been vaccinated—hers was a “mild case”.

On a couple of occasions last winter/spring we thought we were going to lose her.  Like, in my kitchen. Mild my fat fanny. I can’t imagine how horrifying the full blown version is…

For whatever reason, that particular pitfall on Mount Yikes really derailed me.  We had made it through brain tumor hell AND high water and a stupid regular illness FOR WHICH SHE HAD BEEN VACCINATED could make my kid choke and turn blue in front of us?  The ER doc who finally gave us a diagnosis was remarkably understanding about why the two psycho onco parents in front of her were in full blown HELL NO mode.

mom note: the whooping cough booster seems to last about 5 years, so...you all might want to check on that. And just because one HAS whooping cough does not mean they are now perpetually immune. Fricka Fracka...
Even a year later, Survivor Kid’s little sister still gets twitchy any time Survivor Kid coughs.

This situation put about 4 tons more on the Big Rock, and added 15k elevation to Mount Yikes.  Mount Yikes was already pretty steep, school was tough, work was tough, life was life. Everyone has tough. That is what life is…we certainly have zero monopoly on Mount Yikes…

….And then we lost some of our long time BT and NF friends in the fall. I still don’t have words for that. So I shall just speak that dark moment, that moment that flattened me for a month, and try to keep pushing up the hill.

Since early fall I have been working through things, really focusing on exercise, and yoga (remarkably helpful, even 20 minute “Yoga for The Ridiculously Inflexible” videos that I do at home, by myself, where only the dog can laugh at me.  I talked to a doctor, and got some help getting my personal chemistry back in place.  I am trying to read things that will help or inspire me—even if I haven’t OPENED Full Catastrophe Living, it’s waiting here to be read.  I am talking to God. I am making an effort to connect more with other people, because I kind of moved into a bit of a cave on Mount Yikes during the last few years.

It is a work.

But I will do it.  And – well here I am. Writing something while both of my girls are at their new schools, doing great. My son—at his school, doing great (no random broken bones in January this year, well, not for him, just for third born. But we managed it.)   I am planning a two day getaway with Dave for the summer, it’s been two years and we need to just have a couple of days near the ocean, just being. 

The work is working. The Big Rock is slowly moving.

I still have trouble reading my words about Survivor Kid and all our family went through. We still live with the late effects of that journey every minute of every day. I read things I wrote years ago, in our life “Before Brain Tumors”, and I almost can’t believe that I wrote them.  Nothing like being at a youth group thing and realize folks are acting out a funny skit you wrote 42,000 years ago.  I used to be really sharp and funny, not just scary.   And you know what, I can work back there again. This is a first step.  Not perfect. I am trying (as always!) not to let the perfect be the enemy of the good.  Let's do this.

Big Rock has gotten mossy from sitting in one place for so long.  So let’s get moving.

Making Sense of May

So May. Here we are again. 

I am tempted, some days, to say “May” like Jerry Seinfeld used to say “Newman”, this month of double awareness.   I don’t know why some days the weight of this gets to me, that NOW WE NEED TO BE AWARE OF NF AND BRAIN TUMORS. I can’t remember the last day I was NOT aware, so, what’s with May?

Especially since so many of my friends are in both of these communities, social networking is overflowing with awareness facts, pictures, graphics, etc.  I find that inspiring, motivational, depressing, and overwhelming all at the same time.

See why it is hard for me to even pick out a paint color? I am perpetually conflicted. 

 Reading through my blog from last year, where I describe our family’s journey…ugh. I know that was an important thing to do, but it is way past “merely a flesh wound!” , if you know what I mean.   If you want to know what life is like with NF and brain tumors (and why I am scary), that’s a pretty good place to start.

But I had a thought today while running, once I got to a quiet side street where I was not just thinking “yikes, another landscape truck? Dodge! Dodge!” (meaning my action, not the truck brand).  Today is gorgeous. Spectacular. Right now it’s about 63 degrees and brilliantly sunny, the forsythia are blooming and the flowering trees are flowering, I could hear birds chirping and squirrels scratching at trees (I double checked, I had a moment of worrying that it might be a larger woodland creature, but no, just a squirrel). It was GORGEOUS.  I don’t like running, and today I really felt tired, but the beauty of the day just hugged me.

Two days ago it was 43 degrees and raining here, like Noah digging out plans for an ark kind of rain.   Roads are still closed by us due to flooding (I toyed with the idea of adding a mile to the run to go SEE the flooding, but then my body told my brain to shut up and head back home).   This winter was epic, even by the standards of the northeast, we had so much snow, my early perennials were very late this year because the gardens were buried under 2 feet of snow until March.

Youngest child & dog, walking ON TOP of 15 inches of snow. Cold. Cold cold cold.

The dark, the cold, the endless precipitation—it was a tough winter.

my viburnum after storm #493

I don’t know what May is like in other parts of the country.   But here—well, in another week or two we’ll be past the danger of frost and I can plant annuals in my flower pots.  Our yard finally needs to be mowed for the first time this year. Everything that was brown and frozen and ugh is now alive and lush and beautiful…

Not fully grown, my evening primrose are still only an inch off the ground, the butterfly bush is just getting its first green buds, the hydrangea and viburnum are just showing where their leaves will burst forth in a few weeks. By the end of May, this potential green will be realized. 

my viburnum today, buds galore!

In Jersey—and much of the northeast, I figure-- May is a month of rebirth, of everything finally emerging from winter and bringing relief and hope that summer really is around the corner.  Winter (especially this year) is so long and so hard, it makes us appreciate so much more when spring finally comes.  The air just smells good today.  The birds sound so happy (the winter was so quiet).  I am so happy that May is finally here!

I had this thought, while running, a thought that having both Brain Tumor and NF awareness in the same month is really so meaningful…because May is so much a month of hope. We’ve had terrible losses in May, terrible grief over friends we love, lost to these two awful things…but there is still hope in the midst of that…hope that our love and memory for these children and adults can fuel our work for a cure.

Brain tumors and NF are both scary frozen wastelands a lot of the time. Nothing about either is nice…BUT within the communities that have grown around these dastardly beasts there is hope and love and a sense that we are moving towards summer.  Right now we may only see potential for a cure, for treatments that work without destroying a child’s future, for understanding the cellular mysteries NF and brain tumors hold…

But just like my viburnum and my hydrangea, that potential WILL come to fruition. I really think it will—and the hope and new life and green and sunshine of May are a WAY better time to think about these awful things, to see them in the sunlight of hope. 

By August the sedum this owl is guarding will be taller than the owl.

Ok, that sounds maudlin, but I really don’t mean it that way.  If both months were in February I would have to hide under my bed.  Having May be the awareness month for both of these things that have truly changed everything about our family is in some ways a blessing.  The beauty of this month can be a hopeful lens through which to present and understand the realities of brain tumors and NF.

We appreciate the green and warm and sun so much more after the awfulness of the winter we had.  And after the awfulness of rather a lot of the last almost 10 years, I appreciate the hope that is fostered in this month of May.

Next Tuesday is MRI day. We may be basking in sunshine or once again hoping for that potential yay to find us again…I don’t know. But I am trying, fighting against my wintry self to see the hope in each day of May, instead of the painful reminders of what’s past…to see the hope.  

Live. Hope. Find a Cure.