Rocks, Thistles, and the Work

A buck fifty for a spackle bucket full of rocks or thistles seemed like big money back in 1986.

Our new home stood on what had once been a field full of feed corn for one of the last herds of cows in our town. The completion of the interstate would open up this rural spot in New Jersey to rapid development and (on the other side of town) McMansions a-plenty. Our home was a 1980s style box, all square and without character to speak of, a mother-daughter sort of house surrounded by rocks and thistles in an unforgiving clay that dyed playclothes a vague sort of orange-y brown.

We felt like homesteaders on the frontier. This town had no sidewalks or community pool. WHAT?

My parents, in an effort to tame some of the front of our acre and a half of property, paid us kids to gather rocks and thistles. It was hard work, but gratifying—and a buck fifty could purchase a soft vanilla cone with rainbow sprinkles at the local ice cream place.  Eventually grass took hold.

By the early 90s we had grass and a tree in our back yard!

My parents planted a vegetable garden and some trees, mostly flowering pears (before we knew that they fall down eventually) and fast growing willows in the swampy back yard. One summer my dad built a retaining wall along the driveway to give the weird slope some structure against the inevitability of erosion.

Dad's wall today

I moved out, went to college, got married, had a kid, and realized that our one bedroom apartment could fit multiple times inside that giant rectangle of the small side of my parents’ house, so we moved in. We never thought it would be permanent, but the real estate market in Jersey in the 90s was insane, so I planted flowers in pots at the base of the deck stairs that led to our door in the rear of the house, and tried to cover some of the gravelly ugh that persisted despite my parents’ years of work.

Eventually we decided to make some improvements to our half of the rectangle, once we decided moving would be financially irresponsible…and then G got sick (literally the day after we started work on turning the garage under our apartment into a playroom/office—we said hello to the contractor as we left on our first trip to Philadelphia).

For several years after G’s diagnosis, I dealt with stress by moving rocks in our yard.  I moved several tons of decorative rocks to cover the ugly construction gravel under our deck. I dug one garden, then another, then another, hacking away at the clay with a pickax, spending all my angst and despair working the earth. We added good dirt to the clay until things would grow. I built a patio (with some digging help from my brother), placing each paver in a tetris-like pattern until I felt it looked right. I planted perennials, then spread the plants once they matured.

All my black-eyed Susans came from 

one original plant.

I dug holes for trees to try and give us some shade against the western exposure’s heat. I worked and worked. The ugly slope in the back of the house I turned into a rock garden, digging out the overgrown weeds and those immortal thistles, lugging rocks to create little burms.

I built a fire pit out of stone, again finding peace in the heavy lifting.

My spouse, too, works the yard. His is more a work of pruning the overgrowth, saving baby trees in the once-field behind our property by clearing out around them so they can grow. He mulches and shapes and plants, too, in a different way than I do, but he will spend hours and hours outside, doing the things. And now we pay our burly firstborn to dig the holes for new trees.

The tidy mulched areas around plantings are Dave's work

We don’t always work together—our style of working/ways of seeing are very different, and it is way less zen to move rocks when someone is saying, “wait, why are you putting that there?”. I move things and then hope he likes where they end up once he notices.

My parents upgraded their garden fence (we have so many hungry deer and bunnies and groundhogs), and put a patio in the front yard surrounded by flowers and shrubs. “Drinks on the veranda” is what we all call the lovely hours we now sit out there.

34 years after our rectangle went up on that barren scrabble of rocks and thistles and some old trees, our yard is gorgeous. It took so much work, some successes and failures, but now, it is gorgeous.

Panoramic of my yard this afternoon--the same space as the first picture. 

We need to do this in America, too.

After the news of the Dayton shooting, so close on the heels of the El Paso shooting, I went and sat on my patio, surrounded by plants and butterflies and hummingbirds. I just needed to sit in the peace of my garden. And I started thinking about the rocks and thistles and ugh of years ago, and how we had to work and work to make it better.

We need to do this in America. We need to work to make things better. Can we fix all the problems? No. Is there a simple solution? No—but there are steps we can take, quickly, buckets of rocks we can fill to prepare the nation’s figurative soil for improvement. We have the angst and pain right now, we MUST USE IT.

I try not to be political here, and I truly don’t mean this to be a political post. It is a human post, a heart post.  We have to look out for each other. Universal background checks seem like a pretty easy bucket of rocks to carry out. Banning weapons that can kill 9 people in under 30 seconds seems like a pretty obvious pile of prickly thistles to rip out. Will this make the nation perfect and peaceful overnight? Of course not—but just like in my yard, we have to start SOMEWHERE.  

Old ladies should be able to go run errands on Saturday morning safely. Soccer teams should be able to fundraise without worrying that their table is in the immediate line of fire for a shooter coming through the door. Parents should not have to die in a freaking Walmart while trying  to protect their infant. Folks out to enjoy a summer night should not have to wear a bullet proof vest just in case.

When I was a kid, we did not worry about these things. When I first started teaching, we did not need to do lockdown drills or active shooter drills. We did NOT.  

I am a historian. This is NOT what America was supposed to be in the minds of those who founded the nation. It's not. We have to work on this garden and get our plantings in order. It hurts my soul to see this happening again and again.

We may need to try some things to see what works. We may find that certain ways of doing things still bug us (I frequently tease my spouse about how he likes to landscape the woods—like, WHY ARE YOU MULCHING IN A SMALL FOREST??? WE HAVE A HUGE YARD? GOD PUT THOSE LEAVES THERE! My poor tidy spouse likes order so much). But we have to do SOMETHING.

We have to stop actively planting or nurturing weeds of horrible rhetoric, or overlooking when elected officials do—words matter, words matter so very much, and like weeds, poisonous words spread. We have to start somewhere.

I believe in the power of prayer, I also believe God wants us to do what we can do.  Thoughts and prayers are a good first step, but if I just think about the rocks in my yard and pray for the weeds to go away, that is not enough. Action on my part is required. Action on all our parts is required to make any kind of substantive change.

If we work together, and work consistently, and vote responsibly, over time things will grow better.  I have to hope that they will. 

I still find thistles in my gardens, and I think I let my Joe Pye weed get a little too out of control (but the butterflies and bumblebees love it, so I feel little regret), but I can deal with smaller problems when they pop up now that we’ve been working this soil for years. Why on earth can we not do that in America? DO SOMETHING!  We can preserve our second amendment rights AND protect our citizenry (which is what the second amendment was originally designed to do—not to facilitate a free for all in terms of weaponry).  We just have to start somewhere and do something.

Ultimately, I can’t hide in my garden forever. I have a responsibility as a human being to move rocks and thistles beyond my own yard. Please, please can’t we do this together? The reward is so, so much greater than a buck fifty.  Let’s plant peace. Let’s plant mutual respect. Let’s plant listening and hearing and helping.  Let’s do the work, one rock or thistle at a time, towards an America where we can all just be in peace.

All are welcome to come sit in my garden with me. Anytime. 

To See and Be Seen

           

A favorite song of mine is Mr. Cellophane from the musical Chicago. So much so that I think I’ve quoted it in this blog before.

Cellophane! Mr. Cellophane

Shoulda been my name, Mr. Cellophane

‘cause you can look right through me,

Walk right by me

And never know I’m there.

This song is a lament, not a celebration.

Being invisible hurts.

Ok, so this being a favorite song is maybe more related to my non-existent self-esteem/social anxiety thing that plagued me for years.  Well, that and that it is a great soft shoe number.  I wanted to be a part of things but EVERYTHING WAS TERRIFYING AND I WAS SO AWKWARD. All capital letters awkward.  In social situations words left me completely, and I floundered, sputtering and incoherent.  I remember in high school the boy I liked once asking a friend if I even talked.

My husband would undoubtedly find this question hilarious, based on the word tsunamis he endures when he gets home from work each night.  

Being invisible hurts.

Honestly, I think this is partly why the lack of closure at my old job rankles, that sense of being unseen, unworthy of engagement hurts.

I have been reading a fair amount about people in America who feel invisible, who exist unseen by those with more economic means, educational opportunities, social stability. My heart hurts for how so many Americans feel like cellophane, like something invisible and discardable. 

I have been guilty of not-seeing people when they have hurt me—of using that same disregard as a weapon. I am not proud of these times. Intentionally NOT seeing people is hurtful and there really is no excuse for it. I am sorry for those times.

On the flip side, being SEEN creates profound joy and connection.

My third-born and I trekked up to Maine last week to see my survivor kid on her 21^st birthday. When we entered the camp where she was volunteering, we were overwhelmed by the love, joy, and greetings of friends galore. Hugs, smiles, cheers—it was like we were the long lost travelers returning from dangerous journeys abroad. Like the Grinch, my heart grew three sizes in about the first 10 minutes.

SO MUCH SMILING!

Buoyed, strengthened, flooded with positive emotion and connection—being SEEN just for being THERE in all our goofy glory--not for doing anything or bringing anything or anything other than just BEING THERE-- had a powerful effect on my spirit. It is hard to explain, but the connection and solidarity of being seen made me feel like I could get through another year. I could do the hard things. I could keep going.

I felt heart-full in a way I rarely experience.

What if we could do this for each other all the time? What if we could practice seeing those who are often unseen? The poor, the immigrant, the sick, the elderly, the cashiers, the baristas, the sanitation workers or linemen working in our towns? What if through a little smile and friendly comment we could foster those connections and make people feel SEEN?

What hurts could be healed? What hard things could we all do if we knew we all truly SAW each other, not just the good parts, but the tough parts too? 

             Certainly the folks at Camp have seen me at my neurotic worst (yeah not listing these), at my most vulnerable (Exhibit S for Sorafenib, aka Crazy Crying Lady 2012), at my weirdest (Exhibit O, head banging ORFFAPALOOZA!!).  And yet they do not turn away. They see. They embrace. They celebrate.

I just read Dignity by Chris Arnade, which explores those “unseen” in America. While a bleak sort of book, Arnade does suggest that if we really listened to each other, REALLY saw/heard what those in different parts of American society had to say, maybe we could fix some of the hate swirling around.  I have to agree. Seeing is the first step to connecting, which can grow into solidarity.

I am not sure how to make this happen on a broad scale, especially in the current climate of name-calling, “alternate facts”, and different moral priorities. But I know that on a small scale, I can practice truly SEEING those around me without judgement, without fear, with friendly curiosity and cheerful camaraderie. No cellophane on my watch.  Maybe, just maybe, we can figure out how to move right along with those we have not seen before; and that, I think, will make this world a better place.

The Boy With the Cobalt Hair

So this blog is different. This summer has been a different kind of Movin’ Right Along,  and I have struggled to put into words all the things in my mind (which is so connected to my heart—herein lies my struggle). But I had to write something, so…here we go. Inspired by a recent trip to VA to see an old and dear friend and her mighty boy…I wish I could wrap them in all the love and support and make the horrors they are facing go away.  I can’t. I know this. But if even one word here can encourage more folks to support this family through prayer, good thoughts, donations, happy mail, whatever, that is a tiny light in a very deep darkness.

This kid is really, really special; we love you, mighty Levi.

Peace. --k




The Boy with the Cobalt Hair

--my favorite color!--

Smiles,

Snoogles his kitten,

“His name is Flash” he says,

As kitten leaps

And bounces and springs and pounces,

Climbs the curtains!

Topples a shelf!

All claws and cuteness

A Flash of motion!


The boy with the cobalt hair

Laughs

At kitten’s antics

At silly videos

At stepdad’s fun--

Quiet joy sprouts everywhere and anywhere

Defying pain.


The boy with the cobalt hair

Loves

With gentle, unwavering trust,

His momma, her hair in cobalt, too, to match her mighty boy.

Her strength his strength, her love his love—

Reflecting each other

Bright and pure.

A bond that at first sight

Shines as eternal.


The boy with the cobalt hair

Battles

In quiet strength, in stoic silence

The cancer beast within;

Monsters that terrify and baffle

Insidious and perplexing--

“Just don’t worry about it,” he says

His gentle drawl speaks out his courage

When momma asks how can she be more like him--

His transcendence – supernatural?


The boy with the cobalt hair

Eats pizza!

Plays at the arcade!

Wins tickets!

Picks his prize!-- a blow up hammer—to bop his stepdad or his dogs

With gentle humor.


The boy with the cobalt hair

LIVES.

Unbound by diagnoses, 
anchored in 
his momma's love,

Freed from fear by her tireless care.

(He is the apple fallen near his momma’s tree,

her love his lifeblood,

Though she protests,

his strength reflects her own).


The boy with the cobalt hair

Knows he is loved.

This confidence shines true,

Beyond the cobalt hair,

Beyond the creeping signs of illness,

Beyond the quiet hugs we mommas share, 
our tears shed out of sight.


The boy with the cobalt hair

Teaches

That gentle goodness and purity of soul

Are NOT extinct,

That love gives strength to walk whatever road.

Stay close to those who love you,

those you love,

And you will overcome the darkness.

Momma Melina, Mighty Levi, Flash the Kitten, G & Me 

(I am not really an Amazon, just playing one in this pic??)

 To learn more about how you can support mighty Levi and his family, please visit Operation Love for Levi or Levi’s Superfriends on Facebook.  Please pray for our dear friends as they travel this very difficult road.

Over the Wall and Back on Track

Well hello. 

So, about May…

Yeah. I kind of missed that month. 

At the end of April I hit a wall. Figuratively, not literally, thank goodness.  I did that one time in rage and I think I sprained a finger, so don’t hit a wall, people. Between working more, family stuff, friend stuff, life stuff, all the stuff, my words just got clogged. And as all good procrastinators know, the longer you put off something you meant to do, the harder it gets to do it, and the worse you feel about procrastinating, and then a vicious cycle of ugh takes over.

my wall

May tends to be a challenging month for me for a variety of reasons that I don’t feel like writing about again. Even sitting here typing about May, my hands keep freezing at the keyboard, my insides curl up with meh. I LOVE the outside during May, the flowers and birds and sunshine and rain and all the things.  My insides just won out this year when it came to writing.

Even with art, I hit a wall. Once I finished a gift for my parents’ 50^th wedding anniversary, I floundered about a bit. No project seemed right. No ideas really came. Even my attempts at sketching ideas felt meh.

Not everything fell apart. Everyone here still ate regular meals (with a not unreasonable number of foraging days), I found a better rug cleaner for my dog who anxiety or rage pees when we are not around, laundry is done and mostly put away. I did go to work regularly. I drove everyone where they needed to be all the times.  I have not missed a day of my home yoga practice since January 1 (will write about that another time). I threw a 50^th birthday party for my spouse and a graduation party for my miracle child. 

I bought nail polish.  That took weeks to get myself to do. The weird internal struggle is real, peoples. 

I couldn’t even post little inspirational quotes on the MRA page! You know, the one I created to actually make myself do the thing of trying to be encouraging and real and using the ugh of so much to maybe help folks bear their own ugh. I couldn’t even write a line on a page and post it. What the what??

Someday I will figure out what this kind of creative resistance is about, or why I can do one thing energetically and then crash or wander. 

But I have also realized that this is kind of just me. Facebook memories serve to remind me that I am always juggling things, always trying to make time, always trying to find energy, always affected by the weather…in the last 10 years, that has not changed a whole lot, and if I try hard to think back to before social media reminded me of things, I have to admit I probably operated the same way. 

Accepting that is key to addressing my own patterns and self-limiting beliefs (ie I never get anything done, I am a slug, etc). 

Now that I know I am done subbing for the year, it is time to regroup. Last week I floundered all week. Today it is time to get Movin’ Right Along again.  

The wall is always there, but I can keep climbing.  I still feel a deep responsibility to do SOMETHING during the time of medical reprieve we have been in for a couple of years now. I know to the depths of my core that this zen time can change in a heartbeat. Literally.  I have to use the time. So many of our friends are in such tough places right now. I have to use the time.

And at the same time—I have to figure out how to navigate a new season for my children (always a new season, it’s like getting shoes for a 13 year old boy, you finally find the right pair on sale and in the right size and two days later the kid has outgrown them. Urp. Yay, growth, but urp to the constant re-mapping of the way of things!). I have to figure out what I am supposed to be doing. Maybe it’s just to stay the course, to do the little things, to just do the next right thing? 

Whatever the case may be, I am done being paralyzed by the questions. I can do the next right thing. 

Today I get back on track. I will not edit this to death, or let it sit (like the little pencil sketch here) on my craft table for a month. Even my picture of a wall hit a wall. Doh. 

Movin’ right along…

Today is the day.

Also, now I am singing the Broadway Shrek. TODAY IS THE DAAAAAY…..

Hm.

Spring!

SPRING!!!!!

That is the short version of why I have had no words recently. 

As I dance around my kitchen each morning, in a style that can only be described as Spastic Muppet, my husband sighs. “WHAT ARE YOU DOING???” 

He is not prone to fits of early morning exuberance.

“I AM DANCING BECAUSE SPRING!!!” 

Apparently daylight is my favorite. The slowly increasing warmth of days is my favorite. The magic of every morning when I walk the dog, seeing new buds, new tiny bits of green, new blooms on old ShopRite bulbs I planted after they wilted post-Easters long ago…all of these are my favorite.

Blue sky when I was doing 

yoga on my deck a few days ago. 

ALSO MY FAVORITE.

The trees I can see outside my home office window are still brown and twiggy, but the edge of my weeping willow just peeks past the window frame, and just this morning I think the number of buds on that tree have doubled, lime green dots of happiness.

By contrast, I see how extremely I am affected by the change of seasons…the challenges of late fall/early winter’s darkness are so quickly forgotten when I get more hours of daylight.  Not forgotten—but gosh I appreciate EVERY SECOND of spring.

Woo!

Even my house plants look so happy. 

Well, the succulent looks all spindly and straining to the window. I have to Google how to re-pot it. Even a little poinsettia I got for Christmas is still blooming!  Next to my spindly succulent is a little plant in a box, I think it’s some kind of kalanchoe? 

Last spring, as I prepared to leave the only job I ever really had, my principal, a mighty, compassionate, wise woman, gave me this little flower as a parting gift, with her thanks.  

This flower means a lot to me. No other administrative person, most of whom I have known for 20-30 years, most of whom have had many children in my classes—not one ever acknowledged that I left. Not one acknowledged I ever had even been there. Complete radio silence. 

This is ok. It is, in many ways, a confirmation of things long known. 

By contrast, that little flower means a LOT to me.

It sits on my kitchen windowsill, slightly tilted over the months of winter to drink in every speck of the western exposure’s light. The leaves are dark green and round, the stems strong…

And I realized the other day, as I came home from substitute teaching, tired but happy, that my plant has been growing like CRAZY. It is starting to get new blooms even, tiny white flowers that lean toward the sun.  It looks…happy, too. 

Look at all the Happiness! Tiny flowers on right...

Whoa. That’s kind of a metaphor, no? 

Growing, blooming, gaining strength—that parting gift from my principal is so much more than a flower, so much more than a sign of her gratitude for the time we got to work together. In a lot of ways, that little plant reflects so much of the last few months since I took my leap of faith—literally faith, I prayed so much to discern the right path. I wasn’t sure I could keep that plant alive all winter, but there are new leaves now, new blooms, new growth.  In the first few months after leaving my job, I wasn’t sure I could make it work. I knew I’d survive, let’s not be melodramatic (she says for the first time ever). But I guess I did not realize I could grow, too. I wanted to think I could, but my deep-seated defensive pessimism lurks always beneath the surface of my aspirational optimism.

But—I am so much happier now. Even in the dark of winter—so much happier. And so grateful for everyone who supported me in my leap (especially my husband, my children, my extended family).

Spring this year reminds me that there is ALWAYS possibility for growth. There is ALWAYS at least a window to lean towards when a door needs to be closed. 

A year ago at this time, Movin’ Right Along was a mantra I repeated to give myself oomph to do the hard thing I needed to do.  THIS spring, I am so grateful to be Movin’ Right Along in a different way, more of a hey, not sure where I’m exactly headed yet, but the uncertainty can also be exhilarating too, getting there IS half the fun, and hey, FORSYTHIA ARE BLOOMING ALL OF A SUDDEN!  

A little bit of space can provide a lot of perspective.

I can’t say things are perfect. Subbing has its own challenges—but they are the right challenges for right now, and that brings me a measure of peace, understanding that. I may not be able to create zen (still a bit irked about THAT reality), but acceptance and understanding of life are kind of what zen is all about.

If you feel stuck—if you are in the middle of a super dark place (and reading this and thinking SPRING YOUR FAT FANNY, KRISTIN!—I respect and resemble that) – hold on.  Just holding on is huge.  I have been there—in those moments where my life feels like an endless cycle of hospital time, anxiety, mom responsibilities, anxiety, work, anxiety, teenager troubles, anxiety, laundry, anxiety, oncology mom responsibilities, (anxiety)…the frustration of those seasons is so real.  So many years of winter… but Spring will come. I hold on to that hope for you. Spring can’t make the bad stuff go away, but its light and warmth can give us the strength to keep going.

I hope for everyone a moment of seeing where YOU HAVE COME A LONG WAY! Learning, growing, doing the things—every day! You are doing it!  Do you know how hard I am resisting the urge to quote a Barney the Dinosaur song??? GAH…

Instead—be proud of your own Spring, friends. YOUR growing. You are awesome. :)

Moments to Grow

If life were made of moments—

Even now and then a bad one—

If life were made of moments—

Then you’d never know you had one.

                                Stephen Sondheim, Into the Woods

              As much as that song gets stuck in my head on a regular basis—life IS made of moments woven together. Trying to be IN the moment, trying to remember all the moments—this has long been my work. I fear forgetting.

                This weekend held moments that made me stop, and think, and reflect, and weirdly NOT get emotionally overwhelmed by the racing torrent of time and loss that for so long has hijacked my response to most things.

                On Saturday morning some of my former students came to help us with yard work. They are fundraising for a trip, and I know they are great kids, so we got ourselves a little crew to help with the branchpocalypse our willow trees left in our yard after one too many windy winter storms.  I haven’t seen many of my students since I left my old job, so having a few come to my house was lovely.

Spring willow (last year--no leaves yet this year!)--one of 4 in the yard.

We had pros come take down the storm-damaged branches,

don't be alarmed. 

                I looked out my kitchen window as the boys arrived—did they have a new kid in the class? I did not recognize one of the young men bundled up against the cold. I went outside to say hello and realized the unrecognizable young man WAS one of my former students, who apparently grew 6 inches since last June.  Like, now he is taller than I am—which was NOT the case before.  And yes, I went out and said “OH MY GOSH DID YOU GROW LIKE 6 INCHES SINCE LAST YEAR???”

                He did, as did the classmate next to him, which I only realized when standing next to both of them.

                AGOG!

                Ok, so I know this happens, I have a son who grew through clothes before I even took the tags off, and even my formerly tiny child has finally grown to be a short teen—but in context of all, seeing this young man so tall and grown up gave me a moment of joy.

                I know, I know, me leaving would not stunt students’ physical growth—I just felt so happy to see these young people doing so well, growing, working together, chatting about silly things. It was a good moment that reminded me of a lot of good moments in my old job with these great kids.

                Once the yard was cleared, my husband started a job we have long discussed—taking down the swingset. We had put off this moment quite a while since my youngest was loath to part with the swingset, but the steps and rails were rotting despite our repair efforts, and with little cousins who come to play, I did not want anyone to get injured out there. Also, my youngest will be 17 in a few months.

The time had come.

I feared my response to this. I have often written about how hard it is for me to part with pretty much any part of our family history, especially in light of my daughter’s catastrophic illness. The Furby she received after very high stakes brain surgery in 2006 still stands as a creepy sentinel in the top of a closet. I can’t get rid of it. So I figured getting rid of the swingset would be excruciating.

Furby is Listening...always listening...

I remember agonizing over which one we could get on our very limited budget, spending hours looking online in the early internet days.  I remember getting it set up while my firstborn was away at camp, surprising him and his little sister when he got home. I remember the baby swing we had on there for my now almost 17 year old, and all the fun my kids have had out there over the years. So much remembering. So many good moments.

the last swing

But somehow, in this moment, I could remember all those moments and NOT get trapped there. Grace? Progress? Healing? No clue why. Just – it was ok. And I had to stop and say, whoa. This IS OK.

I didn’t see THAT coming. I fully expected angst galore!

Taking down the swingset, ending this era of my parenting is ok.

Letting go of a reminder of when my kids were young is ok—because we made it through. For so long I have been terrified to let go of ANYTHING, lest someday that be all we have left.

But our past can be better honored by taking DOWN the rotting cedar, and putting up something new. We will create a new lovely space out there for new rememberings, new moments of joy.

I am grateful for these moments, for zen flowing where normally anxiety and uncertainty rule.

Growth is good. Outgrowing a job, a swingset, heck, even a pair of jeans—ok, maybe less that one—celebrate those moments of growth. Know that you have them. And keep movin’ right along.

Um, officially outgrew the swing. 

Claiming Hope

Hope is the thing with feathers

That perches in the soul

And sings the tune without the words

And never stops at all.

                        Emily Dickinson

            Ten days ago, a friend’s daughter was diagnosed with a brain tumor.

We are not super close, this friend and I, but I have known her since childhood. Growing up, our families spent a lot of time together, my dad worked with her dad, we were in the same prayer group, etc.  In grown up life, my husband’s sister married her brother; two of her children were classmates with my children, and I taught 3 of her kids over the years.

So I know her well enough that the gut punch of any new diagnosis was magnified a hundred fold.

            Our smite was supposed to protect everyone else who ever knew us.

            Seriously. WE ALREADY GOT DEALT THE RANDOM BRAIN TUMOR CARD, HOW MANY MORE ARE IN THAT STINKING DECK?

            My “no F-bombs during Lent” went out the window on literally the second day. Dang.

            Watching the pain ripple through family and friends, seeing from another vantage point what it must have been like for those who love us when G got sick…and knowing pretty solidly how little S’s parents were feeling in each of those first nights in the PICU with their third grader, the long hours waiting for answers in the surgical waiting room, the dearth of information, worrying about your kids at home…my soul just shook. I don’t know how else to describe it.

            My husband doesn’t have the searing memories of those first days like I do.

            He is lucky.

            I just can’t believe there is no herd immunity for smite. Seriously. I have 2 kids with brain tumors. How can this happen to anyone else we know from pre-brain tumor world?

            I know my friend is not mercurial like I am. She is zen and steady and wrangles 9 kids with a smile. I am hiding under my bed most days with 3 kids (2 of whom are technically adults!).  I have talked to her via text a little to offer support and little words of whatever. I don’t want to be Bargey McBargepants—and not everything I know will be helpful right now.

            But I need her to know Hope.

            Hope is real.

            When things are so, so dark, and hope seems to be lost or at the very least obscured…hope is still real.

            Hope sings the tune without the words, and never stops at all.

            Hope has to be grabbed in the dark, like a cosmic Marco Polo…holler for it, and reach out. You may end up splashing around for a while, but eventually, you might just catch it.

            I have written before about my challenges in holding on to hope over the years, my pins, bracelets, pictures, words, things I hold on to—literally tangible items—to remind me of hope.  I desperately yearned for hope, and some days had it, some days couldn’t grasp it…but hope is real.

            I have to find a way to share this with my friend.

            Two days after this devastating news, my G and I trekked to Massachusetts to surprise two of our dearest brain tumor friends who are celebrating their 21^st birthdays this year. I felt a little nervous about driving there alone, but the conviction that we Had To Be There was unshakeable.

            This was a celebration of 21, yes. But really—we were celebrating HOPE.

            These two mighty young women have been dealing with brain tumors and all their concurrent horrors for most of their lives. Surgeries, chemo, radiation, complications, lingering challenges, everything that onco-yikes can be, these young women have faced with strength and dignity. They are beaten but unbowed.

            As we shared pizza and ice cream and some ridiculously tasty cookies from NYC, all I could feel was a deep love and joy for these young women. They are both still in the thick of things. Both face challenges every minute. AND YET they ARE HOPE. They are hope over time.  

            Funny, spunky, and just keep going, slowly sometimes, but they keep on going.

            Even in the worst of brain tumor ugh—to paraphrase Maya Angelou –

            Still, they rise.

            And with them, their families, those who love them, their friends in and out of the brain tumor community. Hugging their mommas, these mighty, beaten but unbowed women who stood with me in our toughest hours, I just felt that connection, the connection of shared hope and pain and love and understanding.  Just being there reminded me that even as my soul relived that terrible aloneness of our own early days in brain tumor world, NOW we know we are connected to a much larger community—just not being alone is a great, great hope.

            Seeing these mommas renewed my hope.

            Hope does not guarantee a happy ending. Hope just helps us navigate whatever the story is in the moment we are in it. Hope helps us connect to something bigger than the bad moment that threatens to swallow us.

            This is the hope I need to share with my friend.  Hope is real. Hope is slippery, but it is real, and when things are darkest…hope can help us get through the night.

Please pray for little Shannon, as her family works to plan their next step through great uncertainty….