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.

Zen and the Weight of Ugh -- A Digression

So: Zen is a path, a moving moment in a spectrum of experience. Zen can’t be forced, it has no endpoint. I can’t control my zen, but I can practice healthy striving towards being my best self. I can use the tools I have learned to keep movin’ right along…

As long as it is a good day.

Let’s just call this The Great Reality Check. Again.

Most folks reading here likely know that in 2004 my then 6 year old daughter was diagnosed with a large brain tumor, secondary to a genetic condition called Neurofibromatosis Type 1.  While I told her story (up to a few years ago) in this blog,  this space was originally meant to be a space for medical free writing. 

Yeah, that has only sort of worked. Context is everything, and brain tumors completely changed the trajectory of our family's life.

For my kid, after one failed chemo a second tumor area appeared. Throw in a third chemo fail a year later and add a third tumor in an even more precarious location.  

G, the week after diagnosis 

and her first surgery

This kind of diagnosis and its concurrent ongoing horrors leave a mark, to say the least. A mark on me, my spouse, my other children, my extended family, my friends…and of course on my child who remained a sparkly smiley diva queen goddess through the awfulness of her suffering. 

Dressed for Chemo Protocol #5, 2012

She never lost her faith. She would wail and express loudly her displeasure (OH SO LOUDLY), but she stayed so positive. For her, we all kept going.

Everything fell apart over two years…and then barely held stable for 5 (many scares)…then fell apart again over another two years…then two other unrelated medical issues in subsequent years…we are talking a decade of really difficult stuff.  Her older brother and younger sister endured a complete upending of their lives, too, over and over. And overall, despite her own fears, my mighty G stayed positive and hopeful.

In the middle of this we found out her younger sibling had medical issues as well—challenges she prefers to tell in her own way, her own time. That is all I will say about that… well, and that she too remains positive and carpe every day-ish about her life. 

I wish I could say the same for everyone in their orbit, starting with me. 

In my old job some colleagues found me “scary” and told me so.  Hearing this hurt. But they were right.  Faced with a life and death battle for my kid, the "don't rock the boat", "avoid conflict at all costs" pre-Ugh version of me ceased to exist.  Life is too short to put up with garbage--especially when my kid's peace and well being were compromised. 

Massive anxiety caused by the general chaos at my old job also made me “scary”.  I desperately needed order, needed SOMETHING to work smoothly, because the weight of G’s Ugh, the chaos it wreaked and the late effects it caused were (and are) omnipresent, even when we were not in the middle of actual medical crisis. 

Stable brain tumors are still brain tumors.  In my kid's head. 

!@^&!(@%!#%

I can’t begin to talk about trying to be more zen without acknowledging the Ugh—because it is always there. Always. No snow days for ugh. Always there.

The weight of ugh is real. And some days, the weight of the ugh that hit our family in 2004 just flattens me. Anxiety and mild depression were my companions BEFORE my child got sick – pediatric oncology didn’t exactly perk things up for my brain. 

So—this is how I see the Weight of Ugh in life. Maybe this is helpful. Maybe not.  I think everyone has something—or at some point you will. I hope not…but life tends to smite. And learning to live in that smite and still keep moving forward has been the work of the last 14+ years here. 

If nothing else, know you are not alone when you are carrying Ugh. The isolation Ugh leaves in its wake is one of its most awful legacies. You are not alone.

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

In the beginning, the weight of ugh is everywhere and everything. It crushes the soul. There is only darkness and shock and despair.  In our particular journey, we’ve had a few repeats of this stage of the weight of ugh. 2004... 2005...2006...2008...2011...2012...2016.

This is the stage (at least the first time) where people rally support and love. This is the stage where you really need folks to run interference for you on information sharing, etc. This is the stage where you feel like darkness is swallowing you. Everything is darkness, darkness is everything. "I wake and feel the fell of dark, not day..."

This is the stage where you can taste terror, where you can feel it. Hearing a devastating diagnosis...having a chemo fail...having new tumors show up...having all the tumors grow dramatically instead of shrink while on a trial--in these moments terror's metallic taste fills your throat, and a vise tightens around your chest, your blood pumps hard in your ears. 

Even typing this, I have to take a deep breath.  This is not today, at least not the today when I am typing.

In the second stage of ugh, you start moving as best you can—dragging the horrible weight, barely able to stand under it. In our case this stage was the start chemo/do research/disaster response portion of things…and honestly, stages one and two wavered back and forth a bit. I would just lift the darkness a speck to do mom stuff and then school would call to tell me my kid could no longer see any letters beyond the big E on the eye chart. I could rally my 6 year old for clinic and then find out her chemo failed, tumors grew.  Stages One and Two are a nauseating seesaw back and forth. 

By stage 3, you learn how to balance the Ugh a little and drag it along, but gosh it is heavy, and you strain to get through the days. Time has passed now. Some of the support crew have moved on to other needs and crises, and hopefully you find some other support within the Community of Ugh. You realize at school events or other social things that you are living everyone's worst nightmare, and that gets super awkward, super fast. But you keep going as best you can. You have responsibilities. What choice do you have? Laundry continues to pile up. Kids have to get to baseball practice or ballet. People at your house still want to eat dinner. You keep moving.
                                     
Stage 4—the Ugh is just a part of your day. You can drag it along with you, do what you need to do, but don't forget it. Ugh has changed you. Not necessarily for bad or good, just…changed. We existed between stages 3 and 4 (back and forth) for a long time. This is when I was most scary. Ok, I still am scary if you mess with my kid. She doesn’t have any scary in her, so that is my role. I remain utterly unapologetic about that. Still—in this stage of Ugh, other folks may have moved on or forgotten that you are still dragging this thing behind you. They resent that you aren't the same, or they just move on. You have a new normal. Meh. 

But you know that your people in the Community of Ugh are YOUR PEOPLE. And you are grateful for their strength when you have none, and you can share your strength when THEY are being smote by new Ugh. 

You cannot ever GET OVER the UGH. Like I said a few posts ago, you have to just learn to BE with it. Ugh has become a companion for the road whether you like it (um, no) or not.

THIS IS SO CRITICAL. The Ugh exists as context for EVERYTHING. Every. Single. Thing. All things filter through the lens of whatever catastrophe struck. Just like I can only see my computer because of my Coke-bottle lenses on my glasses...I can only see my days now through the lens of my lived experiences through Ugh. 

And thus we reach Stage 5 of Ugh, when Ugh lingers in the background. You know it’s there. Its shadow is long. But you can live. In our case—we interact with people now who do NOT know our story. Since more than half of my mom life has been consumed by this Ugh, that is pretty amazing. But now that it is in the background, we can leave it there. Cautiously. Alertly. It takes very little--a headache, a wave of dizziness--for us to be on high alert again.

It isn’t gone. It is still always there. THIS is why  zen work is so hard. This is why metanoia, that change of mindset, can be impossible to grasp at some days. Ugh is not an excuse, but  the Ugh is the context for everything

I can't help it, I'm a teacher, I have to repeat the important parts--and in life, even without Ugh, context is everything.

If you are carrying/dragging/keeping a side-eye on Ugh of your own—know you are not alone. 

Everyone has some kind of thing they are carrying—maybe not as big as catastrophic illness, maybe bigger—maybe the loss of someone you loved. People carry chronic illness, mental illness, stress, financial woes, strife in the family or workplace. We are all carrying ugh.

Be gentle with yourself. 

Be gentle with each other. 

Let’s keep movin’ right along together. 

As this is posted, we are en route to the hospital for MRI day, to see if my daughter’s tumors remain stable. Last time we had MRI day I stopped writing altogether for months. This time, as per my sister's advice, I wrote this blog ahead of time, as my mind goes towards our impending hospital trip. Even today, two weeks before our actual trip,  I can only write about ugh. 

And that’s ok. That is real. That is the context of my life long road trip—and I have to just keep practicing being at peace with it so I can keep movin’ right along.

How do you manage through the difficult stages of Ugh in your own life? Would you add any other stages to my 5 part staging of Ugh?

Stay strong, friends. You are not alone.

Zen in the Wait

This summer I climbed a rock wall for the first time.

I did the easy side, and my third born zipped up the harder side next to me—but after so many years of being too afraid to try it, I knew THIS year I had to get it done.

So I did. Awkward helmet on my pumpkin-sized head, straps uncomfortably cinched around my ample backside, I did.

I zipped up my course…not because I have skill, I just have long arms and legs and I find that when I am nervous I do much better if I can go as fast as possible so that I don’t have time to think, I am just doing and moving forward.

There were a few moments where I had to grip onto teeny tiny colorful globs that really seemed incapable of holding all of me as I looked for the next grip. I focused with all my might on Just Getting To the Top. I knew if I stopped to think, I might be stuck like Charlie on the MTA.

Will she ever climb up? Will she ever climb down? Oh her fate is still unlearned!

She may cling forever to the Camp Sunshine Rock Wall!

She’s the mom who never climbed down!

Yergh.

And then, when I got to the top, I had to wait for my third born, she who is 6 inches shorter than I am and was climbing a harder route. After the brief moment of Extreme Woohoo! I did it!…I started to think a bit about physics and altitude and the rate at which one could fall to the earth if the person belaying me let go, or what the probability was of my grown up self launching that young woman into the air as she tried to help me DOWN the wall.

This moment was less fun.

This is the moment in which I find myself now, in so many areas of life.

No, not typing at the top of a rock wall—although that would be some awesome multi-tasking. I am in that moment of waiting. And in waiting there is time to think. And for me, with thinking comes doubt. 

I have a feeling I am not alone in this, even though those moments often feel awfully lonely!

Which way is up or down? What direction am I supposed to be climbing in? How can I help my friends who I love so much and who live so far away and are in the thick of things right now? How can I keep my skills sharp as I wait to see if I will find my way back into a classroom? Is that where I should even be headed? Which way is the best way to help people in my own community, to support my children even as I try to get them to be more independent and responsible? How can I start contributing financially to my family again? WHICH WAY IS UP?

Thankfully, I have zero doubt that starting the climb into this new moment (i.e. leaving my old job) was ten bazillion percent the right thing to do. Zero doubt.  I miss my students, but I have Gwen Stefani levels of No Doubt. There is great freedom in THAT choice, huzzahlelujah.

My doubt and overthinking come in the moment of waiting. What now? 

At the hospital, folks who worked there would joke about how good our family is at waiting—we love our neuro-oncologist, she spends so much time with her patients that she is notoriously late. Since we have been the “needs more time to sort through catastrophe” family too many times, we NEVER fuss about waiting. Ever. Even when the hospital staff are checking out for the day and we are the only people left in the waiting room, we wait without fussing. During certain waits (like scans and such) after a certain time I start to pace, which makes my spouse insane, especially when I throw in moves from the Ministry of Silly Walks or start only stepping on the colorful tiles, but otherwise we are really good at waiting there.

In regular life? In figuring out where/how to focus my efforts? I am less good at waiting. I am super skilled at self-doubt and overthinking.

Doing is so much easier than being—quiet moments are hard. 

Circling wagons to help a friend is easier than sitting in the wagons and waiting for first light, just sharing the dark space with friends in quiet.

Taking a course to keep my skills sharp is easier than making myself work through texts on my own with no measurable goal in sight (other than to finish the text).

Demo is always easier than the slow task of planning and rebuilding.

I just am not sure where the next colorful glob is to hold on to—just that it’s probably uphill!  I have to hang on, and keep moving right along in the small structures that shape my day (around chauffeuring my girls), one colorful glob to the next, and trust that the right path will become clear as long as I stay focused on the process of moving forward—and not obsess about an end point I can’t see. 

In order to get down from that rock wall--I had to let go. Literally. Let go of the wall and trust that I would not splat. After some awkward flailing, I went all Blues Brothers Swat Team on that wall (hut! hut! hut!) -- but letting go of  that which is solid and known is scary--but required to not stay stuck.

 Rebuilding done right takes letting go of my need for control over every outcome, it takes time—and I know there is zen in the process, zen in the wait. I can't just race through without thinking. And that's ok. 

So for anyone who can relate to this sort of questioning in the hanging on moments--you aren't alone. For anyone stuck in the present moment, plagued with doubt or self-recrimination about past choices or personal weaknesses or generalized ugh with all the awful things going on these days—hang on. We will figure it out, whatever IT is. We can. We just have to hold on, look for the next little glob (moment) to cling to and keep moving forward. We will figure out where we are going.

You know what my beloved Muppets say – no, not “Bear Left, Bear Left!” – “Right, Frog!”, although that is true, too --
“Getting there is half the fun come share it with me!”

And when getting there is NOT super fun—I am grateful to share the trek with all of you—especially when the path is dark and hard and we have to hold each other up. Without that young woman belaying me, I would not have made it up that wall--or down! Now, I am so grateful for friends and family belaying me in my What the Heck Now? climb. Don’t forget your helmets…and thanks for not letting go! Seriously. I have a strong aversion to Splat. Thank you. 

Also, I should go look up what those colorful rock wall globs are called, right? Stay tuned.

Circle the Wagons

So I am going to lay some truth on you. 

Some days are way not zen.

Some days are the anti-zen.

Some days are all “then in despair I hung my head, ‘there is no peace on earth’, I said”.

Even on days where I use every single tool in my Toolbox o’ Zen, there are catastrophic moments that leave me gasping for air and wondering which end is up.

These are the days where I am reminded of the power of community, probably the greatest lesson I have learned over the last 14 years, just after “Dang, My Kid is Mightier than All Mightiness” and “If a Doctor Comes to Find You In a Playroom, You Are In Big Trouble”.  In the darkest moments of G’s illness, the prayers of others, the food brought by people, the information shared by those a few steps further along in the trenches—these things carried me, carried my family.

This week has been one of those weeks for a dear, dear friend, one of those weeks of gut-punching devastation. 

The one peril of the power of community is the reality that we share each other’s heartache—but in this connection comes wholehearted living, and I would not trade it for all the zen in the world. It is in loving others and caring and working to help each other that devastating moments become survivable, if not exactly bearable. Even with the grief and pain of this connection—the love is so much more powerful.

As my dear friend received a devastating new diagnosis for her son, a young man diagnosed with brain cancer two days after my G, our community heard the call to rally—a community built of cancer mommas and good friends and chosen family. We are circling the wagons around Melina. Granted, that reference is derived from Wild Bill’s travelling Wild West shows (and then Hollywood), not so much history—but the idea of circling around those we love, those who are hurting, is a powerful one. We can’t fix things. We can’t make it better. We can only do those peripheral things like pray and feed and share info and maybe send ill-advised stuffed animals (I am trying not to, but…Must. Send. Something. Soft and Nice!). But we can do it in a circle of love and support and solidarity.

This is not what I planned to blog about today—especially since yesterday was supposed to be blog day—but wagons don’t circle themselves. I guess in Beauty and the Beast they might, but that would be creepy. But this is what needs to be said today.

Please join our circle of support. Please, in this month of childhood cancer awareness, help us love, support, and protect a mama who has been relentless in her love for her mighty boy. After 14 years, to have this moment—she needs our love more than ever.

We love you, Melina, and Kayleigh, and super Levi. Know that there is a circle surrounding you. 

Please join us on Operation Love for Levi on facebook; please pray/meditate/dance by the light of the moon for this family; if you would like to financially help the family directly (ie without the fees GoFundMe takes), use the Venmo app to send money straight to loveforlevi (with Melina McAlwee as the contact). 

And really. Let’s circle the wagons and find some cures for childhood cancer already. 

#loveforlevi

Zen and the Little Things, Zen and the Heavy Things

“Thick, heavy snow is blanketing my yard as I type; a March “Kaboom” as our favorite local weather guy would say.”

I wrote this last week.

I have realized I cannot write anything if my family is around. And that 4-8” of predicted snow turned into 16” of high volume, tree-shattering, power-killing snowmaggedon. We spent a fair amount of time that day trying to save trees in our yard (mostly successful), and then spent 5 days without power.

Thank God for our post-Sandy generator. It can’t power EVERYTHING in the house, but water/heat/and most of the lights make all the difference.  We are so grateful to all the crews trying to get Jersey back up and running.

At the same time, a lot of our good friends in the brain tumor community have been in really challenging medical situations. The peril of having so many close friends in a community of smite, especially a community of smite characterized by the marathon-like duration of the smite, means that most of the time a lot of people we know are getting smote.

This past week or two has been Smitefest Extreme.

The heaviness of the snow and no power was dwarfed by the heaviness of our friends’ struggles. We have been in similar spots. I don’t know why we aren’t now, and I feel grateful and guilty and so deeply concerned for our friends who are mid-struggle right now.  One of my children scans in 2 weeks. That is heavy on my mind, too.

So last week’s blog was one line that never got published.

I have thought a lot this past week about the heavy things. 

I can’t lift them, or throw snow shovels at them (tried that with a horizontal cedar at the height of the storm, to try and get some of the high snow off, that actually worked), or make the heavy things change.

In the respite we’ve had, I have realized how much working to notice the little things helps me. It doesn’t make the heavy things go away…but noticing the little things lightens my perspective.

I tend to be a hyper-noticer anyway (survival skill for a teacher), normally noticing causes me anxiety or frustration, I notice ALL THE THINGS.  In a certain karmic balance, my husband notices NONE of the things, so…yes.  His response to my “hey, we scan soon!” reference—“Oh. Well, we can’t worry about that now.” AND THEN HE ACTUALLY DOES NOT WORRY!!! If he could sell THAT skill, we would be bazillionaires. Well, except that I would buy all of that, thus creating a weird market vortex between supplier and demander…

ANYWAY, In the last several months I have really worked to notice not just who is chewing gum in class or how many crumbs are on my floor, but I am trying to acknowledge and appreciate the world around me, to be in the present moment and to let those little noticings of nature and life and people soothe my troubled mind. Does that even make sense?

The peculiar pale blue cast of the snow crevices on our street (never seen that before!), the frost on the edge of each fallen leaf, the shape of my dog’s pawprints in the snow, the sound of the robins returning even though more fresh snow fell today…

These little noticings remind me that the universe is bigger than the heavy things. Heavy things are heavy…but life is not JUST defined by those things.

Noticing the little things enables me to be grateful for the little things. I can’t get a friend’s chemo approved or help a child in a dire spot, or ease the strain of medical testing for a child we love—but taking time to appreciate the smell of snowfall or the vibrant colors of my felt-tip pens or the soft warmth of the heating pad my sister made—in noticing these things I find strength to unbury myself from the heavy things.

THEN I can better support our friends. I need to be available, not buried.

This is a work. I have a long way to go, and if we get buried in smite again I am not sure if I will be able to maintain this practice.  But I have to keep practicing, strengthening the “notice the little things” muscle. Our respite demands no less.

What little things do you notice that help soothe your soul?

Find Your People

So, basic math being what it is, even I could see I did not post twice last week.

I beat myself up over this for a bit, and then had to let it go. My husband was away on a business trip last week which meant I took on his half of the chauffeur duties here—no big deal, just flummoxed my schedule…and then a last minute work schedule change (which always throws me completely out of whack) and the loss of a dear friend in the brain tumor community…by Thursday night I knew that second entry for the week was not going to happen, even if all the preliminary work was done.

That’s ok. But I will get it done this week.

And really, the loss of my friend Susan inspired today’s post.

Find your People.

Sometimes, it is impossible to be positive, at least for me. Sometimes things rot. And while I can choose to work through things and stretch to be positive, sometimes you need to have your people.

Your people are the people who can hear you in your bad moments.

Your people know your journey—whether through shared experience, or blood relation, or years of friendship—they are not scared off by the hills and valleys.  They stand below the cliff with a pillow saying “ok, so maybe hold on, but if you can’t, I can probably break your fall with this pillow!”—and you appreciate that, even if you know that the laws of physics are not on your side. It’s your people. It really is the thought that counts.

Your people laugh with you, cry with you, give you truth, and stand by you when you can’t stand on your own.  

Your people have your back.

Your people pray when you just can’t even talk to God, or you have nothing at all nice to say to Him.

Your people think of you, and you think of them in random moments of the day.

Your people may or may not be folks you get to actually hang out with. In this age of social media, some of my people are folks I have never actually met—but that doesn’t matter.

Your people find the humor with you in really, REALLY unfunny things.  Oncology humor has an extremely niche audience...your people are cool with that. 

Finding your People, whether it is through online support, or your kid’s class, or your own old friends, is so critical.

My friend Susan was one of my people.

In 2004, after my daughter failed her first chemotherapy and we realized she was simultaneously losing her vision at an alarming rate, I could hardly think. For the first time I truly understood what “going through the motions” meant. We lived 2 hours from the hospital, we didn’t know ANYONE who had the same thing G had, we were utterly alone—supported by our family (so, so grateful to our family—they are our people, too, always), but in onco world we were an island.

In December of 2004 I found a Yahoo group for Pediatric Brain Tumor parents.  That discussion board became a lifeline for me.  Here for the first time were people who spoke my language—who knew about vincristine neuropathy or the grossness of Bactrim. Here were people who understood why I wasn’t all WOOHOO when we finally got a stable scan. I wanted the tumors to be smaller…stable still meant Tumors Galore. I finally found a place where my story and experiences resonated with people, and where I could contribute something other than being the Elephant of Scary Stuff in Whatever Room I Entered.

Side note, if you have something really bad happen to your kid, you are painfully aware in groups of just how much you are every parents’ nightmare, people apologize for being upset that their kid has the flu or a broken finger…which is silly, obviously as a parent you SHOULD care about those things, smite isn’t a contest, it’s ok, I am sorry your kid has the flu, too, cleaning up throw up is no joke.

But I digress, as usual.

Susan and the other parents in that group are my people. 

I found my people literally through an internet search. Yay, Google! 

Over the years, I’ve found more people, and those people still help me get through tough days. My siblings, my parents (and in-laws), my online support friends, my old friends from high school—in different moments, these are all my people.

I have a lot of trouble being BY people sometimes. Finally realized there’s a name for that (social anxiety is a thing! Egads!)—but I am SO GRATEFUL for my people, who get that about me.

Knowing I am not alone--even when I am actually physically alone-- helps on bad days.

None of us are truly alone, even when everything screams YOU ARE ALONE. Everything is a stupid liar. Stupid is not the word I wanted to use, but...keeping it family friendly, today at least. 

My friend Susan was one of my people. She was utterly authentic, always. She was fabulous and loving and faith filled and funny and smart and knew the pediatric brain tumor journey so well.  Susan was one of those first moms I knew back in the day…she was “my people” for so many brain tumor parents.

The world will miss her…but her people will not ever, ever forget her.

Peace out.

Find your people.

More than we can Handle

You know you’ve heard it: “God doesn’t give us more than we can handle”.

My general response to this can be taken from the following list:

Poppycock!

BS!

Say what, Willis?

You shouldn’t smoke crack before talking, it makes you stupid.

Whatever!

The unspoken Look of Doom

Don’t step in that crap, it will stink!

Frim-frammery!

“if only in my dreams” (yes, sung).

Thankfully, because there is at least a general unease amongst well meaning folks about my until now unpublished list, really nobody says that kind of thing to me anymore.

I was thinking about this idea today while running – in between thoughts of “I really hope I don’t get run over by a landscaping truck”-- this idea that God won’t give us more than we can handle. Honestly, I think the exact opposite is true. I think God ALWAYS gives us more than we can handle. If we could handle everything perfectly, we’d be God. Or Martha Stewart. Or just bored to tears.

Don’t get me wrong, in certain areas of life bored is GOOD. I like our oncology staff friends to be dozing with tedium when they see us. I like being able to manage that stuff…

But I digress. I think God piles life on for a couple of reasons.

One, I think He wants us to help each other handle the un-handle-able. I know I have dropped the ball on this too many times in my life, but I am trying to get better about reaching out to people when they are like Wile E. Coyote, flattened beneath the anvil that fell at an unplanned angle. I think God means for us to do this. I know it is a great strength to our family just to know that other people are thinking of us. Just to know that we have different circles of friends that overlap in their concern for the anvil in our life means a lot. I know my heart is often full for folks who have anvils that look like ours. I have to think this communal concern for each other is a way in which we do help each other handle that which seems too much to bear.

Together we can at least shift the weight of that anvil just a speck, in a way an individual cannot.

Second, and for me at least, harder, I think God wants us to be okay with NOT handling things well, with accepting support from others. This can be harder. Wile E. Coyote always works alone…granted, look at how THAT ends up! Still, I think a lot of people (ok, me) would prefer to err on the side of Martha Stewart, to be able to juggle disaster while making Venetian Cookies decorated with edible gold leaf. That would be MY preference, certainly.

And yet that is NEVER my reality. I can’t imagine edible gold leaf even tastes that good, really.

So we can help each other handle the unbearable, and we can receive that support. The anvil may weigh the same (and it does. It really is bone crushingly heavy), but we’ll keep on keeping on.

God does give us more than we can handle. I just have to hope that someday it’s less of a Wile E. Coyote moment and more of a Price is Right Showcase moment…”a trip to Paris…AND a set of snowmobiles…AND a lovely dinette set…AND an 87” flat screen tv!”. Hope springs eternal… ; )