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….

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.

Tchotchke Galore

If I was a drag queen, or a film noir star, my name would be Tchotchke Galore.

Sadly, I am neither. But through the last 13 years, tchotchke have helped me when I couldn’t focus on much else.

For my non-Yiddish-using friends, tchotchke are little decorative things of small value—knick knacks, bric a brac, etc. If you are a minimalist, or a hard-core Marie Kondo protégé, the tchotchke galore path to zen is probably not going to be one you would take. You will take one look down that cheerfully cluttered path and quickly dive back into the most recent issue of Simple Things.

I love Simple Things, too.

I love all the things. 

I am very much a visual learner—so SEEING all the things helps me stay on track.

When my daughter was first diagnosed with brain tumors, she was 6. It was the week before the start of 1^st grade. She went from a sassy diva playing Candyland with the PICU nurses to a very, very sick oncology patient overnight. Literally in 48 hours we went from normal to watching our child come out of brain surgery. We were rattled to our core, our entire family.  The first three or four  months, as G dramatically lost vision, developed severe OCD related to her tumor growth, endured weekly chemo at a hospital 2 hours away, a chemo that had her up every day at 4 am FOR THE DAY, struggled terribly with school and at least one teacher who didn’t understand that her behavior was NOT a “character issue”, but rather a @#*#^@^ brain tumor ravaging her brain…well, those first months were brutal in a way that quite honestly shakes me even as I type it here. Sigh.

Good thing I am over it. *cough

I could not focus on ANYTHING.  I had two other children, a 9 year old and a 2 year old who needed me to be mom, and I went through the motions of life, but barely. 

Early on, I needed a tangible, visual focus to help me cling to sanity. I dug out all my gray embroidery floss and learned how to make a friendship bracelet from my sisters (several were teens at the time), and I sewed the word HOPE in beads on that bracelet. 

I wore it until it disintegrated. Then I made a second one, and some that were just plain gray…

They still live in my nightstand.

I know it is hard to read, sewing letters on a friendship

bracelet is not as easy as one might think.

I needed HOPE to be VISIBLE to me all the time. I needed it on my wrist, like a quarterback keeps track of plays.  

I moved on to silicone bracelets that said “G-FORCE!” on one side, with G’s trademark smiley faces, and “ALWAYS HOPE” on the other. I wrote out scripture verses (Jer. 29:11 was a favorite) just to keep in mind that even though I felt so very, very hopeless…especially as G failed chemo one, and then did a year of chemo two and had a new tumor show up, and then started chemo three, which just blasted her system…and then learned that maybe her tumors had gone malignant and our timeline was going to be dramatically shortened…and THEN got a reprieve, a miracle of “nope, just a weird NF thing” after a biopsy, so we got to restart chemo #3 …

I needed some hope.

I needed to see it when I could not bring my mind to it.

Having a visual reminder kept me going when I could not just think of hope.

Through the challenges of the years following the first 2 horrible years, including many progression scares, actual progression, and another few years of chemotherapy,  visual reminders continue to help me. For years and years I carried a little booklet about Human Suffering with me, and never got past the first few pages (it might STILL be in my hospital bag). I just couldn’t focus. But a pin that says “Brain Tumors Suck” or “No One Fights Alone”? That is weirdly empowering, at least for me.

Now that we have a little space from the worst of things, at least for today, I have a few new pins—one says “Chose Hope over Fear”…and the other says “Kept Going”.*  I have a bracelet that says "It's not a sprint, it's a marathon".  Some days, seeing those reminders—that I DID do these things, I did keep "running",  even if barely, or only because people dragged me along—just seeing that helps.

I have a necklace that says “Hope is the thing with feathers, which perches on the soul, and sings the tune without the words and never stops at all” (Emily Dickinson).  I wear it ALL THE TIME. All the time. (Thanks, Zulily).  I almost need a line item in my budge for “inspirational stuff”. On bad days or good days or any day I need that reminder of the tenacity of hope (a lot of days, glad it’s a plain silver necklace) I wear it. On my nightstand I have a little rock that has the word “Hope” engraved on it.  On my china cabinet I have a tile that says HOPE, which a fellow brain tumor mom made for us at family brain tumor camp.  

Visual reminders help when I just can’t get my brain around thinking about hope.

Somehow, the tangible reminders are little tiny anchors in my day, holding me to the path I am desperately trying to stay on.

So if you are in the thick of whatever battle you are in, big or small—maybe find a little visual reminder to yourself, using whatever word or idea empowers you most in the moment. Write it on an index card or post-it (I am the queen of post-its, to my tidy husband’s chagrin).  Find it on a pin or piece of jewelry or a tchotchke at Hallmark. You might be surprised by how much it helps.

What sorts of visual HOPE/Strength/Endurance tchotchkes have you found that help you? I am always looking for new ideas.  

I think I might wear one of those old gray bracelets today…

*These pins are from Emily McDowell Studio www.emilymcdowell.com –she has some fantastic stuff(some of it uses language not everyone may be comfortable with, just as a n FYI). 

What Not To Say Part II: Merely a Flesh Wound!

Part II of What Not To Say, my tv show where people find out what NOT to say when talking to someone battling catastrophic illness. In this episode…

2. Merely a Flesh Wound!

a. “It’s all going to be ok”

I would suggest that for most people battling any kind of catastrophic illness with their children, the whole THING that makes it catastrophic is the underlying theme of “This really, really might NOT be ok”. Saying that it will be might make you feel better, but it makes the warrior or caregiver want to drop kick you (ok, maybe that’s just me) because it invalidates the depth of yikes being faced.

In Chemo Part 1 Section 2, back in 2005, one mom said to me, after finding out G had brain tumors (because G happily mentioned at her brother’s Little League baseball game that she was going to go on a Make a Wish trip but she wasn’t sure why—awkward!), “oh, but if the tumors are benign it’s not a big deal, right?”…to which I think I responded something like, “well, she’s still on CHEMOTHERAPY, and we can’t get the tumors out, and there’s no room for them to grow?” ; I didn’t even get to the vision loss and the neuropathy and the anxiety issues… and that was the last she ever spoke to me about it.

We don’t use the B word anymore. Nothing about the last 7 years has been benign. But I digress…

No parent EXPECTS people to understand the yikes. Truly. But don’t downplay it, dismiss it, or otherwise indicate that It Really Isn’t a Big Deal. Better to say nothing than to trivialize the crisis.

Honestly, I have some friends who CAN’T talk to me about my daughter’s illness, and I respect that and love that they are still my friends…the reason they can’t talk about it is BECAUSE the woe is so huge and scary. And part of ME being a friend to them is respecting THAT pain. I have friends who feel deeply about what’s going on, so deeply that they can’t talk “shop”. That in and of itself is an acknowledgement of OUR pain, and I see that as love. Does that make sense?

That’s technically a sneak peak of “Normalcy is Not a 4 Letter Word”…

Anyway, I get that it’s a hard balance between Uncle Clem and Pollyanna, but it is one worth at least trying to achieve.

WHAT TO SAY: “I am sorry. This must really rot.” Just acknowledge the yikes.
Or, “I can’t imagine how hard this is. I am just so sorry.”
That’s it. Thank you for acknowledging the reality of the situation. That means a lot.

b. “God doesn’t give you more than you can handle”

I’ve written about this before, in an earlier blog. He does. That’s ok. I mean, He does, but saying He doesn’t again diminishes the pain of the moment. It does not EASE pain, it just brings on this feeling of “well DANG, I am even screwing up being smote because this sure as heck FEELS like more than I can handle!” God may give us grace for each moment (sometimes even THAT is hard to tell), but that’s a different issue.

WHAT TO SAY: “Hey, I’ll pray for you.” Or, “I wish I could make it better.” We wish that too, and we appreciate the acknowledgement of our pain. (at least I do).

A sub-whatever of this is

c. “You are SO STRONG!”

Ok, so this is not an offensive thing to say. It’s just kind of…separating? Isolating? Like, the person battling is so strong in a way that makes them Different. Catastrophic illness is different and isolating enough. While this is really not said in a way that is meant to be sniggy—to the contrary, I think it’s supposed to be upliftin?-- admiration or whatever that is (fearful respect of the “there but for the grace of God go I” variety? ) isn’t quite what a warrior/caregiver needs.

Speaking from personal experience, “strength” is not generally the feeling that one has mid-battle. Sleep deprived? Stressed? Irritable? Hungry? Not hungry? Unfocused? These are better descriptions of way I feel most days. As a parent caring for a child with a catastrophic illness, I would LOVE to just hide under my bed some days. I do vacuum under there, it’s clean and my bed is pretty high up (it’s kind of old fashioned), so I would fit. I could live under there and just pretend that none of this ever happened.

Heck, there were days when my kids were all little that hiding under the bed seemed like a plan. Those toddlers can ALWAYS find you. I didn’t have a choice THEN. I certainly don’t NOW. Maybe doing what you ‘ve gotta do is strength, but it just feels awkward and stupid and kind of isolating to hear it said that way. Until I have a patriotic bustier and a Lasso of Truth (and the physique to literally carry that ensemble, ahem), I am not Wonder Woman. So this should go on the list of things to please not say.

WHAT TO SAY: “Your kid is so mighty.”

I know. This seems like the same thing, but I don’t think it is. In my mind, mighty acknowledges that something tough is being faced, perhaps with anxiety and trepidation but ultimately with resolve. It’s a semantic difference, but mighty seems more accurate. Also, I think my kid is WAY MIGHTIER THAN I AM. So thank you for noticing. : )

Next Time: I Thank God Almighty That I'm Holier Than Thou .