Monday, February 18, 2013

The Sparkly Unicorn Killed My Alarm Clock

Ok, that’s a lie.

My alarm clock was old, really, really old, like older than any student I have taught in the last 5 years. But I promised I would reference a sparkly unicorn this time around, and it makes for a Much Better Story if I say that the alarm clock was slain by a mighty Unicorn that shot sparkles from its horn.

Yeah, it LOOKS sweet. Watch out!

Go figure, I promise you a sparkly unicorn and the only one I come up with is a violent destroyer of innocent alarm clocks. Meh.*

But when I started the last post, I actually MEANT to talk about my broken alarm clock. I didn’t mean to alarm people, somehow the flash flood of yikes that accompanies post-scan day attempts at zen carried me well downstream of my initial point.

And THAT, my friends, is reality for many an onco/nf parent.

My alarm clock was a gift for my high school graduation. Remember, when I graduated from high school we didn’t have Target or Walmart, I figure my neighbors who got me the clock had to go down to Ye Olde Clocke Shoppe and ask a wizened old man to craft me a clock. Er, a clocke.

Ok, maybe that’s overstating things, but I know my neighbors put time and effort into finding this clock for me, because it has GIGANTIC NUMBERS. Exceedingly large numbers. Comically large digital numbers. My neighbors (who knew I am ridiculously near-sighted) thought it was hilarious, the funniest gift ever. I kind of thought it was awesome, as evidenced by the fact that I’ve had it (gulp) 23+ years.

Comically Large Clock next to regular travel clock. Yeah, um, it wasn't 12:12 when I took the picture. Sigh.

The funny thing is, in high school I NEVER used an alarm clock. Ever. My mom always woke us up. She is a crazy early riser, so she would just come tell us to get up at the right time and we would. I am a light sleeper, so…yeah. It worked.

I now have two children who require a cattle prod to remove from bed, (unless it is Saturday), I am daily flabbergasted by this.

Even now, if I have to get up crazy early for something, I set my alarm, but I ALWAYS wake up before it. On scan day I knew I had to be up by 4:35 a.m. I woke up at 4:30.

It’s awkward when THIS is your party trick, but hey, what can I say, my internal Stressometer is better than even my Comically Large Numbered clock.

I realized on our most recent scan day that my alarm clock (which had been freakishly blinking for a month or so, maybe trying to send out some kind of final Morse Code-ian message of farewell) would not let me set the alarm. In fact, it stopped bearing any resemblance to the actual correct time. My internal Stressometer needs the setting of an alarm to make it work (even if I know I’m going to turn off the alarm before it goes off—that only works, I think, if I SET the alarm, then my Stressometer kicks in). Alas!

So I used my little LL Bean travel clock instead. My dead alarm clock is now turned sideways on my night stand, still blinking.

I feel bad pulling the plug.
See, it looms, a comically large number peeking over Our Lady of Czestochowa.  . And yes, my nightstand is always a tidy asssortment of icon, G giraffe drawing, Lisa Brown art, and a painted rock I bought from a kid at a craft show. And a little card with an inspirational verse. And a paper heart my 10 year old made me.
Ok, so I moved the random sock & the 3 necklaces (missed one!) and a pair of earrings and the 3 lip balms rolling about. But the clock is looming.
And do you KNOW how hard it is to get a picture of a blinking clock mid-blink?

And while I am not going to draw any cumbersome metaphors about Time Passes And Passes Away Like My Ancient Comically Large Numbered Clock while humming “90 years without slumbering..tick tock tick tock…life’s seconds numbering…tick tock tick tock”, I have been thinking about time. (See! This is where that other scary post started! Hah!).

This clock was a gift from someone I now only see at funerals, a family I spent a lot of time with as a kid. I always think of them when I actually THINK about this Comically Large Numbered clock. When I got this clock I was 17 years old, just graduated from high school. I now have a line item in my teeny tiny budget notebook for “saving up for graduation gift” for MY OWN CHILD. Yeegads. Where the heck did that time GO??

So I know I have to actually get rid of my gigantic number clock and get a real clock (my travel clock has to be bopped to light up, and I am so dreadfully nearsighted I need to have a clock I can SEE without flailing about, so I don’t keep flinging my glasses off the nightstand every time I try to check the time when I am up in the night pondering life). But this is a little bittersweet, because this silly clock outlasted SO MANY THINGS in my life.

Yes, in my cedar chest I still have the teddy bear shirt that I had that matched my high school best friends’ teddy bear shirts (you know it!), I still have my dusty yearbook with my awful picture (which I knew was awful then. Yes, I have always been Susie Sunshine), my sparkly unicorn stickers are still in a box, although I’ve given most of those to my kids. I have some things tucked away, but this clock, I used it EVERY DAY. I got it when life was large and promising and full of possibility. The clock went to college with me and my first apartment and then to my married apartment and then to this home. Years and years and years of my life have been measured by this Comically Large Numbered clock.
You thought I was kidding, didn't you. I do not kid about hoarding sentimental items.

I have had this clock longer than I have been married. Longer than I’ve had children. Heck, longer than I’ve had glasses smaller than dinner plates. Long time.

So I guess I need to go shopping this weekend and find a replacement clock. But I will remember the kind neighbors who gave the original Comically Large Numbered clock to me, the good times and hard times it has measured, and how getting to own a clock for 23+ years is a blessing – we know so many folks who don’t get that many years on this planet—so once again I am left thinking, How Can I best Use This Time Given Me?

Even if it’s no longer measured by a Comically Large Numbered clock.

And you know, since my soon-to-be-graduating child is one of my cattle prod morning kids, with the money I’ve saved maybe I can get him the Mother Of All Alarm Clocks for graduation…


*no sparkly unicorns were injured in the writing of this post.

Wednesday, February 13, 2013

Of Lent and Loss

This is too long, again. I shouldn’t write within 96 hours of looking at brain scans full of tumor, but that is when the Words Need to Come Out so I don’t go all Violet Beauregard and risk popping. You all are better than therapy. No joke.

So it is Lent again, and I can’t help but think “LENT” in sort of the same way that Jerry Seinfeld used to say “Newman….”.

Over the last few months especially I’ve been plagued with a deep sense of loss and a nagging sense of the passage of time. When you have 5 years of precarious stability and that feels like a heartbeat in the face of restarting treatment, time takes on new meaning once again. Five years was nothing, and at the same time so much MORE than what many of our friends get.

Plagued is the best word for it.

Since the new year I have been trying to make sense of the ever growing moments of loss that just keep showing up… loss of trust… loss of honesty … loss of joy … loss of hope on fronts OTHER than brain tumor… loss of hope on that front too, some days … loss of relationships… loss of excellence (or the hope for it, more accurately) … loss of camaraderie… loss of dreams…

Some of these things are in my own home, some are due to our medical situation, some in the places I go each day in normal life, few of them are within my control.

As a Card Carrying Control Freak, this list makes me lose sleep daily, because I NEED to control them. Ahem.

Maybe for Lent I should just be a hermit. I could move rocks around, and control my little cave or yurt or whatever…

I have tried to be a rock and an island (which of course feel no pain and never cry), but that hasn’t worked out great, because I am plagued by honesty, too. I can’t be fake. I have tried throwing myself into things 150% only to find that ultimately, it is a 150% that doesn’t heal the losses that follow along our 8 year path like vultures.

Hey, it’s Ash Wednesday, and I am Catholic, you’re gonna get extra gray and dismal today, what can I say? And I drove under trees full of vultures yesterday on my way to work. Ugh.

Although honestly, this plague of loss and time have been with me for a while, just the last 6 months or so have brought everything into stark light.

And as we lose things, some of which can’t be regained – some of which are so deep I can’t blog them here, even though I wish I could just be honest and yell out the hard truths we’ve come to see over the last several months (both me & spouse—it’s a family plague, nothing brings a family together like a plague)…at the same time, I feel like time is racing on, and the opportunities to regain lost ground or at least find a new ground to stand on are slipping by.

Ashes to ashes and dust to dust…

(says she who hasn’t been to Ash Wednesday Mass in years. The ash thing messes with my Extreme Need for Personal Space, alas. I think you miss the spiritual benefit of that Mass if you are crawling out of your skin the entire time. But don’t worry, I feel appropriately guilty about it, even if it’s not an HD of O).

For us, our daughter’s diagnosis in 2004 was a massive earthquake, a 9.8 on the Richter scale (subsequent events got us to 10, but whatever). In the immediate aftermath of diagnosis we tried to continue with all the things that had anchored our life to that point—family outings to baseball games (where of course our daughter fell and hit her head 2 weeks after brain surgery), Rutgers homecoming (where she had a massive OCD freakout and tried to pull away from us, screaming and crying in a crowd, so she could “re-walk” a piece of pavement until she got it right), prayer group meetings (where I sat outside the main meeting room with a jacket spread on the floor so my daughter could lie on my lap)…we tried so hard.

I tried to keep writing, we tried to do service things with the prayer group we were involved with, I volunteered at my son’s school, we tried and tried to hold on. And for a while we did, even through some really dark times, even through meetings at school where people asked how our daughter’s frantic behavior should be addressed as a character issue, through endless days with G coming into our bedroom at 3 a.m. because she felt horrible, of the constant stress of never knowing if her counts were going to bottom out and we’d be racing back to our hospital 2 hours away for more transfusions, of our other children sleeping in our room every night for 2 years because they were afraid we’d end up unexpectedly leaving for the hospital.

Every night. For 2 years.

PTSD is real, people.

And so many people helped us, in the first 3 months of G’s diagnosis I never cooked (I didn’t eat much, either, but that’s another story), my mom’s friends fed us for months, when G couldn’t handle her 1st grade classroom a group of ladies from our prayer group volunteered to come in each afternoon to work with G one on one…every day…for months. Three of my friends who later died of cancer made a point of sending G cards regularly when she was on chemo, just encouraging her because they knew how it felt (Nora * Denise * Marge) . I will NEVER forget those acts of kindness. Not ever.

Since the darkest days of 2006, our world has been rocked by aftershocks of that first initial earthquake…moments that rattled our foundations. So many things we thought were true, we now know are NOT true, or at least aren’t as plainly true as we always believed. The fragility of life trumps everything, and we hang out in circles now where we see that our earthquake was only one of many—so many families bear these losses and these pains.

The aftershocks continue, and every time the dust settles I see another loss. Most of our closest friends/family don’t live here anymore (I am so grateful for my family, who, despite our distances, somehow manage to stay close), and I don’t know how to bridge distance very well. Some relationships have been irrevocably damaged because of a loss of honesty…and that can’t be fixed. In the last six months I have come to realize in multiple situations that if someone cannot acknowledge that they are being dishonest —maybe they truly don’t understand, which is mind boggling to me, how can you willfully not try to understand things?--, if this is the case, you can’t fix things… it’s a philosophical concept called contradictory diversity—and you lose. Everyone loses. And the loss of relationship is always a sad loss.

There just isn’t anyone to TALK to about things (hence the Miserable Manifesto here), I am no longer at a point where I can randomly join a nice group of people and unload my trunkload of woe on them. Talk about junk in the trunk…yeeks.

Despite the way we raised our kids (or tried, before diagnosis and in those early years), not all of them always make decisions we are ok with (understatement of century). Seeing THEIR wounds (again, especially in the last few months) just rattles our world again and plagues our sense of having anywhere secure to stand.

So when we roll around to Lent again, a season of sacrifice and penance, I just don’t have a lot left. Yeah, I can give up chocolate (not gonna happen), or coffee (you don’t want THAT to happen) or do all the little food sacrifices I used to so scrupulously do when I was younger…but now I’m not sure any of them mattered. Did they make any kind of spiritual difference? Did they bear any lasting positive results? I think this Lent I want to try to do positive things to at least find some footing amidst the aftershocks.

I need to try and forgive. And I don’t know how to do that, when it’s years and years of hurt, how do you do that? But I have to try. And I have to make peace with our losses. I have made peace with my daughter’s illness. I have. It is what it is. But I am not always at peace with what this illness has cost her. This I am reminded of a lot recently. This illness has cost her so freaking much. And she is just a kid. I need to try and make peace with this so I can best help her be the beautiful young woman she is meant to be—even if that isn’t the same as most other 14 year olds. I need to make peace with that.

This morning we put out a little candle and said a short prayer with our girls (our son leaves early for school, and it’s never pretty getting him out the door). This is a teeny tiny first step—not that I think God Will Send Downeth His Mighty Hand or anything, but it’s a little Lent thing we used to do, a little foothold, a moment to focus at the start of the day and not let the earthquake drop us before I even get my second cup of coffee. I did a quick 20 minute workout again, which hasn’t happened in the last few weeks more than once because of work (I spend 2 hours before going into work every day working at home)—I have to prioritize my health again. I will TRY to spend a few minutes a day nurturing connections with people. I will keep Christmas the whole year through…

Oops, got carried away there.

I know these things won’t make the losses go away, the losses of so many of our family’s hopes and dreams. But I hope if I will myself past the paralysis of cumulative loss and try to dive into the time we DO have (instead of just clinging to the good things—I want to embrace them and drink them in), maybe I can find some footing again, and help my spouse find HIS footing, and hopefully find solid ground amidst the aftershocks.

I know that a lot of folks who read here might have insight on this. Where do you find your footing amidst the aftershocks of bad stuff in life? How do you let go of the things you can’t fix (and I don’t just mean medical catastrophe)? I have tried so many things…

How do you forgive? How do you forgive when the folks you need to forgive seem to not get that there has been so much wrong done? Really, these are not rhetorical questions…what do you all DO?  Heck, how do you forgive yourself for not being able to spare your children the wounds that come with catastrophe?
No joke, the hermit thing is looking like a viable option, if someone is willing to take the dog out every so often while I’m in my yurt…

Thanks, all…

And next time I promise, I will reference a sparkly unicorn or something. ;)

Sunday, February 3, 2013

"We Must Labour to Be Beautiful"

“To be born woman is to know—

Although they do not talk of it at school—

That we must labour to be beautiful”

--Adam’s Curse, William Butler Yeats

When Yeats wakes me up at 6:30 am on a Sunday, I have to acknowledge that—even though nothing here is really all that original, and as usual it’s too long…but it woke me up this morning. So here goes.

In the last week or so I have had many striking encounters with beauty in the midst of lots of not beautiful. The mind-numbing context of our family’s daily realities can’t be denied, and I hate referencing it so often here (and I leave out an awful lot), but it truly covers every aspect of every day of our lives like a blanket of deep snow, cold and painful. Still, to paraphrase Superchick, there is beauty in pain.

Not that any of these things are PRETTY. Nothing about pediatric oncology or its effects on a family are PRETTY. But the warrior children I know are beautiful, 1000%.

Oh, the difference between pretty and beautiful. As a teen, like so many other teens, I so desperately wanted to be pretty , in those days LOooooooong before Zoey Deschanel made “adorkable” even a concept. Back then, it was just dorky. Meh. Today, kids are relentlessly bombarded with plastic representations of “pretty”—I get so irritated with the tv shows that reinforce the impression that ALL 7th graders have fabulous wardrobes and perfect hair and makeup—the pressure is worse now than ever. And even us older folk are constantly shown “real” people who are desperately aiming for pretty all the time through endless pursuits of botox and bigger bosoms and bedazzling.

( thanks to Kathy & Michelle who inspired that burst of alliteration) 

Don’t get me wrong; I love fashion, I haven’t been naturally brunette in 10 years, and hey, if you want to de-wrinkle via injections, go for it—but it’s not the key to happiness or the way we as women have to be defined. Now that I am old (and wrinkly, it’s true), I know that pretty ain’t gonna happen, and that’s ok, because really, does it matter? But maybe I can ”labour to be beautiful”… the real kind of beautiful…

BEAUTY is so deep, and so broad in scope. Beauty is powerful. Not to diss the Bible (I am so not dissing the Bible), but TRUE beauty isn’t fleeting. Beauty really does come from within. Beauty is mighty.

A week or so ago I read about a beautiful baby, a baby named   Pearl Joy Brown  who has a rare, unpronounceable disorder that may very well cut her life short. The fact that she survived to be born is something of a miracle, and the miracle of her life only makes her more beautiful. I was so struck with her beauty and her parents’ story of choosing hope in the face of overwhelmingly grim statistics—not an unrealistic hope of miraculous cure, not a denial of how dark some of their days are, or how precarious Pearl’s life is, but a hope that love and the inherent dignity of every human life would prevail no matter WHAT the medical outcome for Pearl. I shared Pearl’s story with my students as we talked about ethics and life issues in class…and how honoring the humanity of every child, healthy or no, special needs or no, is always beautiful, even as some days it is painful and brutally hard .

With some of the materials we covered in class this week, I also remembered again the intense beauty of Mother Teresa—that teeny tiny Albanian nun whose ministry of love transformed (and continues to transform ) the lives of so many people around the world. Mother Teresa is beautiful because of her words and ideas and her work, her love in the midst of the spiritual desert that no one knew of in her lifetime. I only got to see Mother Teresa once in my life, and even as a teen, I knew as soon as I saw her that I was in the presence of a saint, someone whose generosity of spirit and CHOICE to love changed the world. She literally had an aura of beauty and quiet power, she radiated love. 25 years later, I have not forgotten what that was like, to experience being in her presence, even from afar…

And yesterday…I saw pictures of a friend, glamorous, gorgeous photos of a friend who after years of battling the same medical demons with her daughter that we fight with our daughter (and with significant other complications), has had to enter her own battle with cancer.

Yes, THAT was a moment in which God heard a lot of unprintables from me. Multi-syllabic combinations of extremely unprintable words used as every part of speech. I used to teach grammar, trust me, I hit Every. Part. Of. Speech.

Anyway, my friend is through chemo, and her teen daughter, an extremely talented photographer, took these pictures…

The most beautiful, breathtaking pictures of a woman I have seen in a long time.  And this is only one of a half dozen equally amazing shots.

photo credit Allie Broeniman.
Yes, her momma is gorgeous, and Allie has mad skillz.

Pure beauty on digital film. A beautiful woman who HAS “labored to be beautiful”—not by putting on makeup (although her makeup looks great), not by finding a wig (she doesn’t need one, she rocks bald like nobody’s business), but by LIVING. By just embracing the miracle of life each day as it comes.
These powerful images of grace, and humor, and grit, and toughness ARE beautiful in the traditional sense—she looks fabulous—but they are SO DEEP. This beauty pours out of my friend from every…um, pore. These are victory shots, because these photos show a woman who has triumphed in this moment over extreme adversity, with the love of her family, the support of her friends, and the grace of God.

You may have heard the roar—she is woman, and these photos celebrate the genuine beauty of what that means. Dang, I am blessed to be her friend.

In these days where I feel mentally like a shriveled crabby crone (think Miracle Max’s wife from Princess Bride—that’s what I feel like), I have to try and reach for the beauty that we get each day. Every day, every chance to take another breath—beauty. I have to draw inspiration from these examples of beauty and figure out how to channel that EVERY DAY.

It’s a labour (yes, with the extra u—it is way more than a labor without a u to embrace the beauty in each day), that is for sure. Now to figure out how to do it…beauty isn't passive, it's's decisions and choices and living each day.

And THAT is what woke me up too early on a Sunday morning. The End...or really...another beginning...