Finding the Toolbox When Life Hits the Fan

I am not sure why I am surprised.

I should have known that as soon as I began to really focus on trying to put into words my attempts at Zen, all sorts of things in my life would just hit the fan. Thankfully, today things are ok medically—but for some weird cosmic reason, I can’t seem to have EVERYONE and everything in my life chill at the same time.

Urp.

Challenge is like a Mothra sized mosquito buzzing around my life these days. 

I listened to a podcast on Monday (Oprah Super Soul Conversations) in which two Sandy Hook parents talked about how they have dealt with the aftermath of that terrible event. The mom referenced her “toolbox”—the things she goes to on days when life seems too difficult to bear.

I have been thinking about that term/idea a lot these last few days, as I struggle to balance my own personal train on its precarious track.  I realized that is kind of what I’ve been trying to do—to assemble a toolbox.

Of course, much like my ACTUAL toolbox, it’s kind of a mess. Reorganizing our ancient toolbox is on my to-do list. But in the last 2 weeks I have been really, really challenged to dig into my Zen Toolbox to try and get through some difficult moments/situations/days.

To clarify (OH UNIVERSE) I never prayed for practice sessions with my focused work on not being a psycho. Ugh.  I already had cheerful bloggy stuff PLANNED.

Note to self, NEVER PLAN.

I love planning. Planning is my favorite. My lists have lists.

Ugh.

I am the poster person for “the best laid plans…”

Anyway, I am needing to dig deep these days. I just have to acknowledge that:

 a) it’s ok if I am not on my A-Game when hard stuff swarms about. Just continuing to move right along has to be enough. No one is harder on me than I am.  If the papers don’t get graded for a few days, that’s ok. If the sheets get changed one day later than I planned, that’s ok. If the cheerful blog about The Happiness Project remains in draft form, that’s no biggie. Chill already on the A-Game business.

b) Sometimes using the tiniest tool is a good step. Yoga helps me. So I find a 10 minute yoga on YouTube because focusing longer than that seems too daunting. Podcasts help—so I listen to Kind World, a 5 minute podcast about acts of kindness. Prayer helps—I read one meditation or scripture quote. Being outside helps—so I sit on my deck for 5 minutes and just breathe. Small tools sometimes can at least move towards getting the job done.

c) These moments are when I need my people. So grateful for my people.

d) if all else fails, Pumpkin spice English muffins with real butter and maple syrup are very therapeutic (wipes crumbs off keyboard). I am hoarding my last bag of Cadbury.  

Just keep movin’ right along.

I’m telling myself that today.  What kinds of things are in your toolbox? When it’s just so hard to do the things that help—what do you do?

Peace—and if you can spare us a prayer/dance by the light of the moon/good thought, I’d appreciate it.

*still, I am giving myself a gold star for actually publishing SOMETHING today--a little something, but at least that goal is met. :)

Another Perspective

Another perspective.

So…I have to blog something that I know people will disagree with. I have to, because I teach my 12^th graders to speak out, to not be cowed by public opinion when there is something they believe in that needs to be spoken.


Today I saw something that made me think, and realized I have to practice what I preach. Ugh.

Seriously, I've had a silly blog written for 2 weeks and haven't posted it. Ugh. But this...just wrote itself.

So please, if you read this, just hear this as a different perspective. Not a judgment, not a rant, just a perspective that I think sometimes is missed…a perspective that comes from my faith tradition, but also from my role as mom to two NF children, one with a moderate case, one with a severe case, wife to a man with NF, and advocate for kids with NF.  Everything here really is meant to be said with great respect and lack of judgment: if it comes across otherwise, please forgive my clumsy use of language. I truly just want to present a perspective that isn’t always spoken.

And I get that people may very well have the opposite opinion. That's ok.
Can you tell I hate stirring the pot? sigh.

Anyway, I saw an online article today about a family that used a new technique called pre-implantation genetic screening before  IVF to make sure that they had a child who does not have NF.  (Boy-born-free-of-potentially-deadly-gene-thanks-to-IVF-screening)Embryos were examined, and the one eventually implanted was found to be NF free. The family is very happy with their child (which makes sense, children are a huge blessing, and this family obviously thought long and hard about how best to have their family). Doctors are pleased that the "controversial" selection process worked so seamlessly.

And I felt...uneasy.

I just felt troubled by this process, the selection process, I guess. Because where scientists see NF the disorder FIRST, I see my NF children, children who by this process would not have been born.

I get it, I do, the fear parents have when one has NF, the knowledge that even a parent with a mild case can have a child with a more severe case. I have that t-shirt in blue, pink, and purple.  And I understand, heck, I work very hard to fund research to make NF NOT destroy my children.  We’ve had some close calls in this house.  Really close.

This week was MRI week for my child with the severe case of NF. We compared this scan to the one that showed massive tumor progression in an inoperable location in May 2012. I get how bad NF can be.

And yes, my children have endured suffering. This is the worst part of parenting, seeing my children suffer—but I also see them thrive, and succeed, and bless others. I see them laugh with friends, sled down a hill, go to school, dance in the Nutcracker…heck, my second born danced in the Nutcracker (in the way she does) 4 days after brain surgery.  And when she was up there being a Lead Gingerbread, her hair carefully arranged over the surgical incision, and with all the little kids twirling around her, I didn’t see NF. I saw my child.

Yesterday my youngest got her back handspring alone for the first time. I saw my child, not NF.

When our little buddy calls for G to help him with his chemo, even DURING HIS CHEMO we see this riotously funny and spunky kid, (and often his cat), NOT NF.

When G’s friend pins her latest nail polish design on Pinterest, we see a hugely styling and creative kid, not NF.

When a friend out west sings his heart out at karaoke, we see a boy with the voice of an angel, not NF.

When we hung out with our friend Sandra, we laughed, we watched Sponge Bob, we ate ice cream, we saw her amazing heart and spirit in everything she did, even as NF took her from us.  We saw HER, not NF.

All of these children…well, that’s what I see. That’s my perspective. 

There’s no such thing as life without pain. Well before I had heard of NF, LONG before I could spell it, I had pain in my life. Much of my own life journey has been trying to focus on the joy in life. My children are joy. Ok, they drive me insane, too, but really—their lives better the world. And they love life.

At teacher meetings this year, my youngest daughter’s teacher told me this: that my R had said that yes, sometimes NF and brain tumors are hard, but because of them our family has gotten to meet such wonderful people, such kind and amazing people, such great friends.  Her teacher got choked up telling me this, and honestly, I was …well, what do you even say to that? A few weeks later at home my R said the same thing to me, her head tilted to one side, her crazy hair loose around her face. “We are pretty lucky, mom, we know so many great people because of NF and brain tumors.”

Yes, we are.

An NF mom once said to me that her NF child sometimes felt sad when he saw the tagline END NF. He took it personally.  I think that’s kind of the same moment here—I understand why families may want to make this choice, and I do not judge them for it—I just see this through the lens of a different perspective—I see MY NF children as not making the cut in this process.  I would hate to have lost them to NF before they were even born.

And while we will NEVER stop working for better treatments, for more research, for a cure (my brain is dizzy some days from reading about MEK inhibitors and bRAF this and that) —we hold on to this perspective that sees the person first: with all that may entail, the unique, amazing, mighty, funny, loving, compassionate, persevering kids and adults we know and love…and the disorder second.  My husband has said that his experiences with NF have made him the man he is today—one who never judges by appearance (EVER), one who is always ready to help, to lend a hand, to show compassion, to work hard for his goals.  I hope and pray my girls get to grow up…and be like their dad, and the other amazing NF grownups we know.

That said, I better go work on stuff for our next fundraiser, our Coffeehouse for a Cure…FOR NF! 

Thanks—I know folks may vehemently disagree with me, and I respect that. I hope that folks can respect this perspective too. 

My Pretzel Shaped Cocoon

I want to be a pretzel maker.

No, I don’t mean I want to make a batch of pretzels. Been there, done that, it’s kind of a Lent association for me now. And when you can buy frozen pretzels for under $2…the flourtastrophe that making pretzels always becomes is even less appealing.

I want pretzel production to be my JOB.

I know, this seems bizarre, but bear with me.

A few weeks ago, just after our first familial visit to the Reading Terminal Market in Philadelphia, (a culinary nirvana), my youngest and I discovered an Amish market right across the street from her dance studio.

Now, the nearest Amish person house is over 2 hours away from where we live, so discovering an Amish market close to somewhere we go 2x a week was a bit of a novelty.




I know, "discovered" seems silly. It's a large building. But it's only open on certain days, and we had never been there when it was open until a few weeks ago. Hence our discovery. Not unlike European explorers "discovering" America. Like it wasn't there before? hm.


Right inside the building is a large pretzel making area. 4 Mennonite girls work kneading dough, shaping dough—stretch, flip, twist, done!-- taking dough (now magically pretzels) in and out of an industrial oven, dunking pretzels in a crock pot of melted butter (!!!), globbing cinnamon raisin pretzels with sugar glaze, wrapping little hot dogs in pretzel dough, creating 16 other variations of pretzel bites and sandwiches and wraps of delight, and cheerfully taking money from hungry pretzel cravers.

Which of course included my youngest and me.

Oh, the raptures of buttery delight! Oh, the sticky glaze covered fingers! Oh, the fresh squeezed lemonade! We were instantly hooked. I’m not even really a bread person, per se, but these were insane carbalicious perfection.

Pretzel procurement has now become a weekly tradition.

And then…life continues on. And lately, that continuation is just…so…meh. Little frustrations, epic stupidities, schedule impossibilities, back to school stress, work stress, and the over-arching lens of catastrophic illness…I am left so often feeling like This Is Not What I Wished For.

This isn’t a new road, and it runs super close to Whiny Whinestreet, so I want to step carefully. But I was left thinking, after seeing those Mennonite girls working and smiling and pretzel making like crazy, that I should love to be a pretzel maker. The work is so tangible, so instantly gratifying: mix ingredients in proper way. Shape. Bake. Dunk in butter. Sell to happy people (because pretzel buyers seem to be flush with happy anticipation, at least from our brief studies while on line).

There is something so basic and lovely about feeding people as your job.

Ok, so I’m mom. And I work fewer hours than my spouse (way fewer). Feeding people IS my job, but I don’t mean feeding people a protein, not too much carbness, forcing them to taste the salad or broccoli or veggie of choice. THAT is a thankless task most days. Don’t get me started. But feeding people something delicious and lovely, something that’s a treat…pretzel making would be like making cupcakes for a living but without the pressure of making frosting look pretty. My baked things taste fabulous. I have zero patience for decorating beyond a dash of festive sprinkles.

In these days where life is once again living me, I long for the comfort, the safety, the simple pleasure that those pretzel girls seem to have. I do NOT want to be Mennonite (can you imagine my spastic hair in a bun? Or my giant fat head in a little cap? Or LIFE WITHOUT FACEBOOK?? The horror!), and I know that those girls are probably exhausted and super sick of flour and yeast and splatters of melted butter by the end of the day. But there is something about pretzel making, about making people happy AND doing a good work that is super appealing.

I had several years in which I got to be a stay at home mom. I am grateful for that time, even though sometimes money got really tight and I was generally plagued by self doubt. I admit that DURING that time I always felt like I should be working, I needed to do craft fairs or try and write or do SOMETHING to bring in some income. I felt exceedingly BAD at the SAHM thing. My house was always messy, my kids tended to look happily feral, I felt overwhelmed by sleep deprivation and the deadly plague of SAHM comparisons. I never felt good enough at that whole SAHM gig. I tried really hard, but…yeah.

At the same time, I did routinely sew my children clothes for special occasions, and heck, I sewed most of MY special occasion clothing too! I would cross stitch everyone an ornament each year for Christmas. I made random tchotchke out of toilet paper tubes and construction paper. I would cook, and read stories, and then feel guilty for playing FreeCell for hours. Some things, some nurturing kinds of things, those I COULD do. And I miss that, in the crazy hectic yikes our life has become.

Now I work part-time in a job that takes about twice as many hours as I actually get paid for, which is largely my own skewed sense of This Must Be the Best History Class EVER-- EVERY DAY. My house is still a mess, my 10 year old never detangles her hair, my visually impaired/comfort is everything and I don’t want to run up the stairs again teen creates some insane fashion statements (soffe shorts, a tie dye shirt, knee socks and school shoes?), and my first born lives in a biohazard lab. Our weekly schedule looks like a write up of the tactical plans for the assault on Normandy. My dining room table is obscured not by toys and craft projects but by paperwork. Instead of toddler toys all over the floor we have puppy toys all over the floor. I know the pizza place phone number by heart. I’m not sure I’m any better at this gig than I was at the SAHM one.

But now my kids are older. The baby is in 5th grade, and I feel the strain of being done with “mom of little kids” far sooner than I had planned, especially since so many of my friends and family are still having babies. The weather is turning colder, and I think I just want to cocoon my kids somewhere safe, somewhere different than the perpetual stresspot we seem to flounder in so often. Looking at old pictures, we used to be a lot better at just BEING…but maybe that’s the skewed lens of nostalgia.

I have been baking a LOT, and lighting pumpkin candles, and sorting out drawers and things. This feels good, somehow.

Maybe it’s just the change of seasons, maybe in a past life I was a bear and I just want to hibernate, maybe I really AM supposed to just stay home and bake and try and create a HOME for my family instead of a base of operations…

For whatever reason, that pretzel job seems so delightful right about now.

Do you have anything like that? That job/place/moment that seems like it could just be so nice…not the umbrellas and sunshiney beach kind of place, but the cocoon moment? Where do you find that space?

And in the interest of full disclosure, as soon as I wrote the first draft of this I brought one of my children to the aforementioned market, which then led to a complete hypothalamically driven pretzel-tastrophe. Sigh. So much for the cocoon.

At least in my search for that cocoon, I have left a giant trail of baked goods in which to find solace. ; )

My sister took this picture with her phone. How do you like THEM apples? I mean, the actual apples with caramel sauce. And my pumpkin shaped cake. Yum.

Stuck on the Shoulder

Life can never be exactly what you want it to be—
I could be satisfied, Knowing you love me…
(This is dedicated to the one I love)

I’ve reached epic fail on the blogging front.

For both of you who read here, I apologize. Not because I have some deluded sense of Sin of Word Deprivation, but because I’m a creature of habit who obsessively checks several blogs regularly. I know that twinge of disappointment when there are no new words to be read.

I’ve hesitated to post this. Nobody wants to read Confessions of a Waaaambulance Rider, and I feel like the descent into whine is never more than a step away. But I hope that by at least putting some words on screen I can take some kind of step, even if it’s a slippery one.

When I began this blog, I called it “Moving Right Along”. As a Jersey girl/manic mom/sugar addict/high school teacher/wannabe runner/bearer of an NF-brain tumor flag, my life tends to hurtle forward, kind of like Daffy Duck in the Robin Hood episode…

“ I trip along merrily! I trip along merrily! I trip I trip I trip I trip I tri-hip up and down! I trip trip trip trip (falls down hill)…trippity trip trippity…I tri-hip it up and down!” .

Well, that, and I like Muppets. Inordinately.

But recently, for whatever reason, I am not going anywhere.

I’m still busy as all get out. School has been a challenge: a good challenge, but a challenge nonetheless. My teenager defines Challenge, generally not in a good way. My little ones…well, one isn’t so little anymore, and she’s trying to make sense of growing up. My baby is my heart, a balm to my soul (albeit one that can NEVER find her socks or her ballet tights and forgets herself in a game or movie when I send her to do a chore). Everyone has activities, everyone has projects, everyone has needs and wants and the washer is broken and my spouse’s running clothes REEK and I have no clue what to make for dinner.

In that respect, life is moving right along just like it always does.
But somehow, lost in the late summer, my heart is stuck, my mind is frozen. Well, frozen in the sense that there are 57 million ice cubes racing around inside the frozen brain and yelling at any given second. This is most annoying at 5 a.m., but it gets old at any time of day.

I can go into a store, and see something that puts me right back in 2004. Yesterday it was those crazy erasers, the little Japanese collectible erasers my girls are nuts for. I saw a sushi set…and instantly was back in the onco playroom, where the play kitchen set had a somewhat disturbing plastic sushi play food collection. Today it was a song on the radio, more accurately a conversation about radio songs that meant something, followed by the thought of the song that was playing when we headed to Philly for biopsy results in 2006. It’s like my mental TARDIS is broken (not unlike the actual TARDIS often is, which I guess should be comforting).

It’s like the crazy vines in the movie Jumanji, or Audrey II in “Little Shop of Horrors”. The vines catch my ankle and drag me down…and darn, they just keep
growing.

Many of our long time friends in our community of woe are really suffering. Many are reaching that point in the journey that is the nightmare of every parent, but an acute agony for the parents who walk this long road too. Every child suffering, every parent suffering, is another tendril that holds my heart from moving.

Why, after 6 years, this is such an issue, I have no idea. Anyone? Bueller? Bueller?

Last night I saw a quote on Facebook that said, “Anxiety is the crippling fear over some possible future evil. The irony is that, except for sin, anxiety is a greater evil than any evil that could possibly come upon us -- for anxiety disquiets the entire soul and renders it unfit for any good work.


While I don’t know that anxiety is a greater evil than any ACTUAL evil –about 10 minutes in a pediatric intensive care unit with your child kind of puts the doubt on that—I do see that the disquiet of anxiety, the noise, the 57 million ice cubes, can get a gal stuck. The noise makes all other words, all other blog entries, just seem meaningless.

I am waiting and hoping that the poster of that quote posts the “and so you do this and live happily ever after” follow up quote…

And waiting…and hoping…and waiting…and hoping…

But in the meantime, I am trying to make sense of things, trying to embrace once again that life really can never be exactly what I want it to be, but love truly makes things bearable, if not better.

Hopefully as we get into Thanksgiving I can get some of my verbal and mental mojo back. I don’t really know how, but as a Jersey girl/manic mom/sugar addict/high school teacher/wannabe runner/bearer of an NF-brain tumor flag, I really don’t have the time to be caught in some mental game of Chutes and Ladders, where every step forward leads to a big twisty slide down to yikes.

Really, NOBODY has time to be “merely a flesh wound!” everywhere she goes.

I’m not sure how to do this; but I hope that I can start moving right along again, that I can formulate coherent sentences and get the washer fixed. Until then, I’m going to see how many more movies I can reference in a single blog entry… : )