Thursday, March 23, 2017

Me, the Big Rock, and Mount Yikes--Movin' Right Along--Again



She Bloggeth!


Ok, so that is a little melodramatic, but subtlety has never been a strength of mine. My loud face gets me in so much trouble at faculty meetings, I legit have to stare at my notes whenever any person is talking—because even if I say NOTHING, my stupid loud face says all the things that one should never say at any meeting. 

But I digress. I haven’t even started, and I am digressing…this does not bode well.

BUT—I am determined. Words are both powerful on their own, and empowering, and my inability to write ANYTHING after telling our family story two or three years ago alarms me.

Our penchant for falling into statistically improbable bad stuff just finally caught up with me, I guess, and I lost all my words.  For the last twelve and a half years I have been pushing a Big Rock around. Sometimes I can really get it rolling. Sometimes I end up squished under it for a bit (ok, for years at a time,  2004-2006, and then for a couple of months in the summers of 2008,9,10, then 2011-2013, then June 2014, then three months of 2016…*cough).

 Recently, I just got stuck. Kind of like this:
Obviously I did not fill the last few years with art lessons.




And by recently, I mean for like, two or three years. Maybe longer.

Last year my Survivor Kid had whooping cough, technically “pertussis-like syndrome” since she had been vaccinated—hers was a “mild case”.

On a couple of occasions last winter/spring we thought we were going to lose her.  Like, in my kitchen. Mild my fat fanny. I can’t imagine how horrifying the full blown version is…

For whatever reason, that particular pitfall on Mount Yikes really derailed me.  We had made it through brain tumor hell AND high water and a stupid regular illness FOR WHICH SHE HAD BEEN VACCINATED could make my kid choke and turn blue in front of us?  The ER doc who finally gave us a diagnosis was remarkably understanding about why the two psycho onco parents in front of her were in full blown HELL NO mode.
mom note: the whooping cough booster seems to last about 5 years, so...you all might want to check on that. And just because one HAS whooping cough does not mean they are now perpetually immune. Fricka Fracka...
Even a year later, Survivor Kid’s little sister still gets twitchy any time Survivor Kid coughs.

This situation put about 4 tons more on the Big Rock, and added 15k elevation to Mount Yikes.  Mount Yikes was already pretty steep, school was tough, work was tough, life was life. Everyone has tough. That is what life is…we certainly have zero monopoly on Mount Yikes…

….And then we lost some of our long time BT and NF friends in the fall. I still don’t have words for that. So I shall just speak that dark moment, that moment that flattened me for a month, and try to keep pushing up the hill.

Since early fall I have been working through things, really focusing on exercise, and yoga (remarkably helpful, even 20 minute “Yoga for The Ridiculously Inflexible” videos that I do at home, by myself, where only the dog can laugh at me.  I talked to a doctor, and got some help getting my personal chemistry back in place.  I am trying to read things that will help or inspire me—even if I haven’t OPENED Full Catastrophe Living, it’s waiting here to be read.  I am talking to God. I am making an effort to connect more with other people, because I kind of moved into a bit of a cave on Mount Yikes during the last few years.

It is a work.

But I will do it.  And – well here I am. Writing something while both of my girls are at their new schools, doing great. My son—at his school, doing great (no random broken bones in January this year, well, not for him, just for third born. But we managed it.)   I am planning a two day getaway with Dave for the summer, it’s been two years and we need to just have a couple of days near the ocean, just being. 

The work is working. The Big Rock is slowly moving.

I still have trouble reading my words about Survivor Kid and all our family went through. We still live with the late effects of that journey every minute of every day. I read things I wrote years ago, in our life “Before Brain Tumors”, and I almost can’t believe that I wrote them.  Nothing like being at a youth group thing and realize folks are acting out a funny skit you wrote 42,000 years ago.  I used to be really sharp and funny, not just scary.   And you know what, I can work back there again. This is a first step.  Not perfect. I am trying (as always!) not to let the perfect be the enemy of the good.  Let's do this.

Big Rock has gotten mossy from sitting in one place for so long.  So let’s get moving.

Friday, May 2, 2014

Making Sense of May



So May. Here we are again. 


I am tempted, some days, to say “May” like Jerry Seinfeld used to say “Newman”, this month of double awareness.   I don’t know why some days the weight of this gets to me, that NOW WE NEED TO BE AWARE OF NF AND BRAIN TUMORS. I can’t remember the last day I was NOT aware, so, what’s with May?

Especially since so many of my friends are in both of these communities, social networking is overflowing with awareness facts, pictures, graphics, etc.  I find that inspiring, motivational, depressing, and overwhelming all at the same time.

See why it is hard for me to even pick out a paint color? I am perpetually conflicted. 

 Reading through my blog from last year, where I describe our family’s journey…ugh. I know that was an important thing to do, but it is way past “merely a flesh wound!” , if you know what I mean.   If you want to know what life is like with NF and brain tumors (and why I am scary), that’s a pretty good place to start.

But I had a thought today while running, once I got to a quiet side street where I was not just thinking “yikes, another landscape truck? Dodge! Dodge!” (meaning my action, not the truck brand).  Today is gorgeous. Spectacular. Right now it’s about 63 degrees and brilliantly sunny, the forsythia are blooming and the flowering trees are flowering, I could hear birds chirping and squirrels scratching at trees (I double checked, I had a moment of worrying that it might be a larger woodland creature, but no, just a squirrel). It was GORGEOUS.  I don’t like running, and today I really felt tired, but the beauty of the day just hugged me.



Two days ago it was 43 degrees and raining here, like Noah digging out plans for an ark kind of rain.   Roads are still closed by us due to flooding (I toyed with the idea of adding a mile to the run to go SEE the flooding, but then my body told my brain to shut up and head back home).   This winter was epic, even by the standards of the northeast, we had so much snow, my early perennials were very late this year because the gardens were buried under 2 feet of snow until March.

Youngest child & dog, walking ON TOP of 15 inches of snow. Cold. Cold cold cold.

The dark, the cold, the endless precipitation—it was a tough winter.
my viburnum after storm #493

I don’t know what May is like in other parts of the country.   But here—well, in another week or two we’ll be past the danger of frost and I can plant annuals in my flower pots.  Our yard finally needs to be mowed for the first time this year. Everything that was brown and frozen and ugh is now alive and lush and beautiful…

Not fully grown, my evening primrose are still only an inch off the ground, the butterfly bush is just getting its first green buds, the hydrangea and viburnum are just showing where their leaves will burst forth in a few weeks. By the end of May, this potential green will be realized. 
my viburnum today, buds galore!

In Jersey—and much of the northeast, I figure-- May is a month of rebirth, of everything finally emerging from winter and bringing relief and hope that summer really is around the corner.  Winter (especially this year) is so long and so hard, it makes us appreciate so much more when spring finally comes.  The air just smells good today.  The birds sound so happy (the winter was so quiet).  I am so happy that May is finally here!

I had this thought, while running, a thought that having both Brain Tumor and NF awareness in the same month is really so meaningful…because May is so much a month of hope. We’ve had terrible losses in May, terrible grief over friends we love, lost to these two awful things…but there is still hope in the midst of that…hope that our love and memory for these children and adults can fuel our work for a cure.

Brain tumors and NF are both scary frozen wastelands a lot of the time. Nothing about either is nice…BUT within the communities that have grown around these dastardly beasts there is hope and love and a sense that we are moving towards summer.  Right now we may only see potential for a cure, for treatments that work without destroying a child’s future, for understanding the cellular mysteries NF and brain tumors hold…

But just like my viburnum and my hydrangea, that potential WILL come to fruition. I really think it will—and the hope and new life and green and sunshine of May are a WAY better time to think about these awful things, to see them in the sunlight of hope. 
By August the sedum this owl is guarding will be taller than the owl.

Ok, that sounds maudlin, but I really don’t mean it that way.  If both months were in February I would have to hide under my bed.  Having May be the awareness month for both of these things that have truly changed everything about our family is in some ways a blessing.  The beauty of this month can be a hopeful lens through which to present and understand the realities of brain tumors and NF.

We appreciate the green and warm and sun so much more after the awfulness of the winter we had.  And after the awfulness of rather a lot of the last almost 10 years, I appreciate the hope that is fostered in this month of May.

Next Tuesday is MRI day. We may be basking in sunshine or once again hoping for that potential yay to find us again…I don’t know. But I am trying, fighting against my wintry self to see the hope in each day of May, instead of the painful reminders of what’s past…to see the hope.  

Live. Hope. Find a Cure.


       




Tuesday, April 22, 2014

The Story of a Wall ...or, Expectations Adjustment 101



This is the story of a wall.
It looks so non-threatening in this picture. Don't be misled. That's about 5 hours of frustration there.


Not THE Wall (although I have been known to say Hello? Hello? Is anybody in There? rather too often). 
 
Just A wall. 

Well, technically 6 walls.

Six walls with a carefully applied wallpaper border. And navy blue paint with white stars. And light blue above the carefully applied wallpaper border.

See, back in January I had Ambition. Ideas. New Year’s kind of goals.  Remember that? Ok, since one of those goals was “blog more often”, and I made that happen all of twice, this wasn’t such a long ago post. 

Ugh.

But I am STILL determined to keep chipping away.  This wall (walls) represent starting.

The room is VERY small. You would think this would speed the process along. Not so much.
 
I have used an exacto knife, a scoring tool, 2 chemical wallpaper removers, extra strength vinegar and water, a sponge, a spray bottle, a spackle knife, and an actual wallpaper scraper thingie (which despite my resistance to paying $8.39 for a plastic thingie, actually does work the best).  Me vs. the Wallpaper was not a pretty battle, and now my son’s room smells vaguely like Italian dressing or Easter eggs, even though I haven’t worked in there in two plus weeks.  I just haven’t had time with my work schedule. 
note the oozing detritus of my despair falling upon the stars. Gah.
 
BUT I STARTED.

Yes, it’s April. Yes, there is still an awful lot of glue stuck to that wall.  Yes, I need to get brillo or something to get the rest of the scunge off the rest of the wall. 

BUT I STARTED. After 2 years of wanting this to happen, I started.  And instead of being demoralized by the fact that global warming is happening faster than I am taking the baseball wallpaper down from my now college-age-son’s walls, I am trying to at least muster a feeble woohoo!  for getting started.

Admittedly, this is lame. But instead of Pinterest-y photos of all the creative huzzahs I’ve gotten done, I’m keeping it real, AND trying to not get too down for the pace of this LONG overdue project.
Also, I had to convince the dog that tiny scraps of wallpaper wafting down are NOT in fact a snack.

Adjusting my expectations is honestly an ongoing project for me in EVERY ASPECT of my life, to be honest.  Expectations are killer in so many areas.

But getting started is a win, even if it’s not “finish the now 18 months late wedding sampler” or “finally sew those old shirts into a memory quilt” or “paint something!”  or “write poetry again”.   Scraping wallpaper IS a win, because I am so often paralyzed by my expectations into doing nothing except wandering in circles. 

I do have to say, as someone who finds it hard to part with things from my children’s childhood, about 10 minutes of hacking away at the baseball players (one of whom looked weirdly like Mark McGwire, obviously BEFORE we knew he was Captain Steroids…and another who looks like A Rod…hmm)…10 minutes and my nostalgia was covered in minute particles of sticky paper and unpleasant thoughts about how Pinterest was a FAIL on telling me how to get this stuff down.

Now I have a speck of a hope that maybe, MAYBE over the next month I can actually have the room prepped (oh, the spackling I still have to do, and priming…) and THEN finally paint it some neutral clean color. Just in time for Mr. Biohazard to come home for the summer.  Sigh.

So the wall(s) are my story for today. I finally started this project that has been bothering me for 2 years. Ok, so we were a little consumed with other stuff over a lot of the last 2 years, but getting started on these walls (and thus on transforming this into a more grown up room for my son) is my win. It’s not pretty, it’s not creative, but it’s the win I have.

Now if I could just get things together enough to wash my rugs…stay tuned for THAT exciting post. ;)

(and note of disclosure, even THIS post was written for a week before I managed to upload the picture of said wall...ergh)


Thursday, March 27, 2014

Of Olympic Sweaters , Tutus, and Running


So while the first 2 blogs back were written with energetic new year enthusiasm, this one was more like pushing an air conditioner up 3 flights of stairs. You know you have to, but oh, it is so heavy. This has been written for more than 7 weeks…but today I needed to revise and publish in light of Self Magazine mocking a brain cancer survivor in progress for running in a tutu, placing tutu wearers on a “BS Meter” as perpetrators of a “lame fad” .   Yes. I needed to revise & publish today.

Did you see the official US Olympic opening ceremony uniforms? Way back in February...did you see them?

They are all the greatest kitschy moments of early 80s nouveau country patriotic chic rolled up into one Flagtastic knit celebration of a sweater.  If they had a faux Amish child or a goose with a slate blue bonnet, they would be an absolute time capsule.

They are awfully awesome.
Everytime I think about them, I chuckle.

And you know, as much as I chuckle about them, even now, nearly 2 months after the opening ceremonies, I see Ralph Lauren might be a genius.  As every other country came in to the Sochi arena in variations on svelte athletic clothing ala a Nike showroom, the US contingent came bounding in with jubilant energy, making a Great Entrance in that Fandango of Flagtastic Fabulosity.  There was NO mistaking who the US athletes were.

Admittedly, I kind of like weird clothing. For someone who wears black yoga pants and a plain fleece of some sort most of the time (or conservative and serious teacher clothes), this might seem improbable. But I find funny clothes weirdly empowering.

When I ran my first half marathon (and second and third), I had to wear the argyle skirt, and a blingtastic headband. And armwarmers that say “If Found On Ground, Please Drag Across Finish Line” .  
I might not be fast, but my clothes are FESTIVE.  Same thing for the Turkey Trot this year, I wore a Turkey on my head. Santa 5K? A bedazzled t-shirt and a Santa hat.  Had to do a last minute number at our Coffeehouse last year? I pulled out an Uncle Sam hat and I was good to go.

And you know, these silly outfits make people happy, which is contagious. Happy strangers yelling, “HEY, great skirt!” as you shuffle by, or “Love the turkey!” as you sip from a plastic cup at a water station…well, it just makes me smile (and in the case of running, forget just how unpleasant running often is).



In hindsight, I think Ralph Lauren secretly knows this Power of the Somewhat Amusing Outfit. Make your competitors laugh so hard that you get a head start? ;)  Of course, when the Amusing Outfit is used to represent your country, and worn by like, 400 athletes next to you,  that makes a STATEMENT, but…those sweaters (and their matching hats) are so awfully awesome.  I am REALLY hoping one ends up on clearance somewhere. $595 is just too much.

There is something very freeing and empowering about Committing to Silly Outfits.

I have only just started to be open to this kind of commitment in real life.  Ok, so a LONG time ago I had an embroidered Alice in Wonderland Disney shirt I wore a lot .  And I did wear a paper American flag in my jacket lapel for years. And ok, so I wear a Squid of Power named Sassafras and a small silver elephant named Rodney.  And I do love things with crazy patterns, when I’m not wearing variations on black.  I get you, Ralph!

And after seeing the brouhaha which erupted today after Self magazine mocked runner Monika Allen for wearing a tutu in the LA marathon…  (read the story here)I am realizing more why silly clothes matter.

Self has kind of apologized. Ish. Mostly because Monika is a cancer survivor in progress, she ran that marathon in that “froufrou” (Self) tutu WHILE ON CHEMOTHERAPY. And she makes those tutus for Glam Runner  www.glam-runner.com, to raise money for Girls on the Run, a group dedicated to getting 8-13 year old girls out and running and making healthy choices.  The editors of Self (helped by the viral ire of facebook and the interwebs) have sort of realized that maybe they were jerks.

But they don’t seem to understand that their jerkiness goes WAY beyond the fact that this mighty lady in the Wonder Woman shirt and tutu is a cancer patient and works tirelessly for young women.  By snarkily commenting that the tutu wearing runners are part of some BS lame “fad”, the writers at Self place themselves firmly in the middle school shallow hierarchy of Cool As Defined by Someone’s Narrow Version of What You Should Wear, or how you should look, or how you need to present yourself to be able to participate fully in life.

THAT is what they should be apologizing for.

I just spent several days substituting in middle school.  Trust me, the shallow hierarchy of cool really should Stay in Middle School…as I beat a hasty retreat back to high school. Phew!

See, I’m a little sensitive because I carried my lowly place on the hierarchy of cool with me for a long, long time.  Let’s just say that a gangly, weird haired, glasses wearing, uber Caucasian, freckly gal who likes musical theater and sci fi didn’t quite have a place on the ladder, if you know what I mean.   And people were not afraid to let me know that I looked like a nerd. For years I let my insecurities about my appearance have way too much of a hold on my brain. 

For a long time those insecurities kept me from trying to run. When I did start running (as a 37 year old!), I ran on a field where no one would really see me….in long baggy capris and a big t-shirt, trying to camouflage my out of shape-ness.  It took a long time (and some helpful reading) for me to realize just by TRYING to run I am a runner. What I look like is irrelevant; on race day real runners (ie anyone at the start line!) don’t care. Nobody cares how you look! 

Freedom!

But  sometimes, occasionally, that lying beast of ugly rears its head again.

I’ve always had more clothing hang ups than your average telemarketer gets during an 8 hour shift.   
1.      Until I was WELL into my 20s I would not wear sleeveless shirts, because my arms were so white, and freakishly long.
2.      I wouldn’t wear flip flops or sandals because my toes were weird.
3.      No yellow, I look like a dead fish.
4.      I thought I was an extra large until I was about 25… clothing I bought as a freshman in college I wore just before giving birth to my first child.  (I’m not teeny, but XL was camouflage, plain and simple).
5.      EVERYTHING I wore had to match match match. Perfectly. Like, socks, underwear, pjs…perfect match, or I’d be really uncomfortable.
6.      Yes, I was insane. And I wonder why my kids are so OCD?

This all made SO MUCH SENSE back then. But really, it was just about fear, somehow. Control. Controlling how people saw me. Being invisible or something. Whatever. It’s ancient history.  But not so far off from what Self magazine implied in mocking women who wear tutus to run.  We need to squelch joy. Real athletes don’t wear tutus.  Lame. BS. Snarkysnarkfest.

Again, MY BS Meter is going crazy.  Get me a tutu, QUICK!!

I’m glad to say I got over the sleeveless thing, I’m uber-Caucasian, so what? And eventually the sandals thing (I remember my first pair of sandals, I was so nervous about wearing them, and they were fisherman style, my toes were still invisible).  Now flip flops are my friend ALL summer, and I LOVE sandals.  
I even bought a gold sweater last year. I still probably can’t wear true yellow super well, but I might try, why the heck not?  And I try to wear things in the size that fits, whatever that letter or number may be.  Insane-o-matchy? Done. It’s too much energy.  I consider a day a win if I remember to wear matching shoes. Like, shoes that Match Each Other.

one needs a feathered headband for chemo day (2013)
Funny, too, because my second born loves sequins, animal print, neon…all fashion that screams HERE I AM!!! I think some of this is due to her visual impairment (she can see this stuff), but some is because she has ZERO hang ups about clothes. She does a happy dance any time she finds an outrageous piece of clothing to wear.   I can only get her to try ANY athletic thing by promising blingtastic fashion.  Win!

I feel like Ralph Lauren would appreciate my G’s enthusiasm for color and pattern, even if he cringed a little at her penchant for neon.  She is always true to her own aesthetic, never caring a blip about what others think.  But based on Monika Allen’s experience, I know Self magazine would not approve of G’s ebullient style. And THAT is what they need to apologize for—for limiting women. For saying we win a space on the BS Meter for NOT meeting Self’s  narrow definition of what athletes are supposed to look like. 

Real runners know that it’s NOT what you look like…it’s what you DO that makes you a runner. One foot in front of the other…you  ARE a runner. Walk breaks? Still a runner. Cramps and have to stop? YOU ARE A RUNNER.   

Mile 9, finally heading back to Philly...Rock n Roll Half Marathon 2013.
And I never put up pictures of myself. But today, I am.
Note my festive skirt. And it does make me go faster, Self Magazine. Each year I've worn it
I've shaved 2 minutes off my time--and I'm not getting any younger. snapSNAP.


Your outfit does not make you an athlete. Heck, I wore track pants for years before I ever exercised. I felt very legit as I sat on my couch. J 

And really, running is one of the most inclusive sports out there. All you have to do is show up and move. Fast or slow. Just show up and try to keep moving. Nothing else matters.  You CAN do it. Shame on Self magazine for taking a moment of celebration and mocking it because it's not how the "cool" runners dress. Kudos to Ralph Lauren for celebrating the fun and humor and joy of athletic achievement. If the greatest athletes in our country can rock out in Flagitudinous Fashion, why the heck can’t we everyday women trying to run rock a tutu?

So I will be procuring a tutu for my next race (yes, I can’t help myself, I know I’ll sign up again), I will speak out in support of the Glam Runner ladies and their awesome efforts to help girls have a truly authentic healthy self, and I will keep looking for those Olympic sweaters & hats on clearance at TJ Maxx.   Heck,  I kind of hope I’m NEVER on the hierarchy of cool, if cool is defined as bland conformity.  Bring out the sparkles and the super hero t-shirts, and let’s run on!


**As a side note, the Tutu Wearing Guy we used to see in Philly tended to finish the race in 1:30.  If that's not legit, I don't know what is. So guys, you can wear tutus, too. :)


Wednesday, February 5, 2014

Another Perspective


Another perspective.

So…I have to blog something that I know people will disagree with. I have to, because I teach my 12th 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.