Our Perpetual May

May is Neurofibromatosis Month.

May is also Brain Tumor awareness month.

I suppose May is an official month for lots of other things, too. It’s the month I was born, it’s the month of first communions and graduations and dance recitals and the official insanity of things running down before the respite of summer.

But in our house, the dual NF/Brain Tumor awarenesses become all –encompassing in May.

Spreading awareness for us means helping people KNOW about NF & brain tumors, begin to glimpse the reality of what LIVING with these two things can mean, and then hopefully help us push forward research for a cure.

Thanks to the officialness of the Children’s Tumor Foundation website, www.ctf.org , I can tell you through the magic of paraphrasing that Neurofibromatosis (NF) is a genetic neurological disorder which affects more than 2 million people worldwide. It can be classified into 3 distinct types, NF1, NF2 and schwannomatosis. They are caused by different genes on different chromosomes. NF1 is the most common neurological disorder caused by a single gene; occuring in one in every 3,000 children born. NF can be inherited from a parent who has NF or may be the result of a new or "spontaneous mutation". Parents with NF have a 50% chance of passing the disorder on to their children. Children who inherit NF from their parents get the same TYPE of NF, but the severity of the disorder can vary wildly within a family. NF doesn’t discriminate based on gender, race, geography, or anything. NF is totally egalitarian about who it smites. CTF’s website asserts that “Although most cases of NF1 are mild to moderate, NF1 can lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumors; loss of limbs; malignancies; and learning disabilities. NF1 also has a connection to developmental problems, especially learning disabilities, which are five times more common in the NF1 population than in the general population.”

If you made it through that entire paragraph without breaking out in hives, CONGRATS.

How did I know this BEFORE www.ctf.org even existed?

Well, in 1993, at the end of a very nice date with my boyfriend, Dave, he stood at the end of my walkway and kind of cleared his throat. We were pretty serious at that point, and thoughts of the future had crossed both our minds, I guessed. He pulled a pamphlet out of his pocket, and said, “um, I have this thing, it’s called NF…”

Well, then. Some gals get a good-night kiss to end a date, I got a medical pamphlet.

Ok, that’s not fully accurate, I am sure there was a good-night kiss, too. We were young then, you know. Ahem.

I read the pamphlet, and felt concerned and a bit confused, but I was in love, and sooooo young, and I knew that if I ever had a child who was blind because of NF (which the pamphlet told me could happen, even though Dave was fine, he just had some bumps on his skin, but whatever,), I would go all Annie Sullivan and teach the child Braille and we would Triumph Over Adversity.

Yes. I always choose melodrama. I could almost hear the inspirational music. But Dave was perfectly healthy, so the inspirational music and corresponding adversity were mostly theoretical.

Brain tumors, well, I was aware of those too, one of my classmates lost her mom to a brain tumor when we were in eighth grade, I only remember her mom near the end, on steroids and chemo and unable to really talk to us much when we brought a meal or something to their house…and I remember the day things got really bad and my classmate got called out of class, and we all knew, we just knew…

Pediatric brain tumors I knew nothing about. Low grade brain tumors, even less, although I knew my sister’s allergy doctor had had a brain tumor for years and years. . . I’m guessing now that that was a low grade tumor.

He still died.

There are many, many different types of pediatric brain tumors, in different parts of the brain, comprised of different types of cells. Some tumors are highly malignant and deadly, some are malignant but potentially beatable. Some tumors are slow growing, so called “benign” tumors because they tend not to metastasize to other parts of the body. The treatments for brain tumors include surgery, chemotherapy, and radiation, depending on the type of tumor, the location of tumor, and the age of the child. Scientists keep learning more and more about hidden variations within even pathologically similar types of tumors, variations that hopefully can be targeted in developing therapies.

Brain tumors and the treatments to cure them (oh, double edged sword!) can cause motor, speech, and cognitive difficulties, vision and hearing impairments, paralysis, and death. Brain tumors are horrible, dastardly beasts, low grade or high grade, brain tumors are horrible, dastardly beasts. And while many brain tumors are random acts of cellular yikes, brought on by no act of the afflicted, some brain tumors are caused by underlying conditions like tuberous sclerosis or… wait for it… Neurofibromatosis.

The brain tumors caused by NF tend to be low grade brain tumors—such as optic glioma, those tumors that can blind a child--which again simply means they grow slowly.

According to the Children’s Brain Tumor Foundation, www.cbtf.org (yes, the two addresses are weirdly close, I know) , 11 families each day find out their child has a brain or spinal cord tumor.

On two separate days, with two of my children, my family was one of those 11.

Twice.

Because of NF.

So May means a lot to our family, not that we are unaware the other 11 months of the year (I wish!), but in this month our NF and BT awareness reach epic overloading proportions. And this year, in an attempt to clear my own mind or make sense of the nonsensical or something, I am going to try and tell some version of our story, our family journey through NF and brain tumors, our never-ending May.

I don’t know, honestly, if I can manage it. We hit the 9 year mark this coming August, so I have a LOT of years to cover in 31 days, and I am committed to NOT writing too much more than 800 words or so each day. (stop laughing, really, I’m going to try. I know, I’m at 1300 on this one already, FAIL). MRI day is in less than a week, so…yeah. I don’t know. There is so much, so much to this journey. I don’t even know if it’s helpful for people to know. . .

But NF is so common. And treatments for low grade brain tumors (including the kinds caused by NF) haven’t much changed in decades.

DECADES.

So for May, I hope to spread a little NF 1 awareness (the variant our family has, the more common variant), a little low grade brain tumor awareness, and maybe a little hope. Because even though much of our story is really hard, really, really hard. . . we do have hope.

May is NF awareness month—and brain tumor awareness month. And I know that low grade tumors are only a subset of the pediatric brain tumor world, which is a subset of the larger brain tumor community. So I apologize for the limited scope of what I can say. For a long time I wasn’t sure we even really should have a voice about brain tumors, because my kid only had low grade tumors. That almost wasn’t sick, right?

Sigh. I don’t think that anymore.

I hope this story serves some purpose. I hope the struggles we've had can help other people who are struggling, too. I hope people understand more about these dual disasters by the end of May. And I hope that people feel some hope at the end of it all.



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

For a really amazing and heartwrenching account of a family’s journey through a high grade brain tumor diagnosis, please, please read Donna’s Story, over on the Mary Tyler Mom blog, written for September, Pediatric Cancer Awareness Month. Donna's Cancer Story

Don’t read it all in one sitting. Don’t . Really. Just don’t. But do read the whole thing. It’s so important that Donna’s story be heard. And thanks to Mary Tyler Mom for inspiring this attempt at telling our story. You don’t even know me, but you are one of my heroes.

Itsy Bitsy Teeny Weeny Yellow Polka Dot Bikini...

If by "itsy bitsy" you mean "providing respectable coverage" and by "teeny weeny" you mean "well fitting" and by "yellow polka dot" you mean "pink and blue with tropical flowers", and if by "bikini" you mean "tankini", then Yes. Exactly that.

You know, Dante forgot a few circles of hell.


Over the years I have compiled an ever growing list of the circles Dante forgot, including (but not limited to)

*Kenny G albums

*dental work of any kind

*stomach bug with kids too little to understand “mommy is not a bucket, hug me later, HUG me LATER!!!”

*bugs with legs in multiples of 8

*the “singing” of Britney Spears

*snowy days at school when it’s snowy enough to make the students berserk but NOT snowy enough that you get to stay home.

*gas station bathrooms

*bathing suit shopping

Ok, so bathing suit shopping should maybe be first on the list.

My husband can look in a catalog, see a colorful bathing suit that just looks like a pair of shorts, and order them. For me…sigh. Circle of Hell.



As a teen, my uber-Caucasian-ness made bathing suits of any kind a nightmare, because there is nothing more persistent or mortifying than the clamor of other teens marveling at how white you are. Well, I’m sure there are more mortifying things (I can think of a few, also involving bathing suits), but this was the daily ugh. When you are really, really , REALLY white, people remind you of it. Constantly. Derisively.

Really, WHO CARES? But as a 15 year old…I really, really did.

Now, post-3-kids, bathing suit shopping is no more fun. The uber-Caucasian thing, I don’t much care about. The inexorable progress of gravity on my maternal physique is a little harder to stomach (literally) while bathing suit shopping. Even though the number on the scale is the same as it was pre-kids, everything has king of just settled into a Giza like shape. Too bad they don’t make limestone-styled bathing suits, I could be a wonder of the world.

Anyway, a few weeks back I had to take my teen daughter bathing suit shopping. This was our first time not just ordering something from Lands End. Eek.

I prepared her for the potential of mental and emotional turmoil that can ensue when Nothing Is Quite Right, bathing suit wise. I told her we’d likely have to try on a lot of things. We might not find anything, that is OK! Every girl has trouble finding a bathing suit.

She was SO excited to get to the bathing suit section of the store…she is old enough to have to look in the grown up section, but very, very short. I knew we’d be in for a challenge, especially since her shape is not quite as curvaceous as most grown-up bathing suits allow for, if you know what I mean.

She raced from suit to suit, picking up impossible things (stay away from the D, sister!), bopping around happily.

The first suit on: She was posing, smiling, loving every second (especially since there was WAY too much structure in one portion of the suit, we were veering into alarming airfilled Dolly Partonesque territory—I told her Daddy would have cardiac arrest if she came home in that suit). Suit after suit, she giggled and posed and had a blast.

SHE HAD FUN TRYING ON BATHING SUITS!

Yes, she had to try on about a dozen suits, then re-try a few and then we made some decisions…she wasn’t bothered in the least when I said some things just didn’t look right, she just barreled on to the next choice.

”I Look FAB-ulous!” she sang at me, posing in a hot pink floral tankini covered in big flowers…

And I stopped, lycra skirt in hand, and told her to hold onto that her entire life. Hold onto that fabulous, that confident sense of “I am awesome in my 4’10” “curvy” self!” Hold onto that joy, that silliness, that laughing at when things don’t look quite right. HOLD ONTO IT!

She just struck another supermodel pose and giggled.

What a gift. If only she could bottle that and give it to other teens…heck, give it to her little sister, who seems to be a lot more like momma in the confidence department (ie out of stock, generally).

So this week, I learned that maybe my circles of hell are NOT my child’s. Maybe girls CAN celebrate themselves on their own terms, not the terms dictated to them in teen fashion magazines.

Maybe bathing suit shopping isn’t so bad after all…

But I’m still going to try to order from Lands End and avoid the dressing room altogether. ;)

I'm Not Really a Nutritionist, I Just Play One On TV

So double MRI month, big fundraiser, and National History Day all happening in a 4 week period = no blogs from me. Everything I came up with was either a giant Yawn…literally, I have not been sleeping well, it was just the word “Yawn”  in a variety of fonts and colors or A Desperate Ululation about The Reality Smackdown that Feb/Mar have been.

I just couldn’t do that to either of the blog followers. ;)

But then I heard the Big News: Gwyneth Paltrow is writing a cookbook. 

I know, I know, she doesn’t look like she eats, but she is writing a cookbook all about the particular “uber-healthy” diet plan she uses for her children.  In some of the publicity over this, Ms. Paltrow is quoted as saying her children sometimes have the “specific hunger” that comes with Ms. Paltrow deciding that they should have no carbs.

Now, admittedly, I am not going to read her book, so I really shouldn’t comment on its content (but I do appreciate that in America, and with the resources my family is blest to have, my kids don’t have to be hungry).  And yes, I have never been a fan, pretty much because I was so irked on a date with my spouse shortly after the birth of our first born to see a Gwyneth Paltrow movie in which it seemed like her primary role was to take off her shirt whenever possible so she could frolic about with a main character who happened to be married to someone else who had just had twins. It just seemed gratuitous and icky and unfair to the invisible wife WHO HAD JUST POPPED OUT NOT ONE BUT TWO BABIES and  it just skewed my perspective of her forever.

 And she named her kid after a fruit, which is also, nutritionally, a carb, right? In a South Beach kind of way…

 As a parallel disclaimer about health/dietary advice, I didn’t start exercising until I was 37, and I have a ridiculously high metabolism and epically good cholesterol levels and generally good health due to zero effort on my part.  I love healthy food and junk food, everything from fried chicken and baby carrots.  Cadbury Eggs are almost a vocational choice for me.  I thought when I hit grown up age this would become a problem, but so far it hasn’t.  I have no clue WHY this is the case, I have done zip to merit this grace, but since I have so much drama in every OTHER area of my life, I am super grateful for this pile o’ blessing that allows me to eat cake for breakfast.   

And as much as I loudly advocate cake for breakfast, I do feed my family in a pretty healthy way.  But I have cake whenever possible. ;)

ANYWAY,  even if I was a Ms. Paltrow fan, I’m not sure I’d follow her advice in her self-appointed role as nutrition expert, and not just because if I wrote a cookbook it would be called “Cookies for Breakfast, Lunch, and Dinner” or “Hey Mom, are We Foraging Tonight?” .  

Sharing recipes = awesome.

Sharing experiences = valuable.

Sharing Your Version of Medical Advice As Authoritative because you are famous and therefore somehow an expert simply by merit of celebrity? = um, no.

I’m not sure if it’s just because Americans are SO enamored with the cult of celebrity, or we have lost any skepticism in the face of overwhelming piles of information at every turn, but taking medical advice from celebrities just seems silly.  Celebrities USING their celebrity to market medical advice seems . . . icky.

I think THAT is what bugs people…that Ms. Paltrow sees herself as an expert, kind of like Dennis Rodman seeing himself as our best diplomatic hope for dealing with a trigger happy North Korea. Hm.

I’m sure Ms. Paltrow means well.   I really don’t have anything against her (except Shakespeare in Love).  I just don’t think taking on the character of “Health Expert” is quite the same as taking on the role of Shakespeare’s oft-topless muse .  Sharing her experiences of not-feeding her kids? Ok. Sharing recipes for the things she does let them eat? Ok.  Promoting it as an Authoritative Health Choice for all --ergo the subject of a book people should buy…um, no.

I honestly don’t care what she tells her kids not to eat or to eat. It has zero influence on what I tell my kids.  We had a night a week ago where the ONLY thing that tasted good to my kid post-chemo was chicken nuggets, which I never buy but had gotten with a coupon to have “just in case”…I think that was a Holy Spirit Moment.

No, really. Watch a kid lie on a chair for hours and hours, refusing to eat for an entire day because she feels so yucky,and then find something that You Never Buy but Happen to Have THAT DAY and it magically tastes good to them …THAT is a Holy Spirit Moment.

My thought is simply that it is silly times 100 to put ANY medical faith in a celebrity simply because she is a celebrity, or good looking, or even sincere.  Show me the science…and the respect that even with science, humans are so insanely variable that what is best for your family might not be best for mine, in terms of diet or whatever. 

I think that’s why people get worked up about this kind of moment…not because anyone really cares what Gwyneth will or will not eat (although people seem mostly to be upset with the idea that she is making her kids hungry. I have no comment on that).   It’s more that Gwyneth feels like we SHOULD care, and should fork over $14.95 or whatever her book costs to find out WHAT she thinks/advises/does.  

She certainly is not the only celebrity to USE her celebrity to market her ideas as Things People Should Do. Oprah was the QUEEN of this, really. Oprah is almost more of a voice of truth for people than Wikipedia.

#cough.

And I edited the next part. Really. It's my new Lent thing, trying to not be scary all the time.  Ok, some of the time. Ok, occasionally. OK, at least one time during Lent. sheesh.

Really, the responsibility for this Celebrity Expert-itis is only partly on Ms. Paltrow, and partly on the folks who give her expertise credibility—those who buy not just the book, but the life choice BECAUSE it’s hers (and not because they came to a parallel choice on their own).  The publishers have some responsibility too, knowing they can market ANYTHING with a celebrity name on it (Madonna’s children’s book series? Anyone? Ugh) . 

I once had someone who works in a medical industry use Jenny McCarthy as a source for this person’s opinion that parents should not procure a particular type of medical care for their children.  Not actual immunologists or epidemiologists.  Not any kind of person ending in "ologist" . Not pediatricians.  Not scientific studies published in PubMed, or Medscape (both medical journals) or the Lancet (a British medical journal), but Jenny McCarthy. You know, Playboy model? (ok, hopefully you don’t know that).  Actress from cerebral films like Scary Movie 3?  Yes.  THAT was this medical entrepreneur’s main source for emphatically telling his clients to NOT procure a particular form of historically and scientifically substantiated type of preventive care.  Another gal who took off her shirt (and more) for money was the main source for the potentially catastrophic advice.

Hey… maybe there actually ARE articles in Playboy, like medical articles or something, I thought that was something guys just said. Ew. Ew ew ew.

And having just graded a History Day project full of pictures of children suffering with a disease that can now be prevented by Jenny’s No-Go Procedure, if parents so choose, I find the embrace of ( in this case) B-List Celebrity as Doctor to be verging on wildly unethical.

Ms. Paltrow is certainly not in this line of medical yikes.  Telling people “I’m famous, so don't give your kids a muffin”  isn’t the same as saying “I’m famous, and here’s my manifesto on why you should put your child’s life—and other innocent people’s lives-- in jeopardy!”  But seeing her book as more than a potentially entertaining read seems ill-advised.

I guess my point is, everyone has to figure out the best kind of food moments  and health choices for their kids, and Gwyneth Paltrow is certainly entitled to make a few bucks on her published version of how she thinks people should eat.  But please, let’s critically acknowledge the credentials of any source:  actresses are good at telling stories and creating characters; musicians are skilled at making beautiful music; doctors are good at fighting illness and taking care of people; Clinton & Stacy are good at telling us What Not To Wear…. 

And we have to make sure that WE search out the truth about things that impact our family life, health, and happiness.  And check our sources, ALWAYS check the sources!  (I have been grading annotated bibliographies all day. CHECK YOUR SOURCES!!)  You might be surprised at what you find…

And then we can make our own, educated, celebrity-free  choices about what’s best for our family.  I for one don’t really need Gwyneth Paltrow to do that for me, especially because I don’t think she’d support my Cadbury mini-egg addiction. But since mini-eggs are likely on the no-eat list for her kids, that means more for me.  

Winning!

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!

Right?

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…

Heheheheh.



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

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. ;)

"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.

SAY WHAT, WILLIS??
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 active...it'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...

Broken but Unbowed

Humpty Dumpty Sat on a Wall
Humpty Dumpty had a great fall.

All the king’s horses and all the king’s men

Couldn’t put Humpty Dumpty back together again.



But really, would you ask a horse to fix something you broke? Does that seem reasonable in any set of circumstances? I mean, they don’t even have fingers, just hooves.

Pondering broken things today.

I don’t like broken things. Who does? Well, with the exception of piñatas. Those are more fun broken…although an argument could be made that piñatas are even nicer when they are intact, all colorful and papery and full of the promise of delights. Sometimes when you break one you realize that there’s only a bargain candy mix inside, full of generic brand hard candy and stale tootsie rolls. Ew.

This week we’ve faced a few broken things here, some big, some small, and I’m left wondering how one fixes the unfixable—or really, how do you make peace with the unfixable?

This isn’t really a rhetorical question.

In taking down our Christmas tree, one of my favorite ornaments got broken, the only real ornament disaster we had this year, aside from the $1 craft store sculpey Santa that the dog ate…and the Rutgers R I had made for my spouse one year (also eaten by the dog) . The ornament that broke was a Chilean nativity, a tiny clay ornament that crashed down when one of my children barreled past the tree while we were un-Christmasafying things.

yeah, no roof for His head is right. Meh.

 

Of course I peacefully said, “that is ok, child, do not worry about breaking one of mommy’s very special nativity collection ornaments”. Of course that is what I said.

Excuse me one moment while I find a fire extinguisher to put out my flaming trousers. Ahem.

I know I can probably super glue it. Maybe. I will try, but it makes me so sad to see the little pieces all over. Definitely NOT calling a king’s horse for this one.

Over the last few weeks and months I have also realized (again) that trust, once broken, is nearly impossible to repair, especially if the breaker of trust doesn’t seem to give a flying wahoozie about making amends. This weighs quite heavily on me these days, because in some cases this realization carries a weight of personal responsibility on its broken back. I can’t quite figure out how to make peace with this—as much as I am a snarky cynic, I do trust people, or I want to, and then smackaroni and cheese ends up all over my trusting expectations. Sigh.

And when I have a responsibility for the way someone knows how to act, it is heartbreaking when trust is broken and broken and broken again and again. How do you even begin to make peace with what you cannot fix?

And finally, in our scary horror film parallel universe, the Desperate Valley of Onco-land, we learned again this week that brain tumors cause damage. NEWSFLASH! Ok, to clarify, when tumors grow catastrophically after years of stability, they can still find new parts of the brain to hurt. Still…NEWSFLASH?



When you are in crisis mode, ie Stop the Tumors From Growing! mode, other issues kind of fade to the background. It is only in the relative quiet of stability-in-progress that these issues have room to hiss at us.

Many parts of the brain, once broken, can’t be fixed.

This is a sobering reality, one that sinks in during the hours AFTER the initial meetings full of reports and bell curves and diagrams and percentiles and doctors soberly saying things like "this can't really be compensated for", meetings that follow other meetings where the delicate balance of brain chemistry is always at the forefront of discussion.


The report is intimidating even before it comes out of the envelope. Double meh.

There are strategies, and techniques, and certain things that can help address the broken parts, but some things just can’t be compensated for--as per sober doctor in super cool tweed suit.

That thud you heard was me getting smacked upside the head by reality.

So yes, this is unfixable—but countering that reality in a cloud of neon animal print and an obsession with American Idol is the reality of a kid who is, without a doubt, “one tough cookie”. She isn’t defined by statistics or percentiles or reports or even by my fears. She is the fix to  her own unfixable, in a lot of ways.

The obstacles are real. The struggles ahead, no joke. But I have to try and draw some hope from the reality that my kid IS a tough cookie. She doesn’t need kings and their horses or men to get her through—what she NEEDS, I can try to give her (or advocate--er, nag, demand-- for other people to give her)—love, support, and some extra heavy duty reinforced wings for flying.

I may not be able to keep her from falling and falling as she tries to stay on the wall with her peers…but I can keep helping her back up, I can make the wall sturdier and wider. So much of what she faces is unfixable, and I have to make peace with that (again. Yes, again.) But unlike broken trust, or even a broken ornament, the unfixable here just leads to another path. We just have to figure out what that path is, what the best way is, and then try to ease on down the road with a song and some super glue.

Who knows, maybe once the king’s horses and men realized they couldn’t put Humpty Dumpty back together they just made a giant omelet or something. There is always a solution, even if it’s not the one anybody anticipated. I have to find hope in this.

Although now I’m a little bit craving an omelet…