Thursday, July 20, 2017

Turkey Talk

I don’t want it to seem like we’ve been wandering completely alone in the wilderness because that wouldn’t be fair to the wonderful teachers and therapists that have been walking along side us for the last 2 years.  They have all recognized the Thing that is there, but none of us have felt particularly equipped to deal with it.  It doesn’t help that SPD is relatively unknown and poorly understood.  Most friends and family have no idea what I’m talking about when I say it’s something we are dealing with (though many have since become quite educated, a real testament to their love for Becca); every doctor I’ve talked to – and you bet there have been a bunch of them – says something along the lines of “yeah, there’s something to it, but….”  The American Academy of Pediatrics doesn’t recognize it as a distinct disorder and the ICD-10, the international log of diagnoses, does not include it.  Consequently, insurers do not cover it.  And treatment of any kind, as you certainly know, is expensive.  Treatment that insurance won’t cover is painfully expensive – so much so that you find yourself wondering if it is a luxury you can afford.

So you start to read.  A lot.  You begin to recognize those behaviors you see every day in the descriptions provided by experts in the field.  You start to understand that the Thing is real and that there are tools to tame it – but they are hard to find and it’s difficult to know if you’re using the right one.  Eventually, you realize that this is not a DIY sort of project.  You absolutely need an expert.
It was while reading Sensational Kids that I first learned about the STAR Institute in Denver.  The author of the book, Dr. Lucy Jane Miller, is also the founder of STAR and a leading researcher in the field.  Her descriptions of their treatment philosophy and family-centered approach to intervention felt like a lighthouse cutting through the SPD’s unrelenting vapor.  The more I read the more convinced I became that this is what Becca needed – or really, what Rob and I needed – to finally equip us to navigate through the fog.
But it was in Denver.  And with two jobs, three kids, and deep roots in Indiana, Denver may as well have been Timbuktu as far as I was concerned.  Because of the sheer distance and practicalities of relocating all of our lives, not to mention the overwhelming expense, I dismissed the dream to pursue this kind of treatment.  It just wasn’t realistic for us.
And then one day after Becca’s visit with her OT, Jamie, I mentioned that I was reading the book she had recommended to me.  And I had decided (ha ha, wink wink) that we needed to take Becca to STAR. 
And Jamie looked me dead in the eye and said “I think you should.”
So that was that.  Rob really didn’t take much convincing; there is literally nothing the man won’t do for his family, most especially his children.  I mentioned to my manager that I had found out about this program, and would it even be possible for me to take leave for a month?  (It would.)  I read more, stalked the STAR website, floated the idea past family and friends and finally screwed up the courage to fill out the intake form.
We were in.
* * * * * *
To say “we were in” is a gross simplification of a long and often times frustrating process of getting from There to Here.  To retell every obstacle would be tedious and pointless and, worse, might discourage someone else out there from pursuing a seemingly overwhelming goal - but trust me when I say that life threw us plenty of curveballs along the way and I lost hope more than once that we would get here.
But we did, and while the therapists and researchers are a dedicated crew, passionate about helping children and adults with a misunderstood disorder while at the same time advancing research to help the greater medical community accept and identify it….  They still have to be paid. And daily treatment sessions, uncovered by insurance, becomes very expensive very quickly.
When I first started writing this post the debate about our government's plans for healthcare was a particularly hot topic; I suppose it still is.  And while I certainly have opinions about that, it wouldn't be honest to hold Becca up as an example of one of the tens of thousands of children with complex medical conditions who rely on Medicaid to support their medical expenses.  She's not - although by now you've realized that Becca's ongoing treatment costs are significant.  We easily meet our annual family deductible (and it's higher than ever) within the first couple of months of the year.  So before we've even stopped shoveling the snow our family has paid out thousands of dollars in treatment costs, with thousands of dollars still to come as the year wears on.  And we will do it for as long as it takes because this is what she needs.
Now add to this the cost of an out-of-network program, one that insurance wouldn't pay for anyway because the nature of the treatment is to address her "developmental delays," something our insurance plan very explicitly excludes.  And this program also integrates parent education and counseling - something no insurance provider would ever cover, never mind that it is an essential piece to any treatment model. 
So the costs, at least for our very middle class family of five, are overwhelming.
I don't share this because I want anyone to feel sorry for us.  The fact is that my family has insurance - though admittedly, for our circumstances, it's not ideal - and we have the margin to make sacrifices to get our daughter what she needs.  She is also lucky enough to have a parent who works "in the biz," isn't afraid to ask questions and is in a position to ask for a few favors when necessary.  (I have picked the brains of a LOT of professionals, let's put it that way.)  The vast majority of families are not in this same situation.  It breaks my heart that they cannot make the same choices that we have made.
STAR is expensive: several thousands of dollars for 20 days of evaluations and treatment; add to that half as much again to cover travel, lodging, and food and this month-long investment hovers somewhere around $10,000, give or take.  And we, uh, don't just have $10,000 stashed in our piggy banks.  In fact the cost alone was one of those obstacles that I thought would keep us from ever getting here.  But this has proven to be another blessing of sorts, if we choose to look at it that way (and we do), because it forced us to become creative and diligent in our approach toward paying for it all. 
Countless hours of Googling, stubborn determination, a whole bunch of persuasive writing and most certainly a healthy dose of good luck resulted in us securing grant funds that covered over 75% of STAR's program costs.  Two different foundations have provided the bulk of the funding for Becca's evaluation and treatment at STAR, and when I stop to think about that it is overwhelming: perfect strangers reviewed our requests and decided that she was worth the investment. And let me tell you, they are right.

(photo submitted with applications because....  come on)
 
Grant writing wasn't new to me, and I've always enjoyed it. I mean I get to use all the words, tell a story, and hopefully win over new believers to help support a great cause.  Going through this process has only reinforced my belief that it's a path I need to continue to pursue.  There are so many places out there that want to help kids like Becca and I feel more committed than ever to helping great organizations find the funders that want to support them.  So thanks again, Becca - you've helped your mama find her way in this world. 
The least I can do is help you find yours. 
(yes, she can.)
 
 * * * * * *
If you have, or know of a child with overwhelming healthcare expenses these are two foundations that may be able to provide supports.  We cannot begin to thank them enough for their investment in our sweet Bex.  And if you have questions about how or where to begin with your own search for funding please let me know.  I'd love to help.

Monday, July 17, 2017

Fast Forward


Becca’s well child visits were pretty routine.  She looks great!  She’s growing nicely!  She’s gorgeous!  You know – the usual.  At about the 4th month the doctor wanted us to start ensuring that we were giving her enough tummy time; at the 6th month she instructed us to make sure we were working on getting her to sit up on her own.  Each visit brought another instruction: she’s OK, but just a little behind here and here; her weight is fine but make sure she is getting enough formula throughout the day.  By her first birthday this speech pathologist was officially concerned that we were dealing with quite a few delays; by her 18th month we were setting up referrals with developmental specialists.  Shortly before her 2nd birthday she finally took her first steps; first words came later.  Mid-way through her second year her physical therapist asked if we had any sensory concerns.  By her third birthday I was researching clinics and reading books on sensory processing disorder while at the same time struggling to accept the fact that my daughter, the child of a pediatric speech pathologist, still had some very significant speech and language delays.
At some point in the midst of all this the idea of “advocacy” took on new meaning for me.  I like to think that I am an advocate for all three of my kids – that I see their needs and campaign on their behalf to make sure that those needs are met.  But this was becoming something new and more urgent.  This wasn’t about getting my kid into the right school but making sure she had the opportunity to even apply to that school.  My worries were not about making sure that the world was her oyster, but that she would be able to navigate in this world independently.  
These are still my worries.
In case you’ve never spent much time with a speech pathologist, it might be helpful to know that we have, and use, a lot of words.  After all it’s baked right into our title.  We are also passionate about doing everything we can to meet the needs of the people we are serving and fighting to get the resources our patients/clients/students need.  Given these two facts you can imagine the exponential drive you feel when you are working on behalf of your own child. So when an early intervention team told me –me,  a pediatric speech pathologist – that they weren’t recommending speech services for my almost two year old who had, at that point, maybe 5 words (intelligible to a familiar listener), well…  they heard about it.  They heard a LOT about it.  I had plenty to say about that decision and found plenty of peer-reviewed evidence to refute their offer.  (It also helps to know a lot of other speech pathologists who had plenty to say about this decision, too. Becca had an army behind her, let me tell you.)  And to my great relief – and theirs too, I am sure – they relented.  
This would not be the last time I put on my armor and went to battle for my kid. And I know I haven't seen the end of it, either. Because of her I am more courageous and determined than I ever knew I could be. One of a million ways this girl has made me a better mother, friend, therapist and advocate. I owe her more than she will ever know.
Soon enough our girl was getting speech, physical and occupation therapies.  Three hours of therapy a week. We started "preschool" a year or so earlier than we had planned, with the hope that more peer interaction would provide good models for her. Eventually we added SMOs - those short little orthotic "braces" you sometimes see kids wearing - to help stabilize her ankles to improve her walking/climbing/running skills; we even tried a (very brief) stint with a pressure vest but that proved one bridge too far for this mama. All the while the gains came, but oh so slowly. So I asked her SLP, a friend and colleague from work, if she knew of any other resources we might consider. She suggested a local clinic that integrates hippo therapy into their program. And before long we added two more hours of therapy - five hours of therapy, every week, plus two 6 hours days of preschool. Throw in the random visit with the developmental pediatrician, ear, nose & throat doctor, audiologist, orthotist and orthopedic physician and the child had a busier calendar than I did.

The gains continued to come, but still so very slowly; for every 2 weeks of spectacular progress there were 6-8 months of hard work that preceded. Throughout all of this I continued to ask more questions about sensory processing and tried to make sense of how this was, or wasn't, impacting Becca's progress. I have described it many different ways: a fog, a veil, "Becca's World;" at the end of the day SPD feels like a barrier that keeps us from reaching her, and Becca from realizing her full potential. But my training as an SLP didn't equip me with the knowledge or the skills to figure out what was at the root of the fog or how to help burn it off.
Eventually I decided that this was a riddle we couldn't solve on our own, and the treatment models - familiar to me through my own clinical experiences - used by most clinics are valuable for identifying, addressing, and measuring very specific goals but they weren't ideal for helping kids and families unravel SPD. I felt like we were stuck, and I couldn't see a way ahead that would get us where we wanted her to be.
And then I found STAR.


Friday, July 14, 2017

Rewind

My three year old daughter, Rebecca Jane, came into this world with both arms swinging.  Literally.
To say that Becca was a surprise is an understatement.  To suggest that she was a miracle may be an overstatement – but to her father and me I’d say it sounds just about right.  After eight years of waiting and wondering, the hope of adding to our family was something I was struggling to let go of but for the peace of mind I’d decided I needed to do it.  And then, of course, right on cue – it happened.
I spent those 9 months mostly scared that I would lose her.  Worried that, at my age, something would go wrong.  The fear was so intense that my body shook uncontrollably at the first ultrasound confirming the pregnancy; I was convinced that she wouldn’t be there, that my body had played a terrible trick on me.  But she was there for sure, her heart beating like a champ.  And at every visit thereafter we checked, and that strong beat-beat-beat just got stronger.  The prenatal tests, offered to pregnant ladies “of a certain age,” all came back normal.  This was really happening.  And every prayer was being answered along the way.
Around the 8th month we took a trip to Walt Disney World.  (A lady who is 8 months pregnant only goes to Disney World when she booked the trip long before discovering she would be 8 months pregnant when she got there.)  The trip was fine, even as fun as it could be under the circumstances, but it was a turning point because at about that same time my body started making a little too much amniotic fluid.  Not the biggest deal, really – and certainly better than not making enough – but because of this little Becca Jane had quite the swimming pool to play around in.  And boy did she, because every week we would come in for our 9th month visits and every week she had moved to a new position.  Instead of settling in for her move-out date Miss Bex decided she liked acrobatics and so, because we didn’t know how she’d present when I went into labor, a c-section became the safest choice.
I’d had a c-section with my oldest child, too, and so the thought of it didn’t scare me.  It was a little weird scheduling my baby’s birth, but I was OK with it.  (Actually, the control freak in me loved it.)  The day arrived, we headed to the hospital and after an oddly unceremonial admission I found myself in the surgical suite succumbing to anesthesia-induced vomiting but still so amazed that I was really going to be holding this little miracle in just a few short minutes.
But it wasn’t a few short minutes.  Becca’s acrobatics never let up and the two OBs who were there for the delivery (you get two when you are old and have a gymnast living in your belly) struggled to bring her safely into the world.   If you’ve never had a c-section you might not know this, but the truth is that at that time you are absolutely the least important thing in the room.  With the exception of the anesthesiologist, every last set of eyes is focused on that open belly and the little life that is about to emerge from it.  At some point between the waves of nausea I realized that we had been there for an awfully long time, and that the conversation between the husband and wife team that was delivering my child wasn’t as light-hearted as usual.  After the fact Rob would tell me that Becca did so many flips and flops during the surgery that they had to push her back into my uterus, because  you don’t deliver babies hands-first.  Or butts first, or feet first if you can help it.  But finally she arrived.  Icky and furious, just like healthy babies do.  But here at last – healthy and miraculously ours.
The problems started later that day.  At some point her breathing became labored; my sister and mother-in-law, both retired nurses,  told me a few weeks after she was home that they saw the chest retractions in the nursery and knew something was wrong.  The NICU team was called down to check on her a couple of times; eventually they took her away.  A doctor came in the middle of the night to tell us what was happening and what they were going to do; at some point there was talk of an n-g tube, a thin tube used to feed babies who aren’t well enough to eat safely on their own.  I was stuck in my room, still vomiting from the anesthesia.  Rob bounced back and forth between the floors, telling me what I needed to know and holding on to the things I didn’t need to know until I could process them later.  The next day I finally got to go see her; 24 hours later I properly met my baby girl.  I asked the nurse if I could hold her – my own baby.  I cried when she picked her up and put her in my arms, a mix of happy and sad and scared tears.  She had a splint on her arm and lots of lines to monitor her vitals and she was covered in bruises from the shoulders down, courtesy of her bumpy entry into the world. But she was beautiful to be sure.

Our NICU story isn’t all that dramatic.  Becca had a small pneumothorax, a space between the lung and the chest wall that was filled with air. A couple of non-invasive treatments took care of this and her breathing improved.  But her feeding wasn’t great and her monitors alarmed enough with low heart rates and oxygen desaturations that she bought herself a week-long stay in one of the pricier rooms at the hospital.
I went home, without her, three days after she was born.  It was one of the saddest experiences I’ve ever had.
As NICU babies go Becca was a monster, born full term and with relatively minor medical issues.  Not that I found this particularly comforting at the time, but as someone who sees medically complex and fragile infants at work, I knew she wasn’t in any imminent danger.  This can’t be said for so many other families who spend weeks or even months in the NICU, becoming experts in medical jargon and managing tubes and leads and monitors – all the gear required to keep their children alive.  I marvel at these parents.  They are amazing.

Life at home with our newborn girl was relatively uneventful.  We slept little; she cried a lot.  The painful reflux subsided and her sweet disposition emerged.  She had the cutest little toes, and cheeks for days.  She loved her swing.  She cooed and smiled and rolled over; she mastered the spoon and her cheeks got chubbier.  She and the dog engaged in a mutual love affair.  My first-born became the Best Big Sister, Ever.  The dream really had come true.

Wednesday, July 12, 2017

Exhale:Inhale


It was about 4:30 in the afternoon yesterday when I finally got to exhale.
I find it hard to believe that there is actually a single soul out there that doesn’t know this already, but our little family packed up the minivan and headed out west last weekend for a month-long investment in our middle child.  Five people, one dog, and a ridiculous number of electronic devices made the 20 hour drive to Denver to see if we could start to unravel some of the mysteries that bind up our sweet Bex.
But really, the 20 hour drive was the easy part.  This adventure has been over a year in the making, starting with a book, a desire, and a ha-ha joke that didn’t end up being such a crazy idea after all.  It took phone calls – so very very many phone calls – and more favors than I can begin to recall.  It took patience and faith, both in very short supply in this little heart of mine, and reassurance from friends who reminded me that sometimes I have to just wait things out, even when I don’t want to.  It took courage to ask for extraordinary consideration from not one but two large employers who really didn’t have to accommodate us to make this journey and learn about a disorder that is unknown to most and poorly understood by many.  It took a foolish, stubborn refusal to acknowledge financial reality and a lot of persuasive writing to convince perfect strangers to invest in our hopes for our little girl.
And now, after all of that we are here.  The suitcases are unpacked and we are five hours into a 45 hour intensive program to help us learn how to parent a child whose brain is wired just a little differently.  It was after that fifth hour, on our way home from a mentally and physically exhausting three hour day, that I finally allowed the doubts to subside and my throat to relax.  No more holding my breath.  I got to exhale.
Now inhale.  This is when the real work begins.

Sensory processing disorder (SPD) has been vexing me for nearly 4 years but I didn’t recognize it until we were neck deep into therapies and appointments with specialists and wondering how many different programs we could have the poor kid doing at once; I still wish we could find a way to take her to KinderMusik and swimming, and I’ve read that martial arts have nice carry-over benefits for executive functioning.  But at the end of the day there is always this Thing, this vapor that seems to surround her and never really dissipates.  Our girl is in there – we see flashes of her humor and intelligence, and her sweet, gentle heart is obvious to everyone who meets her - but we can’t cut through the fog to help her find the way out.  That is what SPD looks like in our lives. 
But it’s different for others.  In some there is a hypersensitivity to touch, sound or light.  In others it might be an incessant need to move, jump or spin.  Some might love the feel of tight clothes on their bodies; others might cringe at the lightest touch.  One person might love to feel different textures, another might hate the feeling of anything on their skin.  SPD is no one set of symptoms, and it often manifests itself in a variety of ways in one individual person.
After a two hour evaluation, and another two hours of filling out parent reports, our occupational therapist (or OT for short), Mim, sat down with us yesterday to talk about how SPD seems to be presenting itself in Bex: decreased arousal, sensory under-responsivity, and sensory discrimination disorder – specifically in regards to position/movement.  What does this look like?  It looks like this:


More often than not you will find Bex laying on the floor, the counter, the sidewalk… any place hard and relatively flat.  You might see her with a handful of Playdoh, but instead of squishing it in her hands or rolling it into a snake she has it pressed against her face.  As an infant Becca would seek out ceiling fans and could spend several minutes just staring at them; now you’ll be more likely to find her on the floor, next to her beloved black lab, shaking her head back and forth.  When she is running around like a typical toddler you might notice that her run is erratic, arms and legs akimbo, and that she often trips over literally nothing.
This is what SPD looks like at our house.
What Mim said yesterday didn’t particularly surprise me but it was reassuring to hear that what we see really does exist, has a cause, and can be addressed.  Knowing that we were there with someone who not only sees what we do but also sees the path to helping Becca learn to regulate these things was a relief.  She’s like our SPD Sherpa: our guide who does an awful lot of the heavy lifting but whose goal is to help Becca, Rob and me make it to that summit that seems impossibly far away. I can’t image how we will get there but Mim is a believer. And a believer is what we need right now.

Saturday, December 24, 2016

Me and George Bailey

I am not much of a knitter but my friend Amy?  

She is one of those clickety-clickety-clickety knitters.  Her second knitting project was a poncho.  An adult-sized poncho.  That’s a lot of yarn, my friends.  She picked up those needles - even the scary, double-pointed kind - and never looked back.  Cabling?  Check.  Felting?  You bet. Intarsia?  I don’t know but I do know she knit Bambi mittens.  BAMBI WAS ON THOSE MITTENS.  OK?

I am a wanna-be knitter.  And as much as I would like to clickety-clack like Amy I am making peace with the fact that my knitting skills will probably never be much more than serviceable.  After many winters of struggling I am now pretty darn proficient with scarves, simple hats and cowls.  (My poms, however, are legendary.)  Knitting in the round is my jam.  And although I had to rip apart my next-to-last project about 8 times before I got it right (ball yarn over the thumb! don’t twist those stitches! there was nothing actually wrong the 6th time!), I can proudly report that my last project was cast on without a hitch.

I have a sweet little circle of friends.  On the face of things the four of us really couldn’t be more different, although there is some sort of magical glue that holds us together.  These are the ladies who get reports on the state of defacation at our house (a more common topic amongst mothers than I ever would have imagined), who hear me rant about my husband (it happens), who get the stunned phone call that I’m pregnant.  Again.  (No, no - I’m not.)  These ladies hear it all.  And they still like me.  It’s a small, everyday miracle that they are in my life and let me tell you:  I don’t take it for granted, not even for a second.

At this time of year I feel compelled to find them the perfect gifts.  This is harder than you might think, although I suspect it’s much easier than I make it.  And while Elaine definitely won the Best Christmas Gift Award this year I still feel like I owe these ladies something special.

So, I bought my most favorite yarn and picked up the needles.

Given what I’ve said about my knitting proficiency it would be understandable if you were to find yourself thinking that maybe my “serviceable” skills were going to make for a fairly lackluster gift.  And it’s entirely possible that you’re right.  I can’t knit anything fancy - and if you’ve paid attention there’s a pretty big hint about what I may have come up with for these girls - but I can knit with heart.  That’s exactly what I did, actually:  I knit those ladies right into my heart.

I know, I KNOW: Cue the cheesy background music.  But it couldn’t be helped, really.  As I sat there knitting I found myself thinking about each of these amazing women.  I wondered what prompted me to choose that particular yarn for each one.  I thought about our individual friendships and how they’ve unfolded.  I meditated on the two or three or four words that I felt were most representative of each of them.  I prayed for them.  I gave thanks for them.  


MALABRIGO RASTA, ARCHANGEL
When I found the most colorful yarn they had I knew I had the right one for Amy.  Amy is one of the bravest women I know.  She is the one who encourages me to embrace colors and patterns that I might ordinarily pass by (lifelong wallflower that I am).  She is passionate about the people and things that she loves.  She has challenged my thinking and my assumptions, and helped open my eyes to a lot of truths I didn’t realize I had never seen.  Amy is fiery when she needs to be.  She is honest but kind.  Amy isn’t afraid to reinvent herself - or, if she feels that fear, she isn’t bound by it.  She inspires me to be better.

MALABRIGO RASTA, INDIECITA
Thinking about Tricia feels…  comfortable.  In so many ways she is a reminder of the life in my house when I was a child.  She is down to Earth.  No-nonsense.  When I chose her yarn I think I had the blues and yellows in mind - a little too obviously reminiscent of her features, I’ll admit - but as I started knitting I saw a predominance of green and wondered: Green?  But as I got further into the project it became obvious: She thinks about gardening with the same ease and simplicity as my mom, and it invites back all of those memories I have of digging and planting by her side.  Tricia is fiercely dedicated to her family. When I talk with her I feel like she is fully invested in knowing and understanding me.  Sometimes I find myself thinking “I am really just not this interesting,” but Tricia would never let you believe it. 

MALABRIGO RASTA, AZULES
I suppose if there is a center spoke to our crew, or Council of Ladies as we sometimes refer to ourselves, it is Elaine.  But that is who she always is: the one person in the room who will embrace everyone, the friendly spirit who will welcome you in.  She is, without a doubt, the most generous person I know.  She understands what you need, even when you can’t see it yourself, and she sets out to make sure you have it.  When you are broken Elaine builds you back up.  She is a light in a world that is all too often very, very dark.  She is warm and safe.  She is the best kind of friend you can ever hope to have.  I chose her yarn because it captures the intensity of blue in all it’s hues - pure, clear blues, from the most saturated navy to the brightest aqua.  This is her: a true blue friend.



At the end of the day this knitting project evolved into something else altogether.  It was an exercise in reflection, for sure, but oddly enough the time I spent bent over those needles left me better than I was before.  A better friend?  I don’t know (I should be so lucky), but certainly a better knitter, though still far off from the clickety-clickety-clickety speed that Amy has mastered.  And it really makes perfect sense because these ladies are always making me better.  More thoughtful, more brave, more tolerant.  It is just like them to turn this given-gift into a gift received.

So.  Merry Christmas to The Council, my dear friends whose generous spirits never cease to amaze me.  Thank you, thank you, thank you for the gift of knowing and loving you.


Me and George Bailey.  We’re the richest people in town.

Sunday, November 13, 2016

Common ground

So.  You've said some things, I've said some things...

I don't know.  Maybe it's too soon?  Maybe the anger on both sides is too raw to try and have a heartfelt conversation?  Maybe the wounds are so deep and jagged that we need to retreat and tend to them before we can exercise those relationship muscles again?

I don't know.

I don't know how it all got so ugly.  You are my friend.  My family.  Someone I've trusted and admired, laughed with and cried with.  And then so many people rushed in:  political surrogates, pundits, activists.  They all told us what they wanted us to believe.  Some of it was true.  Some of it wasn't.  A lot of it preyed on our fears.  For some, it stoked the fires of anger and hate - anger and hate of all political stripes.  Sadly, there is enough to go around.

But I just don't know.  I don't know where to go from here.  I want to offer my hand, to grab yours and squeeze it tight and say "this is all going to be OK."  It has to be OK, right?  And I don't mean politically.  You may have loved Clinton or loathed her.  We all know what I thought about Trump.  But it is what it is.  Despite all my misgivings, he is going to be our president.  It's done.  And unless my wildest, darkest nightmares play out I don't think he will single-handedly unravel the fabric of America in four years.  But that's not what I mean, I don't mean politics or policy.  I'm not talking about trade agreements, tax plans or infrastructure.  Those things are meaningful, don't get me wrong.   But it's not what I'm talking about.

I don't know how to say this in a way that won't sound....  harsh?  Maybe that doesn't matter, so I'm just going to say it:  Things are not OK, and it seems like you can't see it, or don't want to see it, or simply steadfastly refuse to see it.  There are vast divisions in this country - but they aren't between you and me.  They are between the marginalized and those that choose to actively marginalize.  It's real.  It's happening.  It's the chasm between the single black mother of two young boys and the bigot who sprawls "get out nigger" on her car.  It's the disconnect between the young, independent woman walking down the street and the males who promise to "grab her by the pussy" as they drive by in their car.  It's the incongruence of Christ's church, obliged to serve as His hands and feet, standing mute before their defaced sanctuaries, marred with words and symbols that could only be from the devil himself.

I don't know how it's possible for us to disagree on the wickedness of these things.  Is it possible?  Or can we at least look each other in the eye and say "of course these things are wrong?"  How can we not find this sliver of common ground?  It's such a small stretch of green but there's room enough here for both of us - for all of us.  Surely, surely we can lock arms and stand together in our intolerance for things such as these.  Can't we?  I'm not sure I can bear the thought if we can't.

I don't know how our government will unfold in the coming weeks, months, or years.  We have all had the chance to say our piece and we have elected the men and women that we are entrusting to do right by all of us for the next four years.  But we have to make sure that we are not leaving anyone behind  - the ones who are targets because they are different from the cowards who persecute them, the ones who are belittled because of their faith or their gender, the ones whose pleas are drowned out by the din of angry voices who shout only for their own interests.

I don't know.  I don't know how we do it, how we make sure that no one is lost along the way.

But I know we must.





Monday, July 11, 2016

First things first: take off the color-blinders and leave your baggage at the door

I've wondered so many times how to begin.

The silence about what is happening between "black" and "blue" has been deafening from many family and friends.  Good people.  Honest, hard-working people.  Believers. 

White folks.

I first started working through my own thoughts and feelings about these things about a year ago.  Another black man had been killed while in police custody and my first thought was "well, I mean he must have done something.  The police wouldn't stop you just for      fill in the blank     ."  And I held to that for a long time, until I started reading more and more posts from friends who had experienced otherwise.  Strong, smart, successful people - black people - who had no reason to lie or exaggerate their stories.  People I trust.

So I started asking questions.  I asked if they would mind telling me more.  If it was OK for me to ask them about their experiences - not just with law enforcement, but with life.  It dawned on me that I couldn't draw conclusions about their lives by looking only through the lens of my own.

I'm embarrassed to admit it, but it wasn't until the ripe old age of 44 that I stopped looking at life from the same perspective as my toddler.

I spent two fantastic years at Purdue University where I was taught to critically examine evidence.  Who is offering this proof?  How was it vetted?  How big was the sample size?  Who is funding the research?  Was the study well designed?  Were the right questions asked?  What does the data really tell us?

This is how I'm trying to look at race right now.  And racism.  And privilege.  Where is my information coming from?  Who is providing it?  What do they have to gain/lose?  How many people are saying the same thing?  What questions are being asked, and were they ever really answered?  What does it all tell us?

Of course it's impossible to be dispassionate about what's happening these days but for the sake of change I think at some point we need to be able to talk and think about race without the baggage of an agenda.  Black folks are scared and angry and, more than any other word I see out there, they are tired.  White folks are scared and angry, but for entirely different reasons.  I acknowledge the feelings on both sides.  But I also respectfully suggest that right now, it's my white family and friends who need to put their fear and anger aside and just LISTEN.  We are so busy defending ourselves that we aren't even listening to the issues for which we are being asked to account.

For as long as I can remember we've talked about being "colorblind."  And I guess if  you don't stop to think about it that's a nice sentiment.  If I don't acknowledge your color I can't be accused of judging you by your race.  Sure.  But let's be clear: skin color is no more a marker of a person or a society than hair color or eye color, height, weight, or shoe size.  Skin color is an easy marker for what makes us different but it is meaningless.  What really makes us different are the lives we lead, the languages we speak and the cultures of our communities.  If you put me next to another overweight, reasonably well-educated, tired brunette mother in a side-by-side photo you might assume we have a lot in common.  But if that woman lived in, let's say, Lisbon we might struggle to find any common ground:  different languages, customs, political beliefs, religious beliefs, diets, fashion...  I really have no idea what life for a woman in Lisbon might be like.  Our outward appearances alone would inform absolutely nothing when it came to what we have in common.

I think it's the same here, only generations of US history have created vast cultural divides between white and black America.  Our attempts to erase those divides by simply disregarding color were perhaps well-meaning but most definitely ill-conceived.  Just like I use different languages when I speak to a doctor and a parent, all while conveying the same information, many black and white people use different language to communicate with people who share their own cultures.  And there is nothing wrong with this - until one culture possesses more power and determines that the other language is inferior.  And it doesn't stop there:  religious practices, family dynamics, cuisines, fashion, beauty - we have fostered a pattern of "us" and "them," and "we" who have historically held the power have subtilely and not-so-subtilely determined that "they" are inferior.

Now.  I don't believe most white people wake up determined to make these distinctions or determinations.  I think it's just what we have been steeped in for generations.  It is unconscious.  And to the extent that it's not intentional it's forgivable - until that moment when you recognize your complicity.  Then you are on the hook to do better and be better.  We cannot be "colorblind" anymore because we have defined society in this country by race.  Instead, we have to recognize our differences without making judgements about them.  We have to look at the life of a black family as different from ours because it is different from ours.  Not in they way they love their kids, or work to provide, or value their liberties, or love this country, or honor God.  But in the way they live, how they interact with the world and how it responds to them.  Why do we assume we know so much?  Why do we assume that black men aren't interested in being good fathers?  Why do we assume there is no desire to break a cycle of poverty?  Why do we assume that we can't help the black community until they figure out how to "help themselves?"  Have we really taken an honest, unbiased look at life for black America?  Have we cared enough to even do that?

I don't think so.  I know I didn't.  I didn't know I had to.  

Probably, if you've stuck with me this long, you've already gone through this thought exercise.  You are wondering how I could be so colossally dense about all of this.  But maybe not.  Maybe you're waiting for me to get to the punchline so you can weigh in and tell me how wrong I am.  That is certainly your right and, in all honesty, I'd love to hear and try to understand your perspective.  But since white folks are so accustomed to thinking about life through their own point of view, let me frame it this way:

I have three children.  They are all happy and healthy with their own unique personalities. But outwardly, one is noticeably different.  She is small and clumsy.  She is obsessed with fans.  She is not a great talker.  She has some unique behaviors that don't make a lot of sense to me.  Based only on those things I could decide that this child won't ever quite measure up to the others.  I could expect less from her because she is able to do less; things are simply harder for her.  I could continue to love her and care for her, never really knowing whether I was doing the best that I could for her.

Or, I could do the work of trying to understand her.  I could read, talk with people, observe her.  I could ask a million questions.  I could ask another person, or two or three or a dozen more people another million questions.  I could keep learning and reaching out until I felt like I really understood what makes this child tick.  And in doing that I could make changes.  I could see that my good intentions from before maybe weren't what was best for her.  I could make adjustments to my own life for the benefit of hers.  I could maybe even realize that all of the efforts I made to lift her up also lifted me up, too.

I suppose I view my efforts to understand the black community in much the same way.  Despite my attempts at "colorblindness" I've always viewed them differently but never bothered to understand them. And while I'm not suggesting that it's white America's job to "save" black people, I am suggesting that we would be honoring them and helping ourselves by making a deliberate effort to understand their lives and help lift them up when we can.  How different would my daughter's life be if I raised her through the lens of my own life experiences rather than working so hard to understand the needs and realities of hers?

How different could things be if we would extend the same love and respect to an entire race?


It still makes me twitchy to say "black people" and "white people" as though we are different.  But in as many ways as we are the same we do lead very different lives.  It's time to see that and own it.  "Black" and "white" is not the end of the story.  It is the story.  And for everyone's sake, I'd really love it if this story got to have a happy ending.