The Waiting (Room) Game

I've written before about my awkward relationship with clinic waiting rooms.

The majority of my professional life has been spent on the other side of the waiting room door.  Back there where we do tedious tests and provide therapies, playing with play-doh or Don't Break the Ice, reading Goodnight Gorilla! or building endless iterations of Mr. and Mrs Potato Head.  Of course these days my life revolves around all manner of creative ways to present barium as the best! snack! ever! and delivering more bad news than good - though, fortunately, the good makes a sometimes disheartening job worth the doing.

And the paperwork.  Lord help us, the paperwork.

But for the last 3 years I've found a place on the outside of that door.  Sitting in the clinic waiting room with other moms & dads, sisters & brothers, watching new sisters & brothers enter the world and other clinic kiddos come and go - changing to a new day, moving out of state, heading off to school.  

I don't like it out there.

I never have.  And it's not because I don't like the companionship; it's because I didn't choose it.  I won't pretend to speak for another mother or father but I think most of us, given the choice, would rather that our children not have to face the challenges that they do.  We love them as fiercely as any other parent loves their child, for sure.  But I think it's that love that leaves us wishing that our kids didn't have to carry the loads that they've been given.  I would gladly pick up Becca's challenges for her if I could.  No questions asked.

But of course it doesn't work that way.  Not for her, or for my other two kids and any of the difficulties they may face.  It is what it is, and it's not going away, and so - onward.

Today Becca headed off to see Miss Jaime and Gideon for OT.  By all accounts she had a great day today and our girl is starting to bust out some very nice circles THANK YOU VERY MUCH, and was working the buttons, zippers, clasps & snaps on therapy dog AJ's vest. (Thank you Jesus for AJ, sweet Dorian, who is gone but not forgotten, and our own beloved Midnight, three dogs who speak to Becca as much or more than any human among us.)  In fact, allow me to brag for a minute because she is making steady strides in all of her therapies:  now pedaling and steering the tricycle, walking the 6" balance beam like it's no big deal, climbing the ladders and rock walls on our backyard play set, and getting some legitimate air when she does a two-footed jump.  Speech and language have exploded this year and I hear her using new, novel vocabulary all the time.  Even my brother noticed her growth this summer.  After a brief exchange she and I had in his kitchen, CJ looked at me and said "Wow - that was an actual conversation."  

Recently we have started bringing Libby along to therapy appointments because she's finally old enough to be manageable, if you know what I mean.  Plus there are a couple of other siblings around on Tuesdays and Thursdays, and she enjoys playing with them.  And I enjoy watching them, but I won't lie because it's bittersweet seeing this mismatched crew of "typical peers" playing so.... naturally.  It all comes so easily to them: pretending to be bullfrogs, hopping up and down and under and behind; negotiating turn-taking; asking to be friends; chasing each other and giggling and chasing some more.  It's so delightful to watch them talk and play and argue and regroup.  Just like kids do.

Just like kids - who don't have to work so very hard to do all of those things - do.

I'm incredibly proud of the gains Bex has made, and I'm so thrilled with her steady progress, but these waiting room observations are also a reminder of how far we still have to go.  There's just a little ache that comes along with every visit, a tempering of my hopes and enthusiasm that puts my feet ever so firmly back on the ground, where I find myself still sitting on the outside of the waiting room door, comparing notes with the other moms and dads, reviewing and updating goals, contemplating that additional intervention that has been recommended, worrying about the expense of hours and hours of therapies every month, condemning myself for not doing more work with her at home, pushing back the guilt of shorting my other two kids, finding joy in the smallest victories and humor in the universal honesty and goodness of all kids - whether they have a "diagnosis" or not.

There's a lot that goes on out here, and a lot of waiting for things that transcend our 60 minute appointment.  And I don't like it.  But you can rest assured that we'll be back Thursday, and Friday, and Tuesday, and Thursday again and again and again.  Because it is what it is, and it's not going away, and so - 

Onward.

Togetherness

It’s been awhile since I’ve written an update on Becca and SPD.

Well, she still has it!  SPD is part and parcel of our fabulous middle kid, right along with her crazy curly blonde hair, sparkling blue eyes and insatiable love for music, dinosaurs and Midnight, our painfully loyal black lab.

But let me tell you this: Becca is a different child today than she was just three months ago.  Remember way back in July, when I first talked about engagement?  Well I’m here to tell you it is magical.  MAGICAL!  When we first took on the job of engaging with Becca it was hard, and slow, and most of the time it made me really sad.  It’s tough knowing that your kid is hanging out in a world without you, and that you have to work really hard to join her there because it is by invitation only and those invites are exclusive.  Early on, when those times that we engaged were so fleeting, it seemed impossible to think there would come a time when connecting with her would come naturally.  When you could really play together, almost effortlessly.

A few days ago, while Libby was napping, Becca and I really played together.  We laughed, both of us, together.  We had so much fun… together.  And while I may have initiated our play time, she perpetuated it:  she sought me out for another turn and another turn and then another; she responded to my tiny tweaks to change the game, not with her famous, nasal “noooo” but instead with the tiniest twinkle in her eye that said “ohhhhh…  I get it, and this is fun, too!”  If all of this has come naturally for your children then I know these may not seem like big things to you, but when you are working really hard and really intentionally to make it happen - well, I promise they are big things.

This has been our Fall Break week and oh boy, there hasn’t been a single break to be found.  Everyday we’ve been out and about, going and going and going.  I am so exhausted that the just thought of picking the girls’ books up off the floor brings on at least a 30 minute nap.  But still, Rob and I made a pact that our week off would be put to valuable use by spending time with our kids:  The Newport Aquarium, the Haunted House at the Children’s  Museum, a trip to the pumpkin patch, a morning at the zoo.  

Our last trip to the zoo was exactly one month before our trip to STAR.  At every exhibit Becca, in her typical fashion, sought out only the finest horizontal surface so she could lay down for a few minutes.  Hard and cold were her preferences, but hard and and bumpy would make do.  Benches, deep concrete window casings… she honed in on them like a pro.  But if you took your eyes off of her for even a second?  It wasn’t a big deal at all because she would still be laying in the same spot ten minutes later, if you let her.

This week’s trip to the zoo was a whole new ball game.  Becca never stopped.  Not once.  We chased her - four adults and her two sisters - the entire time.  As soon as we found the macaws she was ready to move on to the tiger.  Found the tiger?  CHECK!  Bring on the brown bear.  GOT IT! NEXT!   It was a complete about-face from our last trip.  And in case you are wondering, I’m not suggesting this is ideal, either.  One thing we learned about kids with SPD is that the pendulum swings broadly and that zone where they work the best - the place where the rest of us who don’t constantly wrestle with sensory dysregulation spend most of our time - is very narrow.  So while our zoo trip in June was at the one extreme, our trip this week was at the other.  But you know what I’ll take it, because at least now the pendulum is swinging.

For better or for worse, and despite everything I’ve learned about SPD and engagement, this speech therapist mama still can’t help but mark Becca’s progress by language development.  And here, without question, Becca still struggles - but also, she shines.  Sitting at the kitchen table in Colorado I was floored when Becca strung together two words to express a novel idea.  Now, we routinely get three or four, sometimes even five or more words.  Nouns and verbs.  Adjectives and locatives, even!  (Pronouns, articles and helping verbs?  Not so much.)

She answers questions and follows directions.  She comments on things.  She not only tells us when she’s hungry, she tells us what she wants (current faves include cheese and candy corn).  She tells us when she’s tired while simultaneously insisting that she doesn’t need a nap.  She laughs when things are funny.  She talks about dinosaurs and Midnight, initiates many a rousing sing-a-long, and refuses her parents like any other three year old worth their salt.  I have been known, once or twice, to wish she would just be quiet for a second.  (True story.)

So are we there yet?  Nope.  We are not.  And we still don’t know where “there” is, exactly.  But we are no longer parked on the sidelines, waiting for Becca to get up from her comfortable cold stoop to take a few more disinterested steps forward.  We are chasing her now, marching forward toward whatever comes next.  She has invited us along for the journey and all of us, together, are amazed by the adventures we are having along the way.

It’s a long trek but now we are making it together.  And together I know we will keep on going as far as this journey may take us.

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.

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.

Spring Awakening

I’d like to say it all started with a pair of red pants.

I’d love to start the story there.  But the truth is it started a lot more timidly.  It took consultation and self-reflection.  It took a change in mindset and the benefit of the wisdom you acquire after 44 years of life on this Earth for me to get to the red pants.

But don’t worry, you don’t have to wade through 44 years of wisdom.

Today, for the first time in my adult life, I put on a pair of red pants.  I imagine this does’t mean much to you.  But to me it provides just enough shift in my day-to-day paradigm that I feel like I can do anything.  Proof of this?  I just vacuumed (most) of my house.

Bold trousers aren’t something I’ve ever put on a body like mine.  I’m not small.  I’m not even medium.  If this were McDonald’s it’s safe to say I would be the Biggie Fries. I don’t love this fact but it is what it is, for now, and I’ve decided that my body - much like the fries - has earned the right to wear red when it wants to.  It’s not like the black pants change anything, right?

Motherhood had a little something to do with this.  I am now Mama to three (THREE!) girls and so the realities of being a girl, and a woman, in the world today are taking on new urgency for me.  I don’t feel like I’ve been treated unfairly in the past, but I have come to realize I’ve been treated differently, in part because I’ve allowed it.  And I’ve allowed it because it never occurred to me that I shouldn’t.  This isn’t a behavior I want to teach my girls.  Neither is feeling shame about how you look or what you value.  Will I ever be model thin?  God no.  But I can care for, and be proud of, the body I have today.  It has, after all, grown and delivered three beautiful souls into the world.  The least I can do is be kind to it.

So my girls are one reason I pulled on these pants today.  

I also had the counsel of a small but mighty group of women to thank for today’s wardrobe upgrade.  Because much like middle school girls everywhere I continue to look to my peers for advice and reassurance on what is acceptable to wear in public without risking complete social rejection.  And when I said “I’m thinking about getting some red pants” they did not move to another lunch table but instead said “I’m so happy for you!” and “I LOVE the idea of red pants!!” (They also gave me the thumbs up on a kelly green sweater.  I’m going all out, people.)

But I think really, at the end of the day, I ventured out of my safe but boring box because I’m ready to move on.  Move forward - in my wardrobe and also in my life.  With 44 years of wisdom comes the realization that time is not on my side.  20 years ago, when I graduated with a degree I would never use, I had the luxury of knowing my whole life lay ahead of me to figure things out.  That luxury is, naturally, slipping away.  But it’s been replaced by something new, and maybe even better:  Knowing that it’s all going to be OK.  Not perfect, without heartbreak or loss, and certainly with my fair share of failures. But still, it will be OK.  I am still afraid to go out on a limb, put myself out there, risk rejection.  I will though, because I don’t have the time to not do those things.  It’s too important - life is too important - to be afraid to fail.

This morning I took a risk and dressed up my Biggie Fries in a pair of red capri pants and met with a trusted friend to talk about what could be.  There’s so much to be afraid of.

I haven’t felt this good in years.

Maybe This Christmas

It never fails, this time of year.  It is the height of the Christmas season and, despite my very best efforts, I find my heart and my mind wandering to Life After The Holidays.  It always seems to offer the promise of a certain kind of quiet.  Not serenity, exactly.  Just...  a different frequency of chaos.

The seed catalogues arrived even earlier than usual this year but I've resisted the temptation to start dreaming of my very own Warfleigh Garden of Eden just yet.  (My growing belly serving as a constant reminder that weeding and pruning will come a distant second next spring is, admittedly, a helpful tool in controlling these impulses.)  Still, as Rob and I surfed through the hundreds of channels last night we passed by one of the many cooking networks just in time to see a chef slicing into a beautiful, pink fleshy cantaloupe and for a second my mind wandered to our backyard, and dreams of a trellis heavy with a dozen warm, juicy, sweet and sticky melons that are destined for many meals at our kitchen table.

Then I snapped out of it.

I love the Christmas season.  It usually grips me sometime just before Thanksgiving but I put up a valiant fight against succumbing to the commercial trappings that bombard us everywhere.  I roll my eyes at the displays I see at Lowes when I go pick up my autumn mums, but by the time mid-November arrives I'm secretly chomping at the bit to bake and shop and play my favorite Christmas albums.  Loudly.  Over and over again.  (We love to sing along.)  We have a lovely Thanksgiving and the very next day the Christmas preparations begin and they don't really stop until we've had the last get-together with the last relative that we couldn't possibly not see before the end of the year.

So all of a sudden here we are, days away from the holiday that annually reminds us - in tinseled and twinkled-light glory, no less - that we were all gifted with the most amazing treasure God could bestow on the world and every life here in it.  But despite daily, hourly, sometimes minute-by-minute reminders to myself, I am easily pulled into the mania of the season:  so much left to bake, fighting real-life living with children and pets and a husband in an effort to keep a clean(ish) house, worrying that I've not purchased enough for him, or that I've purchased too much for her, of that I've completely forgotten someone Very Important, or that I've sabotaged my own battle to instill a sense of gratitude in my children by picking up Just One More Thing because she would love it!  It's so easy to sink into not only fatigue but almost resentment about what is expected of you.  The thing is, I'm pretty sure I'm the only one with the expectations.

The manger was messy, and though there were gifts I don't believe Mary kept score of whose was best or who brought the most so she could reciprocate in equal measure.  All Jesus needed was a warm place to sleep, a full belly, and loving protection from his parents.  And He got it, with no resentment anywhere.  There was life buzzing around everywhere in that barn and I can't imagine that making do with a newborn in a stable could be described as anything other than chaotic.  Even so, there must have been a certain kind of quiet, too.  Being in the presence of God Himself, full of grace, glory, and wonder - I imagine an overwhelming peace that comes with that.  A beautiful, still fullness.

Maybe there is still time, this Christmas, to find that.

God meets grief (and wins)

I started having problems talking with some of my patients at work when it became clear that Mom was going to die.

Up to that point I was blessed with the ability to detach from emotionally charged situations.  I could give patients and their families very bad news, talk to them about end-of-life decisions, and keep myself empathetic but professional.  I wasn't cold; I was, as they say, "appropriate."

And then the shitstorm of dying from cancer hit, and I have never been the same.  Even almost 10 years later it's like the grief that I still carry around - because you always do, just a little bit, even if it isn't what you put on every day - latches on to the grief that these families feel and it takes over.  Their feelings of fear and sadness and shock are mine, too.  I know those feelings so well, the memory of them deeply etched in that part of me that also remembers the joy of seeing my children for the first time and understanding that my husband really, truly loves even the worst bits of me.  There is nothing complicated about these emotions, they just are.  They are the most real things I know.

Today I met another one of those families.  Although I didn't know it yet they had just learned that their baby, their only child, is going to die.  What I did know was that this baby was very sick and from what I could surmise the prognosis was going to be poor.  His parents were friendly and calm but obviously nervous.  It's tricky to navigate these situations: keeping things relaxed but respecting their fears, establishing yourself as an ally all the while knowing you are most certainly about to give them a serious blow and the last thing they will consider you is an ally.

The results of my test were, as expected, quite poor and I could feel the emotions rise as I sat behind the glass trying to figure out how I was going to talk to them.  They didn't need my grief to arrive, uninvited, into their own; they needed truth and compassion and a refuge.  I had no idea how I was going to offer this to them so I did the only thing I could think of.  I prayed.  I prayed that I would be able to talk to these lovely people with grace and composure and honesty, that my grief wouldn't once again intrude and keep me from giving them what they needed.

God has a funny way of answering prayers some times.  He knows what we can and cannot do.  And He knew that today wasn't going to be the day for me to rise to this challenge.  So instead, just seconds after I opened my eyes, the door opened and a nurse on the baby's medical team walked in - a nurse that, truth be told, I'm not especially fond of.  We talked a bit about what I had seen, and it was she who led the discussion about the results and what would happen next.  She included me in this conversation and I was able to offer my own expertise and perspective, but the onus of delivering yet another heartbreaking result was not on me.  Not today.  Not this time.

I guess it's pretty obvious that I still haven't shaken this family from my thoughts.  It was hard to come home tonight and see my beautiful, healthy happy baby girl and not also see their beautiful, broken baby boy.  The magnitude of their grief must be immense and even now it invites mine to come forward, too.  But what I also haven't shaken is the recognition that God heard me in my plea for help and He met me, right there at that very minute in that awful radiology suite.  He didn't make me wait, or allow me to fail this family, or scold me for needing Him when clearly there were people just a few feet away who needed Him more.  He was there.  He is here, everywhere, for all of us, all the time.  Fully.  Mercifully.  Full of grace.

Thank you, God, for your mercy and never-ending love.  Amen and amen and amen.