The Protestors

When I was in high school I attended speech camp every year (nerd alert!).  I was way into the forensics team in high school, participating in the acting events where I would compete, performing 8 minute pieces of different plays either by myself or with a partner.  And camp was Mecca for nerds like me.  It was held on a nearby university’s campus.  Every year the campus also hosted a camp for the Deaf during the same week as speech camp.  (Believe me, the irony of Deaf camp and speech camp running at the same time was not lost on me, even then.)

Every year I would watch the kids from Deaf camp in the cafeteria, the only time our paths would cross.  They ate lunch, signing across the table, having whole conversations without a sound.  It always brought up in me the question of whether I’d rather be deaf or blind.  My answer was always deaf, being blind seemed to require so much assistance, there seemed to be many more limitations on the blind to my fifteen year old self.  But as I watched these teens, I wondered if it wouldn’t be worse to be deaf.  To not be able to communicate with the world at large seemed untenable, beyond limiting.  I didn’t know any Deaf kids in my real life and so it seemed like if I was Deaf I’d be all alone on an island, isolated from the world around me.

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At the AG Bell convention the protesters arrived early.  On Thursday night I caught sight of them as we made our way back to the hotel.  One woman, who I’d later realize was the leader of sorts, noticed Liam’s implant and started signing to me, asking if he signed.  He doesn’t but I didn’t want to get into it with her so I played dumb, smiled serenely at her and steered Liam toward the hotel.  My stomach felt queasy.  The presence of the protestors stirred something in me I couldn’t identify, or wasn’t yet ready to wrestle with.

The protesters were a group from the Deaf (with a capital D) community.  They were protesting what they believed to be AG Bell’s silencing of the Deaf community because, in their opinion, AG Bell doesn’t value ASL and instead encourages Listening and Spoken Language.  Additionally, AG Bell promotes and encourages the use of hearing aids and cochlear implants, which some in the Deaf community object to as they feel it is trying to “fix” or “cure” deafness, a quality they don’t see as a disability so much as a difference in the human condition.  There’s a LOT to unpack with all of this, much of which I’m not going to get into here and now.  I’m still learning a lot with regard to this conflict and as a parent of a deaf child with a hearing aid and cochlear implant, it’s more personal than not. 

All I can say is I went to bed that first night feeling uneasy.  I wasn’t really angry with the protestors.  But I didn’t feel right either.  I looked at my sweet boy knowing he was little d deaf and wondering if that was going to be ok with him in fifteen years.

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On Saturday afternoon as my friend Lyra and I sat by the pool watching Liam swim she filled me in on what the protestors had been doing down in front of the hotel.  We’d been hearing rumblings about them from within the convention.  Security was on guard, not that any of us really worried for our safety.  The protestors had gotten a little more aggressive today though, arguing with families about their choice to implant their child.

As Lyra relayed one particular exchange she said, “I just feel so bad, some of these families have made an agonizingly difficult decision and these protestors are making them feel terrible about it.”

And with that statement my own feelings of unease came sharply into view.  I turned to her and said, “You know, the protestors make me feel bad because it wasn’t an agonizingly difficult decision.”  We never even really considered not using hearing aids and then an implant for Liam.  It wasn’t an option for us to have him learn ASL and participate solely in the Deaf community.     And seeing the protestors made me feel guilty for that.  They made me wonder if we should have at least considered the other side, looked into it more.   

The protesters made me feel, for a moment, insecure about our decision and the fact that it hadn’t really been a decision so much as the next logical step on our path.

And it wasn’t like I wasn’t empathetic to their arguments.  The Deaf community gets smaller as technology gets better.  Nowadays most deaf kids we know are completely outside of the Deaf community.  We don’t know anyone who exclusively signs, and Liam wouldn’t be able to communicate with them if we did.  I understand the fear that that instills, when it seems that all that you hold dear, the community that has given you everything looks as though it’s becoming obsolete.  And I also know that for some cochlear implants are not an option; the structure of some people’s inner ears make it impossible to implant.  As the Deaf community lesses it is these kids for whom I worry.  Who will be their home if everyone else can hear (with assistance)?  I may not agree with the protesters, but I can absolutely understand where they are coming from.

Which brought me to another feeling the protesters stirred up.  I’m not used to being on the side of the protested against.  Typically I tend to side with protesters, or I have no real understanding of a situation and take neither side.  It was an uncomfortable feeling to be on the side of “power” (not that I really think AG Bell, and those who choose implants and hearing aids are on the “power” side of the scale-it's just that typically those protesting do so because they feel powerless).  In this area of our life, if the Deaf community is the one feeling marginalized, we are certainly not on that side, and would actively fight for our right to continue down the path we have chosen.

In the end, that’s where I land.  I would never in a million years tell a Deaf parent that their deaf child should be implanted and immersed in the hearing world.  And so I’m not going to feel bad about our choice to bring Liam into our hearing community.  I understand all the reasons people would be worried about CI’s and the risks that they may not work, but I’ve watched his progress for the past five years and I know we made the right choice.  When I think back to those kids in the cafeteria at Deaf camp I know they were fine.  They’d had their community, they were confident, self-assured and intelligent.  Liam would have been fine if that had been him.  But, all those years ago, my heart recognized the chasm between those kids at Deaf camp and my peers at speech camp.  We lived in two separate worlds; their world was not better or worse than mine, and given the right tools (sign language or an interpreter) we could bridge the gap.  But by and large the ins and outs of these two worlds remained separate.  

For Liam the choice to participate solely in the Deaf community would have removed him from our community, from our friends and family, from the people we interact with daily.  And as his mom, I wasn’t ok with that.  Many years ago, before technology and organizations designed to help hearing parents learn ASL, many hearing parents of deaf children had no choice but to give up their kids, allowing them to be raised in boarding schools for the Deaf, or with other Deaf families.  I cannot imagine that excruciatingly difficult decision and I am thankful to live in an age where I didn’t have to make it.  I’m not trying to “fix” Liam but I am giving him access to the world I know and love; the same way a Deaf parent who exclusively uses ASL is doing for their child.

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At the airport on the way home I struck up a conversation with two teachers of the Deaf who had attended AG Bell.  They asked me what I thought, as a parent of a deaf child, of the protesters.  I explained some of my thoughts without going into all of it.  And when these two teachers shared their frustration on behalf of the parents of their students, when they started to make the protestors out to be the bad guys I was hesitant to join in.  I truly can understand their perspective.  AND I am truly confident in ours.  And I suppose that is what peace with your decision feels like.  I didn’t need to fight back, to defend our choices.  But I also didn’t need to follow theirs.  We’d made the right choice for our family, even if at the time it didn’t feel like a decision so much as the next right step, and I had no regrets about it.

First Day

Liam Thomas.  First Grader.

This day has loomed, large and significant, for many years.  The first day of first grade would be a milestone for Liam, more so than the first day of kindergarten.  I’d thought about this day many times over the years but always with the awareness that it was far off, a ways a way, in some future time and place I couldn’t really fathom.

And then suddenly, yesterday morning, it was there.

I marveled all morning at how relaxed our morning felt.  Liam slept a whole 30 minutes later than he’d been able to on school days in the past.  And we still had 45 more minutes to get ourselves out the door. I glanced at the clock while I made breakfast and informed Liam that if he was still going to Child’s Voice the bus would have already arrived by now (or maybe not- the bus company wasn’t the most reliable…).

After finishing his cereal and apple slices Liam asked if he needed to get his shoes on.  I said no, he had some time to play, to which he responded, “Oh yea!  RyRy, do you want to go play?” and they were off, scampering to some imaginative world of their own creation.

I didn’t feel anxious yet, taking my cues from Liam who seemed remarkably calm and normal about this day which was A Big Day.  The only indication he carried any nerves about the day ahead had come at 1:30 am that morning when he came to my side of the bed weepy, claiming he couldn’t sleep.  I puttered him back to his bed and then climbed in with him, wordlessly wrapping my arms around him and holding him tight, an attempt to squeeze the anxiety out of his little body.  I lay with him until he was almost asleep then nuzzled his neck and slipped out of bed, saying another fervent prayer for a good day.

But now, as we ate breakfast and got dressed he seemed cheerful and excited about the day ahead.

We took our obligatory first day of school pics.  And then, with my mom at home to watch the girls, we set out to walk to school.

After years of taking a bus 45 minutes to school each day a 7 minute walk feels like a luxury.  He held my hand while we walked, not yet too cool for such displays of affection.  While we walked I felt the significance of this day begin to settle in me, a heaviness in the pit of my stomach.  I tried to understand why this felt so big.  It was not the full day aspect of first grade; Liam has been attending 7 hours of school daily since he turned three.  I wasn’t worried about his teacher or the academics; his teacher knew the ins and outs of Liam’s hearing loss and Liam himself was more than ready for first grade.  Was I worried about the other kids?  Worried that some brat would make fun of “those things on his ears,” a scenario I’d previously never had to contemplate as all the kids at his school had things on their ears?  Maybe, but first graders weren’t yet cruel really.  Maybe by third or fourth grade we’d need to steel ourselves for that.

As we got closer to school Liam got quieter and his grip on my hand a little tighter.  By the time we’d made our way to door 7 where all the first and second graders lined up to begin their day I saw the anxiety on Liam’s face and knew it mirrored my own.  It was the newness of it all.  For the first time in five years we were at a new school, a place we didn’t know, with people who didn’t know us.  And because we were jumping in a year later it felt like everyone else knew the drill but us.  

Liam and I found the 1H line.  I tried to step back, to let him stand in line with the other kids alone but he reached out for my hand, a panicked look in his eyes.  And so I stood next to him as his eyes darted around.  I could practically see the fear and anxiety levels rising in him and his brain tried desperately to figure out what was happening, what he could expect, what he needed to know.  

I thought about how anxious Tommy got at the zoo on Sunday when I asked him to refill our zoo cup at an unfamiliar location, recognizing how similar Liam is in new settings.  I knelt down and told him not to worry, it was everyone’s first day and no one knew exactly what was going to happen next.  The teachers would tell him what to do and where to go.  He started blinking back tears then, and I knew my words had touched on a point of anxiety for him.

His attempts to fight the tears that were threatening to push through was all it took to pull my own out.  And there we were, blinking back tears, desperate to appear as though we were not about to lose it in this crowd of moms and kids all more ready for the first day of school than we were.

I wanted to shout, “I’m not a crazy over-protective mom!  This is not a normal first day of school for us!  This is a BIG deal!”  But again, I couldn’t quite articulate in my own heart why this felt like such a big deal.  

But it did feel new and scary and big.  He felt like a pioneer, charting new territory: the first deaf kid the school had ever had.  Would the kids be nice?  Would the teachers know what to do?  Would he feel all alone and lost, unable to advocate for himself?

Rationally I knew the kids would be so kind, some already were.  I knew there would be a learning curve with the teachers but that they also wanted to do right by him.  Because he was the only one with hearing loss they weren’t going to let him fall through the cracks.  And I knew his old school had done everything, and I mean everything, to prepare him for this moment, for the moments to come when he’d need to advocate for himself.  He was ready.  And I was too.  We just didn’t know it yet.

And so, with tears in both our eyes and hugs and whispers that it was going to be awesome, that he was going to be awesome, his teacher led his class into the school and I watched him go.  I walked off by myself and let the tears fall freely, calling Tommy to unload my anxiety about our boy.

By 3:30 we were all more than ready to see Liam.  Tommy had come home early and we stood, double stroller filled with little sisters, waiting at door 7.  Liam rushed out, scanning the crowd for my familiar face.  I caught his eye and he came hurdling towards me arms out.  After a big hug that brought both of us much needed relief I asked him how his first day of first grade went.  And he said, “It was awesome!”  

Which was all I needed to hear.  We survived our first day.  And it was awesome.

Good

My husband’s dearly loved uncle passed away last month.  Yesterday the family gathered to celebrate his life and mourn his passing.  Uncle Byron died at the age of 82 leaving behind a beloved wife, three devoted children and seven incredible grandchildren, not to mention the rest of us, siblings, nieces and nephews, cousins and dear friends. 

Uncle Byron was one of a kind.  I heard tales of Byron before I’d ever actually met him.  My friend Casey babysat for Byron and Carol’s next door neighbors in high school.  She described the older man that lived next door as “hilarious and also inappropriate,” which could have been his tagline: Byron Powell: hilarious and inappropriate since 1934.  Years later I would end up marrying his nephew and would have the privilege of calling him Uncle Byron.  My kids called him Papa Byron.  

He was warm and funny, welcoming and kind.  He worked hard and served his church and community.  He was loved by everyone who knew him.  And he was playful, goodness he was playful.  Byron had a giggle that was infectious and he was the kind of adult that never lost his childlike heart.  He played games and poked fun but always with love; if he teased you it made you feel like you were in, one of his favorites, loved.

When we moved to Wheaton, the town where Tommy and I grew up and Uncle Byron still lived, I loved running into him more frequently, seeing him multiple times a week at the Sports Center, the gym we both belonged to.  Sometimes, if I was lucky, I’d catch him on the track and we’d walk a few laps together, catching up on life and whatnot.  He was dear to me and I had a special soft spot in my heart for Uncle Byron. 

So many lovely things were said at his service but a common theme surrounded his very goodness.  His son Dave spoke about that word, “good” and it’s underratedness.  In today’s age of overselling and exaggeration the word good often goes unappreciated.  But that was exactly what his dad was, good, and the life he built the same.  I couldn’t have agreed more.  Uncle Byron was good, a good man, a good husband, a good father, good brother and uncle.  

For me, that word good reveals so much meaning behind those four letters.  Good has depth and richness.  To be good is to be honest and trustworthy, sturdy and true.  Good makes selfless decisions and loves long and well.  Goodness goes down to one’s core.  It is not a quality that comes and goes depending on the situation; those whom we call good live it deeply and in all circumstances. 

Uncle Byron was good.  My dad was good.  I hope I am writing a life with that kind of goodness.

When a good man like Uncle Byron dies I am reminded again of my deep appreciation for those people who live their lives the way Uncle Byron did.  He was kind to those around him.  He gave the best parts of himself to his family and friends.  He drank deeply from the well of joy and enjoyed the hell out of life.  He left a legacy of love and connectedness.  When the world tells us that prominence and success, prestige and money are the things that matter, I only have to look at a life like Uncle Byron’s to know that it’s a lie.  Goodness, love, family, connection.  These are the things that matter.  

Uncle Byron helped to build something beautiful in his lifetime and last night, as all the kids, grandkids, nieces and nephews, and great-nieces and nephews gathered, I witnessed it in all its glory.  Uncle Byron was good and he built a life that reflected that goodness.  And we are so lucky to have been a part of it.

Well done Uncle Byron.  You will be missed.

Five Miles

I’ll never forget the first time I ran five miles without stopping.  I’d started training for a marathon and five miles was the baseline I was supposed to get to before official training with the team started.  When I sat in the hotel meeting room for the Team In Training informational meeting three miles felt impossible.  (Hell, a mile felt impossible.  I was the girl who regularly tried to get out of the one mile run in gym class- and was successful on more than one occasion.)  Five seemed about as hard as 26.2 and so I knew, somehow, if I could get myself to five, I could get to 26.2.  

So in the weeks before the marathon training officially started, I started running.  I did most of it on the treadmill at the gym because these was the days before gps on phones and the ability to know exactly how far you’re running.  I had a rough idea how long New York blocks were but I wasn’t completely sure.  On a treadmill I knew exactly when I’d hit the mile mark.

It was a Friday summer night and I was at the gym attempting to hit the five mile mark.  I know, I know, I was 23 and living in the greatest city in the world and I spent my Friday night at the gym.  I never claimed to be awesome.  Anyway, that night, on a treadmill at a New York Sports Club I ran five miles without stopping.  I don’t know if I’ve ever felt so proud of anything in my life, and I have four kids and a Masters degree.  And I can rap the entire Fresh Prince of Bel-Air theme song.  

I remember walking out onto 23rd street a sweaty, red-faced mess.  As I stood at the crosswalk waiting for the light to change it took everything in me not to blurt out to the man next to me, a young, kinda handsome business type on his way home from work or maybe a happy hour, “I just ran five miles without stopping!  Five whole miles!”  As it was I’m pretty sure I had a ridiculously goofy grin on my face that I could not temper.

The sense of accomplishment I felt that night was guttural.  I’d run an impossible seeming distance.  Before that i’d shuffled through two, three and four miles feeling terrible pretty much the whole time.  That night my muscles ached and my breathing was still heavy but I felt better than I’d felt…well ever.  (Up until this point my physical fitness feats involved, well, trying to get out of running the mile in gym class)  I was proud of my body in a way that I’d never experienced before.  It had done something my mind wasn't sure it could.  It achieved.

I recently started running again.  I’m not 100% certain, but I think the last time I was running any significant amount was five years ago.  Since then I may have done a mile here or there (in between long stretches of walking), maybe a 5k once (during which I wanted to die the whole time).  For whatever reason I recently found myself shuffling around the track at the gym trying to see how far I could go without wanting to kill myself.  At first it was a mile (thanks to the Hamilton soundtrack), then two and three.

Last weekend I ran five for the first time in years.  In the past few weeks I’d gotten myself to a comfortable three and four felt like an accomplishment.  After a rough couple of days potty training Lou (again) I needed the stress relief.  I set out to do five miles.

The temperature was pretty perfect and the prairie path had just the right amount of shade.  I listened to someone’s best running songs playlist on Spotify and felt pretty great for miles 2-4.5.  The last half of a mile involved a lot of motivational self talk (you can do this!  You are going to feel so great when you are done!  Don’t stop!) and when the woman’s voice from my Nike Runner’s app proclaimed “five miles completed” I found myself feeling almost as proud as when I’d stood on the corner of 23rd and Madison all those years ago.  

My body has done a lot these past few years.  I’ve grown and birthed babies and then sustained them for a year.  My weight has yo-yoed back and forth with each pregnancy while running, muscle tone and the like have taken a back burner.  It felt good to do something physical, to meet a milestone, to accomplish.  My body did something this weekend my mind wasn’t sure it could.  It achieved.  And I’m maybe more proud of my 33 year old body for that achievement than I was of my 23 year old one.

Things that are Saving my Life Right Now...

It’s the little things guys.  Liam has been home from summer school for a week and a half and it’s amazing the shift that adding one more kid to my day can bring.  I mean, it’s just Liam and he’s the easy one!  (Although he is also the kid that lit five matches while I was nursing Rory and then tried to lie about it, so…. there’s that.)  And this shift isn’t even necessarily bad, it’s just a shift.  There are some great things about having him home.  Slower mornings, more time with the kids occupying themselves in the basement and not crawling on me demanding attention, more fun outings because we’re all home and we’ve got a Summer Fun List to tackle.  But it’s that last one that is causing a little strife because I’m getting nothing done.  Which is fine, (again we only have a few real weeks of summer with all the kids home, I shouldn’t complain) but I’ve got to be real intentional about building in some sanity saving things because I’m not getting to the gym nearly as much as I’d like and my quiet afternoons with everyone napping for 3 hours are a thing of the past.  So here are some little things that are saving my life currently.

1.) Setting the coffee maker up the night before and putting it on a timer.  

Waking up to fresh coffee is the best.  I don’t know why I ever stopped doing this.  Just loading the coffee maker the night before makes my mornings better, but that extra step of setting the time so that now, every day at 6 the coffee is ready.  Amazing.

2.) Getting up at 6.

Five Years Ago Colleen would have peed her pants laughing at the idea that getting up at 6am was anything short of terrible (and that is saying something because Five Years Ago Colleen only had one kid and didn’t pee her pants laughing/sneezing/coughing on the regular).  I am not what you would call a morning person.  But that little (or sometimes giant) act of giving myself an hour before the kids get up to read and drink hot coffee while sitting cozy in bed can change my whole day.  For those of you like FYAC who think getting up early is for chumps, the trick for me was waking up but staying in bed.  I hate getting out of my warm bed in the morning and that’s probably the number one thing that prevented me from getting up.  Now, I keep the books I’m reading on my nightstand, slip out for 30 seconds to pour myself a cup of coffee, get back in bed and begin my morning.  It’s seriously the best.  It’s quiet, I’m cozy and I’ve got my coffee.  It feels like I’m at a hotel on vacation every morning (until 7am when the beasts awake).

3.) Running

I’m running again.  Which I really haven’t done with any real vigor in three or four years.  The Hamilton soundtrack is what jumpstarted my running again.  I could listen to that and forget that I was running and wanting to die.  I got used to running with music again so now I’ve branched out to my playlists.  Previously I’d run while listening to audiobooks or podcasts.  I didn’t realize how much having a good beat helped me run.  I feel better when I run while listening to music.  And now that I’m doing that, I’ve stumbled upon the only time in my day when my mind can wander.  I can’t scroll through Facebook or Twitter (which is super depressing these days, ugh election season and TrumpAnxiety) and I’m not focusing on a podcast or audiobook (which is what I’m listening to any other time I’m doing busy work).  It’s a lost art, this mind wandering.  Doing it a few times a week is saving my life. 

4.) The Hamilton Soundtrack

You guys.  I just can’t even with this soundtrack.  You know how the world feels really crazy right now and people, presidential candidates, are saying things that make your skin crawl and you wonder if we’re ever going to make any social progress again?  Listen to the Hamilton soundtrack and renew your faith in humanity.  It’s the smash broadway musical that tells the story of Alexander Hamilton and the founding fathers but instead of being 100% showtuney it’s mostly rap and hiphop.  The show uses only people of color in the roles and it’s amazing to think about this story of our country told with minorities.  To see how the struggle our founding fathers faced is still relevant to so many groups of people today.  And to give the power to tell that story to people who don’t often get to do that.  It’s amazing.  I can’t stop listening to it.  For a while it became an ear worm and I couldn’t get it out of my head but even then I didn’t mind.  It’s so good.  Also, I’m going to see it in November when it comes to Chicago.  I have the worst seats, but I don’t care.

Those are some things that are saving my life right now.  What about you?  How are you surviving summer?