I can’t predict my tragedies
I can’t defend proclivities
I may be able to say what is
That which I may never give
Over to those who wish to seize
The broken and battered memories
Of times remembered forgivingly
And dreams abandoned hastily
I don’t suppose it all is fate
But neither do I presume it ain’t
My whiteness lives outside of me
While I forever fail to see
Visions of those looking back at me
They fed my ego and took my most
Not for me said I and gazed
On such a life so filled and glazed
So much obscured the many signs
The world was tilted to me and mine
Now I wonder will I wage
The wars for justice I don’t engage
Author: joejmedler
The 7 Parents You Meet at Kids Birthday Parties!
The boom of the ‘Birthday-Industrial Complex’ is among the most under reported developments in child rearing in the decades since I was reared. The strip malls that seemed to pop up out of fields and abandoned lots when we were coming into our own can no longer sustain the retail markets that augured their construction. So, there it was. Open spaces, high ceilings, a dying market driving down rental costs. A vacuum waiting for something to emerge to productively use this formerly valuable space. Some genius came up with the idea of inflatables, kids parties and Ice Cream cake.
Well, this little history of the rise of the bounce house economy is all a little precursor to say damn, ain’t it crazy how many damn birthday parties you end up navigating on so many Saturday and Sunday mornings, afternoons and evenings now. It’s worth a double damn. I was at our local house of bouncy fun for dinner on Saturday and lunch on Sunday this past weekend.
It’s a strange ecosystem, the class birthday party. Clearly these are many of the kids your kids will be growing up with. More pressing however is the parents. The kids occupy themselves at these events quite naturally. Its us parents who have the true dilemma of figuring out how to be around others.
Maybe it’s not everyone. Maybe it’s just me who finds this so exceedingly forced and awkward. I’m pretty sure my own discomfort is projecting outward and making others uncomfortable. I mean, I have to look pretty sketchy, avoiding all eye contact, standing away from everyone, thinking I should be social for my kids sake then hovering around conversations I’m not meant to be a part of. It’s so awkward.
Here are some of the parents you will see at your kids friends birthday parties.
THE GHOSTER – You may never see this dad or mom. They would prefer to simply slow the car down and have their child tuck and roll onto the sidewalk and into the fun of the bounce house. Most at a minimum stay long enough to sign papers ensuring they won’t sue if there is an accidental dismemberment. Next time you see them is when the lights come on after the birthday boy or girl has blown out the candles. Or shortly thereafter. Or shortly after that. NOTE: Given any inkling that it is acceptable to disappear for the duration I am this dad.
THE HIGH STYLE PARENT – It is Saturday, late morning. Either you haven’t slept and look remarkably put together considering you’re wearing the same clothes you wore for date night last night, and it was like anniversary date night, a round number no less, or you have put a lot of effort in to looking good at the strip mall bounce house hut. Also I’m suddenly made hyper self conscious by my laughably dated, though equally imperfectly fitting cargo’s and maybe I should have skipped the Crocs. Yep. I’m that dad. I apologize for many things, but not comfort. It’s my prerogative as a middle aged dad.
THE LURKER– Standing at the outskirts, watching his kid nonstop, avoiding any and all contact with the other parents. This is always a dad in my experience, but I’m sure there are some moms as well. Just drifting to zero population centers in the grown up sections. I am this man though I’m getting better.
PTA PARENT – You know the type. The one who has followed through on all those things we say we’ll do when our kids get into school. This parent is pretty typically very nice and I’m thankful when they approach with a topic to discuss. I am not this parent. I may judge this parent silently as a defense mechanism as they are doing it right, which highlights my shortcomings.
OVERLY ENTHUSIASTIC DAD – This guy. You know this guy. ‘He’s just a big kid!’ is something someone who was likely annoyed with him said once and he has since taken it on as his identity. He is way too much. Sucks that my kid can’t stop talking about him and how awesome he is. I’m not jealous.. You’re jealous!
THE HOVERER – This parent is on the opposite end of the spectrum from The Ghoster. They are in a constant state of risk assessment and periodically intervening to avoid certain calamities that never happen. I know some of these folks and there hearts are definitely in the right place. Their anxiety, however, can run interference.
SCREEN DEMON – Finally. My tribe. We are determined to avoid interaction with any adults. We are Facebooking, Tweeting, Snapchatting and Gramming all while determinedly maintaining a scowl that tries hard to say, ‘this is very important work I’m doing. Important and private. I’m sorry I can’t talk, but me and my phone are saving the world.
Pick your strategy wisely folks! You may just have to maintain this personality for the duration of your child’s schooling!
Loving and Learning
When love shows up it overwhelms everything. It is a feeling that inspires and compels you. This love is an animating force that propels you, like a stitch in time, forward. Before you know it you awake somewhere new. Somewhere you never knew you were going despite being present at every turn, nominally at the wheel but largely along for the ride that Love takes you on.
It can be disorienting and for moments it can even leave you feeling disconcerted. I felt that way at times. Felt like I’d been taken for a ride and dropped off somewhere where I didn’t know anyone, especially me. At first it’s so filled with passion, so unavoidably overflowing with pleasurable experiences. Laughter can start to feel the norm. Warm comforts come to be expected and endless days of countless indulgences start to feel like a promise. One that you think is being made to you by the other person in the room. You make those promises in return because who are you to stop the train.
Before long the obligations come. The money. The time and effort. The constant availability and eager setting aside of preference in order to please the other. It can start to weigh on you, but neither of you are ready to stop. You feel like if you do, if you change priorities, introduce self care and individual preferences and dreams and goals you are failing each other. Or worse, you are failing at love. But you aren’t. Not at all. Not by a long shot. You are incorporating yourself into the equation, the parts that love didn’t render meaningless. Perhaps the parts that love will in fact enable, nurture, even treasure so long as you can reclaim them.
Then the kids arrive and my understanding of love was both refined and expanded. I learned a kind of love that exists in my soul. An immutable version that will never, can never die. A version that commands my presence and I delight in giving it endlessly. It demands my efforts and I give them unquestioningly. It taught me that the only way to sustain feelings was through doing. Love is a verb. it’s true. At times I can choose without even knowing, to stop making the effort it requires of me and when I do I thank my lucky stars that my wife has the patience to wait for me, the committment to look for me and the willingness to love me when I don’t deserve it. It sounds worse than it is. It’s just a distance or a pointed aloofness in our interactions, but I assure you it’s not pleasant.
Then, for no reason I can think of, I see it. I see that I’m failing love and failing her and failing me and it passes. I commit to being present. I commit to loving actively and our love picks up where we left off. Sometimes it’s her. Sometimes its me. Often its both. Whatever, it’s us. We’re in it together and we wouldn’t have it any other way.
‘I Like That I’m Weird’
‘Tell me something you love about yourself. What is something about you that you really like.’ his mommy asked.
‘I like that I’m weird. I like ‘small potatoes’. I know it’s supposed to be for little kids, but I like it anyways. I like that I’m weird like that.’ Charlie said.

When Karen came down from putting him to bed she could barely contain how excited she was to tell me about this little conversation. She was right to be excited. I couldn’t have been happier to hear it.
‘I like that I’m weird.’ How great is that?
Getting comfortable with my weirdness is something that’s taken me a lifetime. First step for me was seeing that I was weird and trying with all my might to deny/hide it. Since then, since getting to a place where I passed as a normal I’ve been working like nobody’s business to try to unburden myself of my various insecurities and collected disguises. I needed to conform, emotionally. I needed to fit in first. It left me safe and sad. Once there I needed to get back out, which was harder. It was definitely harder to reclaim my ‘weird’ than it was to fit in.
So to hear this news, well, I just wanted to wake him up and tell him how proud I was of him. I wanted to tell him he’d discovered the secret to happiness. I wanted to tell him that loving things you aren’t ‘supposed to’ is something it took me forever to learn to do and longer to be comfortable saying I loved those things. I was so impressed with him. I wanted to open YouTube and start playing endless episodes of ‘Small Potatoes’ with him.
Furthermore I wanted to tell him that his life would forever be better as long as he is true to himself. If you like sports and that’s not weird, so what, it’s true. I guess that’s it. I felt shame around my weirdness. Still do from time to time. Then I come here, I tell on myself and I learn to get comfortable being me. My weird self. My journey is as much about meeting me as it is about meeting the world and he has a moment now, one he can call back on and know, being weird, feeling different, it can be a huge gift!
I love my little weirdos so damn much.
Surviving My Kids Friends Birthday Parties
I was sitting in a room full of 5 and 6 year old’s and their parents this past weekend. We were at one of Charlie’s friends birthday parties. It’s remarkable how much a 6 year old’s birthday has changed since I was a kid. Perhaps I went to one at a McDonald’s once. I don’t think I went to all that many kindergarten birthday parties. If I went to 5 that would seem to be a lot. Now we’re busy like I was during the summers of my late 20’s when I was traveling every weekend to weddings of friends and family.
This was our second birthday party in as many days from this one kindergarten class and it was at the same location as the first. It was one of those former retail spots made over as a kid-party factory, complete with monstrous bounce houses and inflatable slides. This one was particularly cool as it also had scooters and floor projected interactive video games. Ultimately a perfect place for a couple hours of fun. He loved it.
I also, of course, loved that he loved it and was super appreciative of the family hosting it for giving such a fun experience to our boy. But it’s an awkward place for me. I’ll write more about that in a short while, I’m sure. It’s really worthy of milking for some laughs when you see me, a 43 year old dad to two, so socially petrified that I’m stuck staring at my phone trying hard not to look creepy to all the other, seemingly more socially gifted parents sitting in small groups chatting away. It’s just strange. And I’m not the only dad to end up this way at these things. So UNCOMFORTABLE. But like I said, you’ll get some laughs out of this in a future post, I hope.
Back to the room of kids, eating pizza and drinking juice. They sit there so confident. I recognize this confidence. It’s not social confidence. By 5 or 6 you start to see some self awareness and self consciousness start to sneak in as they observe there classmates and occasionally wonder if they are doing it right. Whatever ‘it’ is. No. This is the confidence in exactly what is shaky inside me. Confidence that those grown ups, as present and attended to as the muffled and ignored teachers and parents in the old Charlie Brown cartoons, are all knowing, never wavering, able to know exactly what to do and how to do it. It’s a blind confidence. Never questioned or examined by the kids. Its exactly the opposite of what I feel at the moment.
Should I sit down? I should sit? Shit, did I make the mom sitting next to me uncomfortable? I should introduce myself. Shit. Of course I just introduced myself to the woman I exchange pleasantries with everyday and of course we know each other. I should stand up. Shit. Did she take that the wrong way? Do I, do we have an enemy now? I’m not eating. Damn it. Should I stand by the wall or hang by the door. I just don’t want to look like a creep and everything is making me look that way. These are my thoughts while my child sits there, assured and confident because I, who knows all and controls all, is present.
I don’t know how all the other parents feel but I have to imagine I’m not the only one that has these moments where it all becomes so clear. We are all doing the best we can. It’s a blend of planning and reacting. It’s a combo of following in footsteps and improvising. It’s intuitive and learned. We all want to do well. There’s never really a time when you know whether or not you are. You win moments, sure you handled something perfectly. Those moments are followed by other moments and that goes on forever.
As much as anything this makes me realize how much of my own life was and to some degree, will always remain a fabrication of my own misunderstanding of what my parents were and what they were doing. And there parents and there parents for as far back as we go. Structures we rely on make it possible and we’ve been fortunate enough in recent generations to have stable structures. It’s hard not to feel a little off balance when so much seems so fragile.
Before I know it Charlie’s asking the nice lady in the party factory uniform for seconds of ice cream cake. Some folks are leaving, getting gift bags, saying thank yous and finding coats. I’ve actually had a nice conversation with another parent, a mom of one of Charlie’s good friends. Everything is back to normal. I know my script and am ready to dad.
‘Yep, time to go, buddy. Did you say thank you? Don’t forget to say Happy Birthday.’
‘If You’re Gay…’ on Mamalode
I worry about what will happen when my kids aren’t so comfortable sharing every thought with me. Some of that is natural and a part of the process of growing up and growing out. A part I dread for many reasons, most of them regarding me and the nature of that life change. But there are small things that worry me and I want them to know where I stand.
Read my story today on Mamalode.com
My Sister

My earliest memory of my sister was of a man coming to our house to speak with my parents. He was there to see if our home was a stable one. One where my sister would be welcomed and provided for. One where she would not only be safe, but hopefully nurtured and loved. I remember my mom essentially asking me to be on my best behavior before they arrived, but who’s to say whether or not that actually happened. I was, after all, just 6 years old.
I didn’t really understand why we were getting another sister. I had 2 already. There were 3 of us boys. I don’t think much of an effort was made to explain it, but that said, I have a six year old now and it’s remarkable the things he doesn’t hear us saying and the things he does. Maybe there was a giant family meeting. Maybe it was just the few words of encouragement to act normal when the interviewer came over to meet us.
Maya Lin (this is the name of the designer of the Vietnam Memorial and I will be using it in place of my sisters name in this post) was a teenage girl from Vietnam and we were a very big and ever growing family of white, suburban, Great Lakes style americans. We must have been quite a shock to her. Tall, pale and rembunctiously carefree. We were loud and curious, bold and kind. We were a station wagon with wood paneling kind of family who couldn’t have been more American. I can’t for the life of me, now, imagine what it was like for her to be dropped into this story as a young girl. At the time it never ocurred to me to wonder.
I was not all that welcoming. It’s just not a strength of little boys. I argued with her over the TV. A lot. To my memory my mom always sided with Maya. I was always cordial in screaming about how unfair it was and storming out of the room. I was a real charmer back then. Before long she acclimated. Never has more been swept aside in so short a time as me brushing past the acclimation process. But what can I know. She was plopped down into a new home and made a member of a new family in an instant. It was never questioned, never fretted on. Not from our side, my side at least.
Sure, my mother will tell you, if you ask, about that time, about her incredulous reaction to seeing snow fall, a thing she’d come accustomed to in no time as we lived in the 3rd snowiest city in America according to the video I watched on Facebook yesterday. It was from The Weather Channel and it meshes with my memory and the common understanding of where I’m from. She’ll tell you about how she had to have the TV to watch Soap Operas, a thing that was banned in my house for the wild disregard for moral behavior, to learn the language. My mom, and I don’t know how she figured this out, showed her these shows because all the characters spoke slowly, they over emoted, they spoke directly to the camera in close up and they repeated themselves over and over. Minus the horrid personal behavior, they were ideal for teaching the language. The other favorite was West Side Story. Musical theater courses through both sides of my family and while the appeal of this was lost on six year old me, the effect for language acquisition was also helpful. And she flat loved West Side Story. Mom would also tell you of her struggles acclimating to school and the challenge it was for her in that short time before she got the language down and made a friend or two.
I’d tell you about the new smells that as a 6 year old I thought were horrifying. This shouldn’t shock anyone who’s ever had a little boy. I had to leave the room the other day because I was eating a banana and this was just too much for Teddy to handle. In my case it was the smells of the food that I now realize I really missed out on. My palate has grown in sophistication since then and at this time when half my calories comes from cough drops and the other half comes from cold, discarded, nuggeted meats it feels like a real missed opportunity. Then there was the smell of bad overboiled hot dogs coming from the bathroom when her friend came over. It was just a home perm, a thing a thousand teenage girls that year did in my town, but none lived with us. My older brothers were yet to pull the trigger on the home perm.
Whatever her experience I can’t tell you. But I can tell you that it was a fully family version of growing up. It was sadly not the ideal version of family that was taken from her. But it was a very loving one she made her way to and became a part of. And because she did I learned of the small but thriving Vietnamese community where we went to shop with her. I saw the food from all over the world I had never imagined existed so close to me. I learned the look of government issued, self enveloping, light blue international letter paper that allowed her to get what I think were censored letters from her family in Vietnam. It taught me that I could love her in all the same complicated ways we all love our individual family members. I remember being sad when we dropped her off at college and happy when she could and would come home for holidays. I remember missing her way of eating, a thing you don’t think can be different, so different before you see it. I remember feeling like something was missing when she wasn’t there and feeling like we were all home when she was.
Our whole family was growing as this all took place. We were adding new members and each of us growing as well. By the time she was done with college she had a boyfriend. A Vietnamese boyfriend. I was 16(ish) and we were now 6 Medler’s (My youngest brother was born in 84) and everyone that would be a part of our family had arrived, to one degree or another, by this point. Whether it was right after college or a few years later her boyfriend eventually asked her to marry him. She said yes.
The wedding was to be in King Of Prussia, just outside of Philadelphia. I don’t know why, but I think they were living there at the time. She worked at a bank, I know that much, but honestly, she could have been president or a part time teller. Regardless I now look back on her asking me to be in her wedding with immense pride. It’s a real honor that she thought of me. I’m afraid at the time I was not so gracious. I said no. Yeah. I was also from a family where they respected my right to do such a thing. I’m sorry I did that. I’m incredibly thankful that they also asked my older brothers, both of whom have been and remain far more gracious in such matters.
Well, shortly before the wedding, and I mean very shortly, one of those government issued, self enveloping, light blue international letters arrived to alert Maya that her whole family was being released (had been granted visa’s.) I can’t begin to imagine how this felt for her. She hadn’t seen her mother and father and sisters and brothers since leaving. They hadn’t seen her since she was taken away. I can’t get into details I don’t know, but I know that what happened in the time between her leaving home and arriving to us was scary. She was made to leave in a moments notice and she was in a camp for some period of time. There were long periods when she was cargo on boats with no place to go, having no idea what life would hold if there was a future. She experienced and endured, as a teenage girl, innocent and surely terrified, things I know I never would have endured. But now she was here. My big sister. Annoying and loving. My honest to god sister. All the while waiting and hoping she could see her family again.
They would be arriving in a short time and once there the wedding would be in a matter of days. I remember us all, now in a minivan, making our way from Brockport New York down to Philly and checking into as few rooms as were reasonable for our large family, and getting dressed in our fancy duds. Mike and Eric in their tuxes and I in my Don Johnson whites (it was the 80’s) and my sisters in their best. My parents were old pros. They left enough time for us to woof down some happy meals and such in the parking ot of the McDonalds before heading over to the wedding, where all the food would be stuff our sensibilities hadn’t yet caught up to. I’m sure they were traditional Vietnamese wedding foods, but we weren’t really the traditional Vietnamese wedding goers. Not by a long shot. My Abraham Lincoln looking father matched old Abe in every detail, even height and frame. 6’4″ and slender, of Irish and Finnish descent. Still, we were there, her family. We weren’t in the front row, as that was for her Vietnamese family, but we were ushers and pasrticipants, those of us wise enough to recognize and accept that honor. Again, very sorry.
Anyway, there I sat, a foreigner in my homeland at a joyous celebration for my sister and her new husband. The ceremony was in Vietnamese and we knew to follow along. Our little league of nations pew at the church each weekend was one that taught us how to be attuned to ritual and cermony and this was no different. Just a different language. I remember looking back as the music started. My father and sister emerged, arm in arm. They walked down the aisle, she a bride and he her dad. It was beautiful. When they got to the first pew my father stopped, removed his arm and kissed her cheek and handed her hand to her fathers arm who took her the rest of the way and ceremonially gave her away.
I can’t imagine what this was like for her Vietnamese family. I can say that a lot of what I now see as extraordinarily meaningful was not so profound in the moment. I didn’t realize it all, what it all meant at the time. I’m discovering layers even as I write it here.
Our lives take on different meanings as they beat ever forward. Contexts and understandings change as we do. I know that my sister was meant to be a part of my family. It may not have been predestined, it may have come as the result of wretched circumstance. But in the end the love that we had, that persists to this days as we are all flung far and wide is something I’m so thankful for.
Fathers and Suns
Day in and out
Of love and pain and laughs and tears
And I fall for every prop
You look at me for all
As if I caused the sun to shine
Told the moon to rise and sparkle
Were it asked you’d say
I was the one. The one.
Who dragged the moon to the sky
Who put the sun to bed
Who rose at dawn to wake the world
Shook it out of bed
I won’t abuse you of this thought
Or fail it while you carry
A necessary delusion that keeps us all merry
That makes me large enough to carry
The love and pride and fear and worry
That you alone have brought
I warrant a giants space
A gods all knowing visage
With all the pride and love you give me
The illusion won’t stand forever
Soon you will discern
That who you thought were mighty
Were little but concerned
And eager and bemused
Agobbed at what life wrought
As soon as you arrived we knew
The gifts that weren’t yet bought
The truth that we disguise
Is evident to other eyes
To any looking at you and the grown ups who can’t catch up
While you labor in a lie
One we all must cling to
The truth, it’s you not I
That we all revolve and cling to
You are the sun and we the earth
As much as we can figure
But if that’s wrong and you’re the earth
Than that should only figure
Of all celestial bodies it’s the moon that we must be
As the sun that shines and alights us
Is all that we can see.
Fallen
dismiss me I’m liberal
fault me for caring
about others and dreams
and nations and sparing
the lives of innocents
who fall below visions
of hawks and of monsters
and barkers of treason
you sling and slash
you shout of the demon
of fault that is falling
on those that don’t need it
you fire and fly
a flag of fallen heroes
but fail in your faith
never wanting for reasons to hate
alt white is leading
the nose of minor masses
to alt right leaders
contorting the language
to paint virtue of evil
and claim it is raining
the rain that is washing
their dominance away
not right not alt not white not all
but wanton and craven you hasten the fall
of fairness for looting
the souls of the groundlings
scraping and striving
learning and wheezing
your winning and failing
and pushing weighted ideas
that once fell to the flag
the long ago beat them
now spreads them and hides them
behind bars of blood
letting you rule but not fool
not even each other
spraying hate without heeding
those words you ain’t reading
that told of a notion
once dropped will no longer
unite us but bite us
by virtue of group think
shouts and screams and hollers for fealty
to nation not notion
defeating the meaning
of something we once knew
worth striving to perfect
now can’t even muster
the unity to protect
The Lodge, Part V: Figuring it Out
‘I really love it. It’s crazy. I’m here with people from all over the world, we work around the clock and we get one day off per 13. It’s perfect.’ I said. I meant it.
‘Joey, I’m so happy for you. I’m so excited.’
‘Thanks. It’s just a lot, but I think I really like it.’
This was my first call home after the guests had arrived. After the week long, 9AM-9PM trainings we were all ready to get to it, whatever it was. Even with that much time spent learning, with that many people who’d done it before there was no amount of preparation that was going to give me so much as a clue as to what that first day would entail.
‘I got picked to be on the bus that went into the city to pick up the guests. It was crazy. Unbelievable how much could happen in so short a time.’

About half of us staff were selected to ride the bus down to the city that first day. It really was a good omen, even if I didn’t know it yet. I’d be prepping the busses and coordinating the drop offs and pick ups within a couple of years and would continue to do them for many years after. You really had to trust the people on that crew. Any number of issues could arise, between the guests and their anxiety or separation or some other totally unexpected thing having to do with their diagnosis to random cars breaking down in front of you in the Lincoln Tunnel, car accidents, staff walking off never to be seen again (this happened more than once, place could drive you mad), incidents between guests on the bus, anxious, angry or just plain mean parents (as a rule they were ALL lovely. As a rule. Rules are ocassionally broken), mixed up medication, short fuses, insane heat, torrential rain. Whatever we ran into, whatever ran into us, we were there to check in 60 or so individuals with intellectual and developmental disabilities, process their personal effects and account for them, ensure they were fully stocked with meds, check in money get them on the bus and start to entertain them and continue to do so, and to be entertained by them for two weeks, sun up to well past sundown. It really was the most amazing thing I’ll ever do. Having and raising kids will mean more, but we can relate to so many others who’ve done it. But this, this was a singular experience.
‘Guests?’
‘Oh, yeah. Thing is they aren’t campers really. They’re grown ups and face it, grown ups don’t go to camps. They go on vacation. So they aren’t campers, they’re guests.’
‘That’s interesting.’ Mom said.
‘Yeah. Not so much, it’s just what it is. You forget about the word after a day of using it. Not even when you hear it so much during training. Truth is I was ready to see some guests by Sunday. They got here, Sunday.’
I was already spewing my person first language, practicing my committment to treating people respectfully and in line with their life experience and not the way I had before those trainings, which would have still been sensitive, but wouldn’t have been mindful of age appropriate language. In real terms I have learned a hand full of things in the 22 years since that week of training, some real valuable things, but none of it will ever come close to what I learned in those two weeks. Two because the training really didn’t end until after the first week that you were putting it into practice with the guys.
The training wea almost all centered around the arts and crafts room that was off the kitchen, the dining hall and the administrative/infirmary hallway. It was painted grey cement floors with knee to ceiling roller windows lining the walls to either side of our rows of chairs we lugged back and forth to and from the dining hall between meals to reset our classroom all day every day. I was given basic, sanctioned safety trainings, by the book and repeated yearly or near yearly since. I was given first hand trainings on what it meant to work in a field that was still populated with residents and former workers at Willowbrook State School. I met some of those who transformed our entire service system, from the inside, from one fraught and underfunded, filled with systemic abuse into one that was so truly person centered that we busted our asses to ensure that every person was given every ability to choose every single activity on their own and we would modify everything to ensure they could do it regardless of ability. I learned what it was like to be a sibling or a parent of a person with a disability from one of those parents. I met some of the heroic figures who said no to Doctors in the fifties who told them to put their child with a disability in the institutions and forget them. I met many of those children who found their way, through decades of darkness, both literally and in every other way and emerged on the other side heroic and still in touch with their tender and delicate humanity which had been so forsaken. They taught me. And I soaked it up. I loved it.
And I wasn’t alone. There was a core of us who made it through and reaped endless rewards because of it. There were at root about 30 or so of us who worked in cabins, lived with the guys. We were on call all through the night and working every waking minute (save the one hour break you lived for in order to shower and make a ten minute call to whoever to say how amazing the whole thing was or to cry because it was breaking you). Of those thirty about 16 or so made it through the summer. My cabin started with the full allotment of 6 staff. We lost Ausberto and Jim the Marine and I can’t remember who else, but one more. We made it through 3, two week sessions with just me, Mike and Tony. A suburban, an urban and a comrade. We cared for and loved 16 guys in that cabin every day. Two in wheelchairs? No problem, everyone will have what they need cause anyone of us would push ourselves miles past our limits to make sure of it. Truth is we did it to gut busting laughter much of the time. There were moments of discord and hot tempers, but they were over fast. Still love those guys and dozens more and would have the time of my life sitting around a fire all night reminiscing on those days. I can say confidently we all would. I met real family there.
‘Joey. I’m really proud of you.’
It’s still the most important thing I ever hear them say. Whenever they do I just eat it up.
‘Thanks mom. I think you would love it here more than anyone.’
And I’m sure I was right. It was a utopian society experimentation lab built on the ideals I learned from her. Love, compassion, understanding, committment, service and tireless giving that results in you getting so much after giving all of yourself.


