Wednesday, May 11, 2016

A Father's Lament

Suitcase- check. Extra bag of clothes- check. Three boxes of diapers- check.

Elmo?

I can't do this, I thought, as I stuffed Elmo in the suitcase and sat on it to close it again. We have a long day ahead. Can't afford to cry now.

"OK, Matthew, get your coat on." I tossed it to him, he picked it up off the floor since his daddy's aim isn't that great and put it on. I heard a honk outside. Our ride was ready. It was now or never. I took one last selfie and turned towards the door. It was go time. And February 9th would never be the same. (Sorry, Marc.)

Car rides were never that successful, especially long ones. I was expecting Matthew to take a shot at me at any time. He didn't understand what was going on. For all he knew we were headed to the neurologist again, a ride that never went that smoothly. I buckled him into the van. Off to Toledo.

The Toledo ride went calmly. He hit himself in the head numerous times, but never hard enough to injure himself; it was almost as if the routine was programmed. Head hit to knee, head hit to window, hand to head twice, repeat. He didn't exhibit any acts of aggression to anyone in the car, although to be honest, had he belted certain people I wouldn't have stopped him. Do it, son. Commit acts of aggression that I could only get away with in my dreams.

He was a good boy. My good boy.

When we got to Toledo we had a meeting with accompanying paperwork. Matthew sat next to me, not crying, not getting upset, just holding my hand, trusting me. Don't trust me, son. Not this time. I don't even trust myself on this one. A dad doesn't abandon his son. I changed my mind, Matthew. If you want to come home and beat me up again I don't mind. I'll make it work, Matthew. We can go to Walmart again. I'll buy you your favorite cookies again. Just don't leave me, buddy.

We walked over to the building that would be his new home, and as we stood in his bedroom he took my hand and stretched it towards the door. He looked at me with a look that spoke volumes. Let's go home, Daddy. I'm ready to go now. I want to watch Elmo, Daddy. I want to have my ramen noodles. I want to go home.

I'm sorry, son.

I turned around to walk back to the van.

And when I returned to Elyria I wept bitterly.
____________________________________

We didn't have time to grieve the departure of our 16-year-old son. Our 13-year-old daughter was moving to Canton two days later, and we had to get ready. There would be time for weeping later. Oh Lord would there be time.

The process was similar. There would be a long car ride. And a long meeting, with paperwork. Rebecca didn't sit still for her meeting; instead, she walked around the table, smiling at everyone. She explored the house while we signed her away to the group home.

But there was one experience that remained the same. We showed her the room in which she would be sleeping, and when her back was turned so was ours. We left the house without looking back, got in the car, and cried.

This was our new normal. From two kids with autism, or two autistic kids, or however you want to phrase it, we now had no kids with autism, no autistic kids, no children with a disability which really wasn't a disability but a "different ability", just a different way of viewing life which didn't need a cure. Or so the blogs say.

I didn't care what social media said. I didn't care what the blogs said. They could go home and have their kids with them, bragging about them on Instagram, tweeting those little statements that were funny as hell, although as responsible parents your official response couldn't include laughter. They could celebrate their children's accomplishments, as well they should. A good parent should brag on their children. A good parent should post pictures of high school graduations and athletic events and every possible way in which that child made that parent proud.

I just wouldn't be invited to that party anymore.

"You're still their father", my friends told me. "They are still your children." And that's true... but life still wouldn't be the same anymore.
____________________________

It has been three months this week since Matthew and Rebecca went to live in group homes. In that time Matthew's behavior has changed so much that he has moved into a less restrictive group home. He doesn't assault anyone. He occasionally hurts himself, but not to the degree that he needs medical attention. Rebecca has lost a lot of weight. She looks beautiful. They both cooperate with those who oversee their care.

This has been the most difficult experience of my life. Being a father was that one thing I looked forward to being, the one thing I thought I would be good at. And I tried, I tried, oh Lord how I did try. I did my best, but I guess my best wasn't good enough. Cause here I am back where I was before.

My daughter should be on the couch right next to me, playing the same games on her Kindle over and over again, taking pictures of her legs, looking straight into my eyes with a smile on her lips and sunshine in her eyes. My son should be pulling on my hand, telling me that whatever I have to type can't compare to the importance of pouring that next round of Kool-Aid.

Instead, I type through blurry eyes, wondering if I could have done something differently. Yeah, probably not.

My depression is very real. The tears I shed are real. The hole in my heart, the hole in my life, the emptiness....

All too real.

Tuesday, March 01, 2016

Peace I give to you

(this one will win me some friends and lose me some others. So you've been warned.)

To Robin;

You don't know who I am. I only know who you are because you are Twitter followers with one of my friends on Twitter. I wanted to wish you peace. But first, a story.

I am a 49-year-old man. I come from a generation where men were "men", and women were "women". The quotation marks are there for a reason, because in my generation people generally lived according to the stereotypes of what men were and what women were. Sure, there were people who attempted to break out of the box, but there were far more people ready with weapons to shove them back in.

I grew up as a boy, and later a man, who identified with the gender I was born biologically with. I still do. But I struggled with the stereotypes of what a man was supposed to like and not like; how a man was supposed to act and not act. I wasn't a fan of race cars; I didn't care about weapons and who went to war with who; as I grew older I was more comfortable in the company of other women than I ever was with most guys. I still am.

It's a struggle to want to live a certain way yet be expected to act in ways that make people more "comfortable". I have two children, and damn do I love those two children. I would lay down my life for them. I've wanted children from my earliest high school years. Yet in my generation growing up it wasn't "cool" for guys to love children and want a family. A little more accepted now. But not too much or society look upon you as a perv.

It's a struggle emotionally to feel things that a guy isn't supposed to feel. My two children live in group homes now for developmentally disabled individuals. I regularly weep from the depths of my being for those two children. I feel a bond with those two children that most people think only exists between a mother and child. Yet I feel it. Deeply.

I can identify with struggle, but not with the struggles you may be having. But you are expressing yourself. You are living the way you feel inside, and I respect the hell out of that. I respect you, and I wish you peace. Please, live the way you feel. It is going to be hard, and there will be assholes to "set you straight". But ultimately you have to be comfortable with you.

I apologize for those of my generation who don't get it. But you are one up on me in that you have resources, and people around you who understand.

Robin, I wish you peace.

Sincerely,
Sean

Wednesday, January 20, 2016

Superunknown

Whatsoever I've feared has
Come to life
Whatsoever I've fought off
Became my life
Just when everyday
Seemed to greet
Me with a smile
Sunspots have faded
And now I'm doing time
Cause I fell on
Black days

---"Fell On Black Days"

We see you laugh
We see you dance
We take that away
Every day

We see you cry
We turn your head
Then we slap your face

We see you try
We see you fail
Some things never change

---"Head Down"

In my shoes
A walking sleep
And my youth
I pray to keep
Heaven send
Hell away
No one sings
Like you anymore

Black hole sun
Won't you come
And wash away the rain?
Black hole sun
Won't you come?
Won't you come?

---"Black Hole Sun"

If this doesn't make you free
It doesn't mean you're tied
If this doesn't take you down
It doesn't mean you're high
If this doesn't make you smile
You don't have to cry
If this isn't making sense
It doesn't make it lies


Alive in the superunknown
First it steals your mind
And then it steals your soul

---"Superunknown"

And that's all I have to say, because there doesn't seem much that can be said that will make any sense, does there? They are making us put our kids in group homes, because while everyone around me marveled at my parenting skills in the face of special needs, it turns out that I have no parenting skills; apparently I'm pretty bad at it. At least, that's what Children's Services say, and they are always right. Right? (Wink, wink)

So Taneesha, Christina, Holly, Elizabeth, and every other joker in the CPS deck of cards, thank you. Thank you for enlightening me as to my parenting failures. Thank you for making me see the light.

(And my thanks to Soundgarden for providing the soundtrack to my 2016 so far.)

Saturday, December 26, 2015

Routine

subtitled: "Get a Mammogram, Man!"

In the past year I have gotten to know several breast cancer fighters and survivors quite well. I sent Bible verses and jokes to a friend during every chemo appt. she had. When she had radiation treatments, a group of us on Twitter dubbed ourselves the #pocketfulloffriends and sent her encouraging tweets every day of her treatments. Melissa is cancer free now. Thank God, or Shakespeare, or whoever floats your boat. She fought, and she won.

But the experience of knowing breast cancer fighters made me determined to encourage my wife to not postpone her regular mammogram. Hey, I get it. They aren't comfortable and most women do not care for them. My colonoscopy wasn't a piece of cake either, but it's a different experience. In any event, I requested that my wife get one. It's just routine. You go in, get squished, and then get a letter a week later saying "Yippee! All you have in your breast is breast." Nothing to it.

Have you ever been to the breast center, guys? This is a similar experience to taking your wife to the gynecologist. You know why people are there, they know why they are there, and you go out of your way to not look at anyone lest they assume you are thinking about why they are there. And at the breast center the women aren't even looking at each other. It's routine, they tell you. They don't tell you how to respond if the mammogram shows something going rogue. It's routine, they tell you. Nothing to worry about. Unless there really is something to worry about. That's all you can think about.

I took my wife to lunch after her mammogram. She earned it. Now all we had to do was wait for the "all clear", and I could quit thinking about breasts. Except for certain times of the night.

Five days later we got an envelope in the mail from University Hospital Elyria. I ripped it open.

"Your recent mammography examination showed a finding that requires additional imaging studies for a complete evaluation. Most such findings are benign."

Umm... what the hell?

This was supposed to be routine. Get squished, get the "all clear", move on.

Umm... what the hell?

The two friends I told about this told me not to worry. My own wife told me not to worry. They probably just missed something. It could be that the findings were unclear. That ever-present word "routine" made its presence known.

Sorry, but I'm going to be concerned just a little bit. If I wasn't concerned at all then I should just turn my husband card in. The letter said "Most such findings are benign", which means they saw something there. Benign would be great. I had a benign tumor removed earlier this year, and I would love for my wife to join the club.

"Most such findings are benign." Which means that some such findings could change your life.

[MAMMOGRAM DIAGNOSTIC- LEFT] Need cone down film and ultrasound to complete evaluation of left breast

January 7, 2016, 9:30AM.

To be continued....

Saturday, October 03, 2015

The 49 Club

Birth Date: November 19, 1831
Death Date: September 19, 1881, age 49


It was August 7, 1962 when the seminary professor turned 49, He had three children, a son and two daughters; the daughters still lived at home while the son had joined the military the year before. He had a college degree, a master's degree, a doctorate; his students may have addressed him as "Doctor", but his first grandchild, scheduled to arrive in the fall of 1966, would just call him Grandpa. From the days in which I became aware of the world around me, my Grandpa Mac was always loved, but always old. What did I know, I was a kid at the time.

Birth Date: May 19, 1951
Death Date: April 15, 2001, age 49


My mother turned 49 on April 21, 1990. She had four children, two grandchildren; all four of her children were out of high school, and her oldest son was mere months from graduating Bowling Green State University with a (useless) degree in secondary education, ironically named a B.S. If you had asked me at the time, I would have told you my mother was old. I was 23.

Birth Date: September 24, 1948
Death Date: May 28, 1998, age 49

My father turned 49 on February 7, 1992. He had four children, three grandchildren; his oldest son was working at a pizza restaurant, mere months away from losing his job after an argument with his manager. If you had asked me I would have said yeah, my father was old. I was 25.

Birth Date: February 8, 1958
Death Date: June 15, 2007, age 49


The day was April 6, 2001. I remember it only too well. I came home from my job at a local chocolate factory to be the recipient of a call from my mother to the effect that my beloved friend, confidante, and sister to my father, Evelyn, had suffered two heart attacks. Did I get the email? I hung up with her quickly in order to engage the dial-up modem on my computer, only to realize that Evelyn was always the one who sent the emails.

I received another call not long after, again from my mother. Evelyn was being taken off life-support. She was gone.

I sat on the end of my bed and my wife of two years laid her head on my shoulder. My emotions swirled as a funnel cloud swirls and bears down on the flat Kansas farmland. Evelyn was gone. Damn. But she wasn't that old! I was 34. Evelyn was 49.

And now.... I am 49 years old. When I graduated from college 25 years ago, 49 was still old. Now? People my age have children out of college, they have grandchildren, some of those people my age have even died.

I am the father of two teenagers, 15 and 13, although the parenting experience is a little different for me due to my children's autism. I walk slower, my knees usually hurt like hell, two fingers on my right hand don't even bend all the way until I've been awake for a couple of hours. I have a couple of lumps on my body that I'm afraid to get checked out for fear that the doctor could tell me... "the news". I'm not expecting to die any time soon, but it could happen; the idea has suddenly become much more real. It could happen.

Or maybe not.

After all, I'm only 49.

(Italicized birth and death dates are, in order, President James Garfield, musician Joey Ramone, entertainer Phil Hartman, and wrestler Sherri Martel.)

Saturday, August 22, 2015

Anna Renee Duggar and the Freedom of Choice

Pro-Choice, Anti-Choice, freedom of choice… these are the hills that people choose to die on in the culture wars of today. What is being chosen or not chosen usually depends upon the age, gender, beliefs and sexual orientation of the person doing the choosing; and what defines a “good choice” or not depends upon those same characteristics in the people watching the choosing from afar.

Joshua James Duggar sure made some solid choices, didn’t he? He chose to tell people what choices they shouldn’t make, going as far as to pursue the enacting of legislation which would outlaw certain choices. Those who strove to protect the right to make said choices labelled him “anti-choice”, all the while condemning Josh and his wife Anna Renee for the choice they made to have four children. Josh has now exercised his freedom of choice right into the political graveyard, choosing to enjoy the sexual fruits of numerous women not named Anna Renee Duggar, all the while ignoring a beautiful woman choosing to live her life faithful to her marriage vows and raising Mackynzie, Michael, Marcus and Meredith at home.


choice - /CHois/
noun: choice; plural noun: choices
1. an act of selecting or making a decision when faced with two or more possibilities.

@marymichaelm:
Anna Duggar- you need to run like hell sweetie

@msh3ll:
If Anna Duggar ever decided to crowdfund a divorce from Josh Duggar, I would consider donating. Seriously girl, GoFundMe yourself a lawyer!

@acarleymark:
Hey @Anna_Duggar, the Bible says infidelity is grounds for divorce. You have a free ticket to leave Josh even fundies can't deny!

‎@bec04us:
Anyone else think Anna Duggar should flip Josh the bird, throw on some pants & go start her new life already?

@BookishBren:
I feel like we need to rescue Anna Duggar and set her up a NYC apartment with a caring, African-American, gay man.


God bless, Twitter, huh? Social media knows what choices everyone should make.
But what if Anna Renee Duggar should choose to stay with her cheating, lying perv of a husband, and even… (gasp)… forgive him?

Ooh.
Wrong question.

carolinehilding564: (from Instagram) Anna is absolutely pathetic!! Her husband is a cheating adulterous piece of shit! ! And, now Anna is going to accept part of the blame!!! What the Hell is wrong w her!!! So I guess in her head she's partly to blame, why?? Cuz she wasn't "putting out" enough?? And, that's makes it ok for him to screw around. Anna needs to grow some balls pack it up and move on. But we all know she'd never do thst....so she's just goona stick by his lying cheating side....and will ALWAYS wonder if he's still cheating, it will always be right there just in the back of her mind buzzing around like a gnat after rotten fruit.

So what choice should Anna Duggar make?

A) She should leave that lying, cheating SOB. Start your life anew, girl! Go get yours!
B) She should stay faithful to Josh, regardless of how unfaithful he was to her, and express the love Christ has for the lost sheep. After all, Christ did not come to seek the healthy, but the sick; he leaves the 99 sheep to bring the one lost sheep home.

C) She should reflect upon the situation, seek counsel from those she trusts, and when she feels that she has enough information at her disposal, make the choice that feels right for her and leaves her at peace.



If you answered C, you would be correct.

How can I do this? How can I encourage a victim to stay in the situation in which she has suffered? How can I perpetuate the culture that blames women for the failings of their husbands/boyfriends/significant other males in her life?
I’m not doing any such thing, of course. What I am suggesting is that to stay or not to stay is her choice and not anyone else’s. The choice doesn’t belong to Twitter, they can’t even decide what boy band is worthy of our devotion. The choice doesn’t belong to Facebook, they have a hard enough time discerning which memes are true and which are false. The choice doesn’t belong to the Duggar Huggers who hang on every word the family says, trailing them from speaking engagement to speaking engagement as if they were Deadheads, writing fan fiction in which Joseph always marries them, and photoshopping themselves into Duggar family photographs. The choice doesn’t belong to the Duggar haters, who knew from the very beginning that this family was shady as f—k, who KNOW that Josh is still copping a feel when Jana and Jinger are asleep, who KNOW that the family is involved in a cult regardless of whether they can even define the term “cult” or not.

There are certainly choices that are healthier than other choices. If Anna was being physically abused then yeah, the best choice would be to get the hell out. We have no evidence of that; and before you say “Oh, I’ll bet it’s true”, don’t put money down, because I’ll bet you would lose. If I were Anna I would make Josh submit to an HIV test, that would be a wise decision; but the last time I checked, I’m not Anna. My butt is too big.
The choice belongs to Anna. No one is asking you. I wouldn’t stay up by the phone waiting.

Choice. Everyone has it. No one wants the other guy to exercise it without asking them.

Ain’t freedom of choice a marvelous thing?

 

 

 

 

Sunday, March 08, 2015

Dr. Arthur Stanley MacNair, Jr., M.Div., D.D.

March 13th is the first of a triumvirate of sad death anniversaries for me- the 19th anniversary of the passing of my grandfather, known to some as Dr. Arthur Stanley MacNair, MDiv, DD, known to others as Stan, known to me simply as Grandpa Mac. Never Grandpa MacNair, never Grandpa Stan, just Grandpa Mac.

I have stared at this screen for the past ten minutes, a myriad of thoughts filling my head, none of which seem a good starting place for my thoughts. How do you summarize the life of an 82-year-old man who is simply the one person you most respect out of any you have known in your life? Well... you don't. You can't. There aren't enough books in the world to explain the unexplainable.

There is a story about three blind men who come across an elephant in the forest. One of the men feels the tusk and believes he has found a sword; another feels the legs of the elephant and believes he has come across a tree; the third feels the trunk and proclaims he has discovered a sword. The truth is that to attempt to define someone or something as the sole properties of just one of their parts is to do an injustice to that person or that thing. My Aunt Barb would have one view of her father; my friend Barbara would have another view of her pastor, teacher and mentor; as his grandson I only knew him for 30 of his 82 years, but my view of Grandpa Mac would differ entirely. All of these views, of course, would not be the final definition of the man but would be him all the same.

I am confident that friends of mine reading this would have loved the man, as he would have loved them. Lisa, you would have met a man committed to women's rights, equality, inclusiveness, and justice. Kate and Jason, you would have met a man whose answer to the problems of autism wouldn't have been an answer but an embrace and a willingness to be a support for you, as well as a willingness to shake the trees to find others to continue that support. Skip, my grandfather would have looked at your efforts to deal with bullying, smiled, and encouraged you to never give up. Melissa and Bill, my grandfather would have wept with you, laughed with you, and I would bet he even would have been willing to put on that pink wig for a quick picture. He was that kind of man.

In 1993 my father and I took a Greyhound bus out west to visit my grandparents in California. My grandmother, in typical fashion, had the whole week planned out for us- Alcatraz one day, Chinatown another day, and family dinners all around. Chinatown didn't happen because my father was sick, so I went to Berkeley by myself for a day, and my experiences in encountering different types of people blew my mind.

One night, after my father and grandmother retired for the evening, my grandfather sat in his chair and I sat in one opposite him, and we talked, not grandfather to child, but man to man. We discussed the Reformation, we discussed my frustration with the organization called "church", we discussed... well, a lot of everything. And as we got on the bus to return to real life, he put a hand on my shoulder and said "You came a boy, you're returning a man." Meaning, at least to me, that my relationship with my grandfather, and by extension my grandmother and aunts, was no longer higher and lower but eye to eye.

In 1995 my battles with mental health issues got the better of me and I was admitted to the hospital for three days. That year I wasn't real enthused about writing the annual Christmas thank-you notes; beyond "thank you" I never knew what to write to pad out the prose to make an acceptable letter. So I postponed them, and postponed them, and soon it was the end of January and I knew if I didn't get those thank-you notes out right quick then I would find myself shamed in the annual newsletter next year. So I thanked them for gifts whose identities are long since lost to the sands of time, told them that 1995 included a stay in the hospital for my depression, and sent them off.

At the time my grandfather was sick and didn't talk much. But when my grandparents received my letter Grandpa Mac got on the phone to me, and in a halting voice which still carried a certain authority he told me that he loved me.

And that was the last time I talked to him.

One morning he woke up unable to walk, so he was taken to the hospital, and then to the assisted medical wing of the complex my grandparents were living in. Three weeks later he decided that was it, he had lived a full life but it was time to move on. He refused food, and on March 13th he died.

March 13, 1996. April 6, 2001. May 4, 2004. The whole family dynamic changed after those three dates.

And yet, when a grain of wheat falls into the ground and dies, it bears much fruit. Grandpa Mac is gone, yet the ideals he lived for are ideals many still strive for.

Goodbye, Grandpa Mac. I came into this life a boy; hopefully when it is my time I leave a better man.

Thank you.

Monday, January 26, 2015

The Miracle (of Matthew MacNair)

I was chasing down the days of fear
Chasing down a dream before it disappeared
I was aching to be somewhere new
Your voice was all I heard


It was April of 1999 when it started, the call. The call to riches and glory. The call to something greater than myself. The call to be the official father of the new millennium.

I'm a numbers guy, so I did the math. I knew that the first baby born in the year 2000 was going to have publicity (and free stuff) thrust upon them, and by golly I wanted a piece of that action. The end of March-beginning of April 1999 was when things would have to begin. So... my wife went off the pill, and, well, just use your imagination. Or maybe not. It could get ugly.

God saw through my materialistic desires, however, and conception did not take place in March. Or April. Maybe May? Because at the beginning of June, when my wife's body behaved as a broken typewriter would, we went to the drugstore. Not having any experience with such things, my wife asked the female employee who asked us how she could help us which one she would buy. After a short discussion about the merits of various devices designed to be, well, you know... we walked out with two of them, went home, and underwent the process.

Plus sign. Yeah, we were pregnant all right.

I was young, not dumb
Just wishing to be blinded
By you, brand new
And we were pilgrims on our way


Laura is a small woman, but man, was this baby getting big. I thought it would be cool if the baby was 10 pounds when it was born. I mean, bragging rights, man! 10-pound baby! Not many people are awarded this honor! My wife did not see things my way, however, and let me know in no uncertain terms that a 10-pound baby was not passing through, well, "there".

On January 31, 2000, the ob-gyn decided that enough was enough, and that this baby was coming out now. My wife was admitted to the hospital, and the next morning was administered a drug designed to speed up the process.

Speed up the process. Yeah. Famous last words. February 1st came and went... the first day.

(By the way, ladies, I tip my hat to you. This process is not designed to spare any shred of dignity. Get in bed- undressed- wear a robe that was designed for someone three sizes smaller than you- have it all hanging out while total strangers come and go and poke and prod, I mean. Good God, man, if guys had to give birth the human race would be dead. I thought my colonoscopy was bad....)

February 2nd came, and still, 3cm, that's it. Finally the doctor said the words both scary and magic- "C-Section". The baby was coming that afternoon. It's getting real up in this hiz-ouse.

I woke up at the moment when the miracle occurred
Heard a song that made some sense out of the world
Everything I ever lost, now has been returned
In the most beautiful sound I’d ever heard.


I was going to miss having the baby be born the old-fashioned way, but coming through a window instead of the door? Cool, man! They had her spread out in what amounted to a crucifix position, a curtain blocking her view, and her belly cut open all the way across with the flap of skin stretched up. I saw her guts, man! You think you know your spouse, but you don't really know her until you see her guts.

And with a little pulling, a miracle occurred. There was a human being in there, a little purple thing bleating like a sheep. The most beautiful sound I ever heard. Matthew Stanley MacNair, the fourth of five generations of MacNair men to have the name Stanley, named after my great-grandfather, my grandfather, and my dad.

Everything I ever lost, now has been returned
In the most beautiful sound I’d ever heard.

We can hear you
We can hear you
We can hear you


That day seems so far away now, but the anniversary of that day approaches for the 15th time on February 2nd, a Monday this year, so he'll get the big celebration at school. Not that it matters that much. He doesn't understand birthdays, he doesn't understand celebrations such as these. Autism has robbed us of so many things parents get to enjoy.

But fatherhood has given me oh, so much.

He likely doesn't even understand what I mean when I say "I love you, son."

I say it anyway. I love you, son. Happy Birthday. And many, many more.

I woke up at the moment when the miracle occurred
I get so many things I don’t deserve
All the stolen voices will someday be returned
The most beautiful sound I’d ever heard

Your voices will be heard
Your voices will be heard



all song lyrics from The Miracle (of Joey Ramone) by U2









Saturday, January 24, 2015

Guest Blogger: Stanley MacNair

My grandfather was a minister with the American Baptist denomination from 1939 until his death in 1996. One of his practices in his various pastorates was to write a column for the church's bulletin, which he titled "Monday Morning Minister's Musings". After his death my uncle, Mark Leibenow, put together a compilation of the "4 M's", giving one per calendar day, and distributed copies to the family.

Except for a few. This particular one wasn't in the book; Uncle Mark typed it out and gave it to me. It didn't have a title, he just named it "Sean" because, well, it mentioned me. It wasn't about me, it was more about the unity of the family and the unity of God's family, the oneness amidst many unique parts.

And away we go.
_______________________________________
Sean

In the eight generations that Sean's ancestors (that's what he calls us all!) have lived in this country he can lay claim to 256 grand-parents. Blood lines and genes of 250 people are a part of his makeup. His features are half MacNair, half Finch, but along what pathway came each of those attributes? Why is heinterested in spelling and his brother all wrapped up in dinosaurs? Rhinos I could understand, but why the allosaurus? Something of all that mob of progenitors continues in my grandchildren, and I have no way of knowing who contributed what. But I do know my grandson. He is Sean Lawrence and there is not another like him anywhere. He has, as do you and l, a sense of self as utterly differentiated from any other self.

I, the mob, but I the person. I, eating the bread of communion last week in concert with all of you because we are a part of all whom we have met, of all who contributed to our selves. I, taking the cup alone last week because it is in my solitariness that I meet my Maker, who is my Judge and my Lover. To be the one I know myself to be is to exist as an integer, a whole number, a one. Regardless of what lines meet and cross in me from the ancestors, they do cross in me and I stand by myself.

But I can never escape, nor do I want to, the sense of the presence of all the others, and the workings of the processes of living. I am accompanied along my road by those I never knew and those I did. From my mother who is dead, and from my father who still lives, I am never wholly apart. Absent, they are present. And not these alone. Though I walk through the valley of the dark shadow, fear does not conquer me, because Another walks by my side. There is, as the two mountaineers said after a harrowing climb, a third man on the rope.

A. Stanley MacNair
 est. late 1970s 

Sunday, January 04, 2015

Dear Sophie

Dear Sophie;

This is your friend Sean here. Not sure how much you get on the Internet, or if you get on at all; but sometimes you can meet some really nice people on the Internet. I met some really nice people that are good friends, ladies like Kate and Lisa and Skip and your mom.

Even though I've never met you, we have some things in common. You live in Ohio, and I live in Ohio. Sad things make me cry, and sad things make you cry. It's OK to cry, Sophie. Sometimes when I just don't know the words to tell people how I feel inside, I cry. Sometimes when I'm afraid, I cry. When there are a lot of bad things happening at once, and it feels like it is just too much, I cry.

I've had people tell me that boys don't cry, but you know what? I don't believe that. I don't know if your mom and dad talk to you about God, or if you even understand about God, but let me tell you something. I believe God made us to feel things on the inside. Sometimes we feel really happy, and we laugh, or we just jump up and down and smile. Sometimes we get afraid, or we get sad, and we have this feeling inside like we don't want to do anything. And we cry. But it doesn't last; pretty soon I listen to the Beatles or you watch Frozen and we are happy again. God made us this way. We are allowed to feel things inside.

I'm your friend, and I don't want your mom or your dad or you to be sad. But sometimes things happen that make us really sad, or really mad, and we don't know why they happen. They just happen. And it really stinks, Sophie, it really does. But when those times happen, Sophie, here's what you should try to do. Go ahead and cry. But when you're done, go up to your mom and dad and tell them that you love them, and give them hugs, and then give them more hugs. And they will tell you that they love you, and they will give you hugs, and then they'll give you more hugs.

Because let me tell you, Sophie, you might not believe it, but moms and dads get scared too. And moms and dads cry. But there is always something about smiles and hugs from their children that can help them get up and keep on going until the next time.

You can do this, Sophie, I know you can.

I hope someday I can come to where you live and meet you. Save a hug for me and I'll save one for you. Until then, Sophie, remember: you got this.

Peace and love,
your friend,
Sean

Friday, December 26, 2014

Bang your head, mental health will drive you mad

Someone please message me tomorrow to make sure I didn't do something stupid.

Yesterday was Christmas. We were awoken at 7AM to the sound of my daughter crying and my son headbanging in his room. My wife and I put the battleplan into action- I tended to my son, she tended to my daughter. I wiped his butt and changed his diaper. While my daughter was now laughing and kissing my wife, my son kicked me and threw himself down on the floor, screaming and crying.

Someone please message me tomorrow to make sure I didn't do something stupid.

8AM rolls around, and my son has plastered psoriasis cream all over his head. Bath time. I start up the water and tell him to get into the tub. He bangs his head on the wall and kicks me. Then hits me. Then kicks me again. I finally get him into the tub and wash the cream from his hair.

Someone please message me tomorrow to make sure I didn't do something stupid.

While parents were watching their kids laugh with glee at the arrival of the Lego set they desperately pleaded with Paul Blart, Mall Santa for, I watched my son start to move towards his bedroom, stop abruptly, and then move just as quickly towards my wife in order to rain blows upon her head. I was reclining in the easy chair at the time, so in the time it took me to get my fat ass out of that chair my wife took ten shots to the head. He was sent to his room. 9:30AM.

Someone please message me tomorrow to make sure I didn't do something stupid.

After my son administered my fourth beating of the day, I crashed into the recliner and wept hard. Is this life? Is this all that I have to look forward to? When will it be our turn to see our children enjoy Christmas morning, with the smiles and hugs that accompany such an event for families all over the country? Will it ever be our turn? Will this ever end? Or will the end only come when my son is sent to a group home, or I just die?

11AM.

Someone please message me tomorrow to make sure I didn't do something stupid.

"You need to get some help. You can't go on like this."

Well no shit, Sherlock. I'm not at the end of my rope, I'm hanging from a frayed loose end that is hanging from the end of the rope. I sat in my chair, and wept hard. What can I do? I can't go on like this... but I have to keep going on. I have no choice. There are waiting lists for group homes, and they barely move. To get an emergency exemption isn't as easy as saying "here, look at my bruises". There are forms, and committees, and assessments, and excuses. A group home isn't happening any time soon.

How about therapy? I am ahead of you on that one. I have been seeing a therapist for 9 years. She recently moved on, so I have been assigned to another therapist in the same organization. He already cancelled and rescheduled on me once. Not real excited about switching. Really not excited about seeing a guy.

"Sexist much?" Yeah, it sure looks that way. I will confess to you one thing that will either make me look sexist, or sensitive, or just a guy on the make. As a rule I prefer the company of women to men. I don't like talking to guys. Women tend to have more conversations of substance than men. The majority of my Twitter friends are women, women whom I refer to as my "Twitter sisters" because I feel that strongly about the relationships we have established. Canadian Mom, Tel Aviv Mom, Boston Mom, Washington Mom, Ciarra the UK Gamer, LL Cool Reverend whose state I can never remember, and others whose names I won't give but whose presence is just as strong. You read my last blog entry, did you not? (If you didn't, go do so.) When Eminem told me she had breast cancer it crushed me harder than it probably should have. But what can I say? These people mean a lot to me.

They probably mean more to me than they should, I realize that. They all have lives that include husbands and children with various special needs. (Except for one, who is autistic herself). When I have a crisis I can't expect anyone to drop whatever she or he is doing and dig me out of my latest hole. I need to take my medicine, and keep my psychiatrist appointments, and talk to my wife, and pray, and listen to AC/DC loudly.... And being a man, I usually can expect to hear "buck up and be a man!" from someone.

And all of these things I do. I pray... although usually much more for others than myself. I take my medicine, even when it seems to be doing no damn good. I even take extra when I think I should. Yeah, not cool. I keep the psychiatry appointments... which can only take place once a month, otherwise insurance won't cover them. I listen to AC/DC... oh hell yeah I listen to AC/DC, Back In Black is a rock classic. I talk to my wife...

Let's unpack that last one a little, shall we? I will try not to be crass, I will respect the privacy of our relationship, but I will be honest. You go into marriage with certain expectations and dare I say fantasies, and often those expectations are derailed. By the third year and/or the first kid there are no more long conversations about the meaning of love and life over wine and a nighttime fire; there is no hot romance three times a week, or once a week, or even once a month for that matter; special needs children relegate the weekly date night to the "Gee, remember when...?" file of our brains. I love my wife and I am devoted to her. We've been married for 16 years. But let's be honest, our relationship often takes the form of two people who can barely keep their heads above the water. Who can make time for... well, you know,.. when fighting for survival takes all the time and energy you have?

Someone please message me tomorrow to make sure I didn't do something stupid.

And so, Twitter sisters (who will likely be the only ones who read this), this is where my life is now. In order to survive somehow I have to admit honestly that I am no fatherhood superhero, I am often not a "great guy", I am not a traditional strong male, I hate that shit. I am a mess who is currently fighting for survival. This is where the life of an autism father has left me- proud of my children, fiercely protective of my children, loving my children with an incredible love that I never thought I was capable of... but dying on the vine at the same time.

So every once in awhile, could someone just message me to make sure I'm not doing something stupid? I promise, I won't become a life-draining leech. I also promise that when the tough time comes I will have your back.

OK?

Thursday, December 18, 2014

The Luxury of Death

What the fuck am I gonna do? We can't die. We don't have that option.

Twitter is a funny beast, isn't it? On one hand you can communicate with celebrities, get as it happens news and connect with others who have similar interests and life situations. On the other hand you can get obsessed with the details of the lives of celebrities, get invented news stories that serve to muck up a landscape already crowded with people who have "the truth" and "a balanced perspective", and become so close to those who have similar interests and life situations that when something serious happens in one of their lives, even though you have never met that person, you feel broken and sad, and weep.

Special needs parents, although being part of a world which has many inhabitants, often feel like an astronaut without a tether, endlessly floating in space, alone. I don't get out unless it involves a necessary grocery trip or a medical appointment for one of my children. I don't get to celebrate holidays, I don't get to have a drink with "the guys"... I missed out on a chance to meet KISS, for crying out loud! A lot of sacrifices made in the name of love, the love of a father for his son and daughter, a love that willingly makes sacrifice after sacrifice but feels the loss of them all the same.

In cases such as this social media becomes that tether, connected to the lives of those who can honestly say "I know how you feel", a tether that often provides the life you need to get up in the morning one more day, clean poop off of the walls and get kicked in the kneecap as you navigate the process of school preparation. I wake up, I turn on the computer, and I check my Twitter feed to see who actually got to go out on a date with their spouse the night before, whose child had a meltdown-free day and whose child had to be medicated that night because they just wouldn't calm down.

We can't die. We don't have that option.

Who is going to take care of our children when we pass from the scene? Sure, some of those children will grow to be adults who can maneuver the daily routines of life, with assistance, perhaps, but maneuver they do. Others require a level of care that leaves their parents exhausted, with no one they know who they could trust with the care of their children, or even someone who would be willing to take on such a burden. Those parents do not have the luxury of dying. The irony is, the stress of their situation may bring on such an end before they normally would reach it. Kind of hurts to get kicked in the kneecap over and over again, you know.

I have breast cancer.

And those words acted as a metaphorical kick to the balls, rendering me unable to give a shit about The Interview or Rajan Rondo or whoever hates the Duggars that day. What the hell, Lord? Do I have that many friends that you think you could hit one of them with a hell of a disease and think I wouldn't notice?

Good God, that sounds selfish, doesn't it? A close friend gets a diagnosis that overturns her world and I'm concerned about how it affects my life? Who the hell am I? It isn't my story! I should be concerned about her husband, her daughter, her future, and yet I am weeping because my close friend's illness is going to overturn the applecart of my life? I mean, WTF?

But you know, I've always been one who looks the issues of life in the face and say "Let's cut the crap". I cannot pretend that the illness of a close friend whom I have never met, and whom I may never get to meet, has not hit me hard. Harder than it should? Well, I'm not taking on that cause today. Tomorrow isn't looking good either.

Find Christ again. I need you to.

Well that leaves me in a bit of a quandary. My friend needs as many sources of strength as she can muster, for her and her family. Yet I want to tell Jesus Christ to fuck off. What to do? Do I stand my philosophical ground and not give Jesus Christ the time of day? Or do I stand with my friend who needs all the friends she can get to stand with her and for her, put away my lingering doubts about the presence of God in our lives, and beseech God to spare her the pain and heartache that cancer usually brings?

Find Christ again. I need you to.

I am not strong. Let's say that again. I am not strong. I am tired. I can't listen to my son hurt himself day after day after day with the doctors that could help him scheduling us for a month off. I can't bear to hear my daughter cry when my son screams, which causes my daughter to cry even harder. I can only get 4 hours of sleep so many days in a row before I emotionally collapse. This life is not easy and I am not Superman.

Find Christ again. I need you to.

Hey, Jesus? It's me. We need to talk....




Friday, October 17, 2014

3,833

This weekend is a three-day weekend for our kids. "Teacher Inservice Day." If I hadn't taught Excel to some administrative assistants on an inservice day seven years ago, I would suggest that maybe the teachers were playing poker and smoking stogies, or something more potent. Alas, I know better, and knowing is half the battle.

My 14-year-old son Matthew came home from school yesterday, and after pacing the hallway for 20 minutes, headbutt me in the chest. Then kicked me. And kicked me again. And again. I am accustomed to getting assaulted on a daily basis, and "assaulted" really isn't too strong of a word; yesterday in particular I took fists to the head, headbutts to the back of the head, and kicks all around. One kick to the kneecap and another to the village preacher were particularly painful.

If a 14-year-old from the block were to kick me in the weathermen and beat me in the head I would take the opportunity to defend myself. But in this case I have to take it. I have to just let him do it, and I can't hit him back. I cannot hit him back and I have not. I will not. He is my son. Mind you, I don't stand there forever, I do retreat, I do keep him at arm's length when I can. But my perpetually bruised legs and arms testify to the fact that when I have to change his diaper, I get beaten; when I get his dinner, I get beaten; when I have to give him his meds, the meds get thrown across the room and I get beaten.

We have been to the ER again and again. And again. And again. I won't be going back there barring some serious emergency that they won't be able to blame on his autism. 9 hours... 10 hours... 17 hours.... Some of the nurses know us by name now. But every time it has been a useless endeavor. They give him a shot, they keep us there, they send a representative from the Nord Center to give him a pointless psych evaluation with questions that do not apply, they call around to see if anyone would be willing to admit him this time, and then... "Sorry, but we are just going to have to send you home." On the way home I usually get belted in the back of the head repeatedly. Five-minute drive, not so bad. Driving from Cleveland back home- yeah, bad.

My son is in pain. Let me repeat that. MY SON IS IN PAIN. I have been around him long enough to know. But no one is willing to do any more than the bare minimum to find out why. I am currently listening to my son beating his head against the wall and wailing. That hurts me more than any beating I could possibly take.

I speak of my son so much that I often fail to mention that I have a beautiful daughter named Rebecca. I don't get to spend as much time as I would like with her, to my detriment. She is funny. When she smiles she drives away the clouds if only for a moment. But she is afraid of Matthew, for good reason. Matthew hits her. When Matthew is headbutting and wailing Rebecca is afraid, and she cries. Which causes Matthew to headbang more. Which causes Rebecca to cry louder. And on and on and on.

Oh Rebecca, you are such a beautiful girl, so funny, so spirited, and I love you so much. My heart hurts that I can't spend the time with you that I ought. One day I hope you will understand. Maybe. Odds are that you won't. Just don't hate me. Please. I already have one child who would rather hit me than hug me, I don't need another.

I have to go now. I have to prepare myself for my next beating.

Day number 3,833 of our life with autism has just begun.

Monday, September 29, 2014

Down

Manic Depression's touching my soul,
I know what I want,
but I just don't know how to go about getting it.

Feeling, sweet feeling
drops from my finger, fingers
Manic Depression's captured my soul.
---Jimi Hendrix, "Manic Depression"


Swept chunks of wall from my son's bedroom floor this afternoon. Last night was another rough night in a string of many rough nights, more than I care to count, more than I want to remember. Last night he kicked the wall, and headbutt the wall, and made a hole in the wall. When I went to check on him he kicked me, and headbutt me, and may have made a hole in me if I had let him. He widened the hole in my heart, in any event.

No sooner do I fall asleep again than I am awakened by the pleas of my wife. "Sean... Sean... wake up! Matthew's beating me up!" I clear the fog, open my eyes, and see the shadowy figure of my son standing over my wife. But this doesn't make any sense. I have his room secured, by necessity. To let him wander overnight would be an invitation for all of us to receive assaults. I guided him back to his room where I was able to put two and two together. The hole he made led to a closet in my daughter's room. He widened it, he crawled through, he escaped.

Oh Lord, how long?

I'm losing ground
you know how this world can beat you down
I'm made of clay
I fear I'm the only one who thinks this way

---Nine Inch Nails, "I Do Not Want This"

People began to disappear, as if in a horror movie. Slowly, one by one. You returned from your break and their station would be empty. The rumors began to fly. They're letting people go.

And then they call for you.

Michelle Markel and Bob Gray sit in the HR office, Bob never saying a word. We're restructuring, Michelle says. It is now time to yank the rug out from under everything you hold dear. Get the hell out. Do not talk to anyone. Just go.

Yeah, like I'm going to let you touch any of my stuff, Michelle. I'm getting it, I'm saying goodbye to a few people, and then I'm gone.

Maybe you didn't hear me, numbnuts? Go. We have people you won't get past.

Oh, what the hell are you going to do, send Bob Gray after me? Running three miles an hour in his motorized scooter? Yeah, let him try.

I get up to go. They get up to make me stay. We face off. Oh, did I forget to tell you, Michelle? You don't get to win.

I got my stuff, I said goodbye, and on my way out I slammed the door. Surely that made me feel better.

Well, not really.

Two months after my beloved son was born, my tenure at NACSCORP came to an end, and with it my tiny social circle. And any kind of financial security I thought I ever had.

Jesus, Jesus help me
I'm alone in this world
And a fucked up world it is too
Tell me, tell me the story
The one about eternity
And the way it's all gonna be

Wake up, wake up dead man

---U2, "Wake Up Dead Man"

It's a girl! And what a girl she was. Nine pounds, 5 ounces. One more week and we would have hit ten pounds, I know it. Evelyn would be proud to have my daughter bear her name.

Rebecca Evelyn MacNair was born on September 25, 2002.

Evelyn Jean MacNair died on April 6, 2001.

Evelyn was a special education teacher.

When her namesake was diagnosed with autism, I shook my fist at God. And cried.

Sure could have used my friend Evelyn about now.

Just when everyday
Seemed to greet
Me with a smile
Sunspots have faded
And now I'm doing time
Cause I fell on
Black days
---Soundgarden, "Fell On Black Days"


Men deal with it too.

And that's all I got to say about that.

Saturday, September 27, 2014

Why ask why?

Why?
---every little kid in the world

Because I said so, that's why!
---every parent in response


I started this blog in 2005 mainly to write about issues of faith and my response to them. I took the title "The Pardoner's Tale" as a reference to the Pardoner in Chaucer's Canterbury Tales: a man who gives the appearance of a righteous preacher, but behind the scenes cares nothing for the people, he just wants their money. The insinuation being that although I like to call myself a man of faith who has been down many roads along the search for truth, there is always something (or someone) hiding behind the mask that makes it clear- the things we believe aren't always as solid as they appear.

In the course of writing this blog I've had many responses. The one I've received more than others, at least from religious people, is "when are you going to settle on one thing?" The second response is like it: "You know, there are no perfect churches." You can substitute any type of organization, political party, or person for the word "churches", but the gist is the same- you are expecting perfection, Sean, where perfection doesn't exist. Don't ask why. Don't expect change. In the popular parlance, "it is what it is."

But the question "Why?", and the related question "Why not?", are ultimately at the root of everything- all art, all literature, all scientific discovery, and yes, all theological and philosophical reflection as well. Why keep trying to invent a light bulb, or an airplane, or a radio, when previous experiments have ended in failure? Why not? Should we investigate why some children are born disabled? Why not?

Someone asked themselves why women should get to vote; someone else asked, "Why not?" Someone thought to themselves, hey, why not kidnap Africans and make them work the fields? The refusal of generations to ask "Why?" led to one of the greatest tragedies in American history. Why do I go to Rainbow Babies and Children's Hospital and see young children in wheelchairs? Why will one young man have the same frozen expression on his face every day of his life? Why are there children bald from chemotherapy instead of out playing soccer? Why did Avonte Oquendo die?

Damn it, isn't anyone going to ask why?

Why do the babies starve
When there's enough food to feed the world
Why when there're so many of us
Are there people still alone

Why are the missiles called peace keepers
When they're aimed to kill
Why is a woman still not safe
When she's in her home

---Tracy Chapman, "Why"

I don't expect perfection. I'm not that naïve. But I do believe that the failure to ask ourselves "Why?" can lead to imperfections that could be avoided. "Because we've always done it this way" is not an answer! If there is a reason you've always done something a certain way, then it shouldn't be that hard to give it. If there isn't a reason, hey, that's great, do it however you want. Just don't insist that it's the only way to do it... yeah, you would be wrong on that one.

And the answer to "Why?" isn't always cut-and-dried. "Why does that magazine cost $11.99?" is simple enough- paper costs X dollars, ink costs Y, labor costs Z, the profit margin has to be such-and-so to maintain the ability to continue to produce the magazine... all that is simple. "Why do people criticize what they can't understand?"- a little more ethereal, a little more complex. "Why can tolerant people often be the most intolerant of them all?"- yeah, y'all need to get back to me with an answer on that one, 'cause I'd like to know.

There's a time when the operation of the machine becomes so odious—makes you so sick at heart—that you can't take part. You can't even passively take part. And you've got to put your bodies upon the gears and upon the wheels, upon the levers, upon all the apparatus, and you've got to make it stop. And you've got to indicate to the people who run it, to the people who own it that unless you're free, the machine will be prevented from working at all.
-Mario Savio

The answer to the question "Why?" will often demand a response on our part. "Why can't women vote?" "Well, because the powers-that-be have decided that they should continue to fulfill antiquated roles in the life of the family and the nation, and let the big boys play." Should the suffrage movement at that point have said "Oh, well, OK, I like being pregnant all the time, having inadequate medical care and dying when I'm 35 while in the throes of childbirth, so you take care of the important stuff so I don't have to think"? No! Oh hell no! The question was asked, the response was given, and the resulting actions based on that response have led to greater freedoms for more than half of the population.

You aren't always going to get a good response to the question "Why?" At that point you need to make a decision- is this issue not worth the effort to effect change, or is the action of the machine so odious that you have to make it stop whatever the cost? "Why do Democrats and Republicans often act like (orifices)?" There may be an answer to that question, but I'm not so naïve that I believe I can change it- indeed, that it will ever be changed. It isn't worth the time and energy to me to try to effect change. "Why does my son injure himself and try to hurt me?" That's a question that I ask myself; I know there is an answer, I haven't found it yet, but the answer to that question is of such value to me that I am willing to sell all I have to buy the field in which that answer lies.

The answers to everyday life lie somewhere in between.

Choose your battles. Let things go when you can. But do not stop asking "Why?"

"What's the frequency, Kenneth?" is your Benzedrine, uh-huh
---REM, "What's The Frequency, Kenneth?"


Darlin' you got to let me know
Should I stay or should I go?

---The Clash, "Should I Stay or Should I Go?"

Why don't we do it in the road? No one will be watching us...
---The Beatles, "Why Don't We Do It In The Road?"

Who are you? Who-who, who-who
---The Who, "Who Are You?"