1.) Love yourself. You can’t pour from an empty glass, and the world needs what you’ve got.
2.) Make an older friend in a similar situation. Hangout with people who get you because they’ve walked this walk before you.
3.) Stop blaming yourself. It’s not your fault. Take all of that blame and guilt and ball it up in your imaginary hand. Now, throw it away. You’re done with it. Do that everyday until it’s gone.
4.) Take time for you. You didn’t stop being you just because you have a special needs kiddo. Read a book. Have coffee with a friend. Do what makes you you.
5.) Get rid of the shame. I know it feels like people are looking at you every time you leave the house. Guess what? They are. That’s nothing to be ashamed of. Their staring eyes do nothing to diminish the awesomeness of you or your child.
6.) Date your spouse. Even if it’s just a cup of coffee on the patio after the kids go to bed. Make this a priority.
7.) Learn to trust yourself. You know your kid better than anyone. Your gut can tell you so much if you just listen.
8.) Let yesterday flush itself. Yesterday was a bad day? Doesn’t matter. It’s over. Everyday is a new battle. Get some sleep. Gird your loins. The victory may come easier than you think. But you’re ready when it doesn’t.
9.) Cultivate a hobby. I write. Some people paint. Some work a flower garden. All that matters is that you find an outlet that has nothing to do with special needs and go for it.
10.) I can’t stress this one enough. Let someone love you. It’s ok to cry. It’s ok to fail. Storms come and troubled winds blow away. The love of a faithful friend endures………
Hello, everyone. I’m humbled and grateful that you’ve found your way to my new blog The Uncommon Fraternity. The title is lifted from a chapter in my book, Sick of the Palsy, which details my family’s adventures and daily life with our handicapped daughter. It’s a blog dedicated to laughter, love, and sharing stories, not all of which will deal with special needs parenting. It’s every writer’s hope that his or her words touch a life in some indelible way, and there will be much here that I hope you find affirming, whether you walk the special needs journey or not. It will contain all original material, some fiction, and daily posts about life as a special needs parent, literature, art, history, and whatever else brings me and others joy. Mostly, though, the content will be dedicated to those of us, these few, who make up special needs parents—a group I’ve come to call my friends, brothers and sisters, the Uncommon Fraternity.
So we’ve recently ordered a new wheelchair for Erin. We had to. She’s outgrown her old one by a good bit since her MAGEC rods were installed in her back. She grows mechanically, incrementally, every four months or so, without fail. Her legs are almost as long as her mother’s now. It makes for some unwieldy handling when I have to carry her somewhere. I can tell you that.
When I look back on some of her more well worn and well loved strollers and chairs, I realize they all tell a story. I’ll never forget the time at the big flea market in Canton, MS, when we veered off the sidewalk and turned the whole rig over, and Erin fell out. We thought for a minute she’d broken her arm. But her radial head is subluxed anyway from spasticity, and it’s tough to tell. Besides, she didn’t cry, so we let it be.
Man, we’ve taken those strollers everywhere, across open fields in Jasper County and down Bourbon Street in NOLA. We’ve rounded innumerable hospital and clinic corridors with them and used the attached baskets under the seat like the bed in a pickup truck almost with all the things we’ve hauled in it. Our Doberman rode down there until she got too big.
Really, though, those chairs are monuments to adaptation. We’ve found ways to redneck engineer switches for adaptive toys onto arm rests that definitely weren’t designed for them. We’ve replaced cracked and peeling seat covers and cushions with electrical tape and ersatz, styrofoam padding we’ve scraped up at various craft stores.
It’s a useful thing, this adapting. It’s what life is all about, really, and that includes a life of special needs caregiving especially.
Sure, it may start out shiny and wonderful like those chairs when they roll off the factory floor. But, somewhere along the line, the luster wears off. Things get scuffed, and shaken loose. That’s the wear and tear of the day-to-day. We all experience it.
The truth is, we’re all in a constant cycle of being broken and repaired. I can only speak for special needs parents when I say that, after happy mornings of bright hope and afternoons of anxious fret, we get nights of joyful steps forward and sad contemplations on setbacks. We’ve lost some sheen. But, really, ain’t none of us shiny as we once was, huh?
Yet, there we are—still usable, dinged up, but available.
See, it isn’t being broken. Hemingway reminded us in “A Farewell to Arms” that the “world breaks everybody. And those it can’t break, it kills.” He later added the caveat that we can be strong in the broken places. That’s how the light gets in.
So, no, it isn’t how many times or how badly you’ve been broken that counts. Staying one repair job ahead of the brokenness is where you bring home the gold.
That’s how most of us are, I think. We’re a little rattly, but ready to roll into the next adventure.
I encountered Kubler-Ross’s theories on grief and death as a freshman at Meridian Community College. It was Psych 101, literally as remedial as it gets. Everyone had to take it. I didn’t care about psychology, though I’ve since become more interested in it, back then. I wanted to memorize her five stages just long enough to pass a test, so I could get my grade and move on.
But isn’t it funny the things we retain? My wife and I were recently cleaning out our storage shed when I stumbled upon my dog-eared psyche text book. It was going on the trash. I’d no use for it. I hadn’t opened it since the Fall of 2006.
Ross’s five stages came roaring back to me.
It occurred to me that every single one of those things could be applied to special needs parenting.
You’re sitting there thinking: “Wait. Your child is alive.” Yes, thank God, she is. It isn’t that kind of grief I’m talking about.
No, I’m talking about lament for the “idealized” version of our children we had before they were born. That child, that make-believe kiddo, is dead.
Every expectant parent conjures images of their future children in their heads. In their mind, they envision afternoons at the park, play dates, sleepovers, good grades, heart aches, graduations and grandchildren.
Not one of those daydreams focuses on a child born disabled. No parent fantasizes, or even considers, that their child may be marred in some way, may never walk. Never talk. They may never even be able to feed themselves.
No one prepares for autism, dyslexia, or down syndrome. Yet, they’re always real, always possible.
And, when they happen, that perfect reality you’ve dreamed of for 9 months, longer than that, really, is gone. It’s dead. That perfect child will never be. It’s loss, is what it is.
Doesn’t that loss and it’s concomitant feelings of despair fit the bill of grief?
I can assure you that I experienced all five of those stages.
I denied. There was no way, even as hard as she was born, that Erin could possibly be what she is, I told myself.
I was angry. I was angry at the hospital staff, at God, at Jessica, at everyone. Someone had screwed up, and they should suffer for it. Didn’t my kid suffer? Black rage fluttered in my brain like malignant bats ready to devour something.
I bargained. Surely, if I prayed hard enough, God would cripple me and save Erin, right? That’s how it worked. An eye for an eye, a non-functioning brain hemisphere for a counterpart?
I grew depressed. I didn’t want to leave the house. I couldn’t stand knowing people watched her drool on herself and noticed the odd shape of her head. I couldn’t stand to hear one more time how God only gave special babies to special people and how brave and great a father I was.
What a lie, I thought. I’m a piece of trash and you just don’t know it. Sorry for the language, but let’s be honest. Think it’s hard to read? Try typing it. God knows the truth.
So, I bullied myself internally. I’d taunt my psyche with the knowledge that families like ours were supposed to be sad. I’d failed as father. I couldn’t save Erin. I couldn’t save Evan later. Really, you should probably just die, I told myself. Bye bye, birdie. Save them all the malignancy of your brooding malice.
I shuttered my soul. I made it difficult for God to do anything in my life. Then, it got better. Grace reached in and kicked open the door of my despair. It saved me inspite of me.
I told the internal Goliath I’d set up that I didn’t need to die. He did. People loved me. Christ died for people just like me. No one loved or needed him. I wasn’t the useless one. He was. The bully shrank as light grew inside of me.
“You’ll never be anything. You can’t build a shelf or fix a car or do anything right. You’re just a failed artist and writer. You’re no good. Your kids a cripple,” he shrieked on the retreat. I laughed. “Maybe so. But I’m not the one vanishing, am I?”
The despot was crushed beneath the heel of the divine. It was like I’d emerged on the other side of a fiery trial. I didn’t look back at the waste behind me. What good lay there? Gardens of joy bearing fruits of peace arched ahead of me promising harvests of love.
I was accepted because I’d finally accepted myself. I’d passed through all five stages.
I don’t know if you needed to hear this. I haven’t the slightest idea who may encounter it. But I hope it helps. I hope it reinforces good within you.
I hope it reminds you that even giants in the earth can tremble.
Sometimes, being a special needs parent is like that TV show “,Good Bones,” where the two hostesses find old homes that were once grand, but have fallen on hard times since.
The porches sag. A shutter hangs askew. Here and there, plaster flakes from the walls, and the bricks are cracked. Those are distractions, fixable and—in most cases—minor. But the story’s in the core of the house. It’s the structural integrity of the innermost recesses of the place that dictate how long it stands.
We all know these houses. If you look back hard enough, you can find those childhood memories of old places you avoided because they made you indomitable. There’s another analogy. There’s one in every neighborhood across America, sometimes four or five. Here in the South, they stand in overgrown fields, reminders of bygone “Gone With The Wind” times, a society muted and changed by war, its own sins, and stagnation.
Weathered is the best way I can describe them. They’ve seen seasonal changes for centuries, yet they sort of just………abide.
They continue to stand, beaten, neglected, unbowed. That’s because the bones are strong. The foundation is steady. It’s built in rock, not sand.
That’s an apt analogy for special needs parents. We go through life so many times bloodied, but unbroken. We absorb blow after blow, winter heat, summer snow, spring rain, and mournful winter, yet, here we are.
We’re just like those old houses, really, sagging, tried, broken down in places and whole in others.
We were beautiful once, just like you. We still are, albeit in a transmuted, somber sort of way. Truthfully, the rundown quirks of our nature have made us who we are. Scars tell stories. They lend personality.
Mostly, weather-worn exteriors tell of the great abiding.
I had a date tonight with another girl. It was weird at first. I didn’t really know what to say. It’s been two decades, almost, since I’ve done this. My wife was fifteen feet away. She was putting our 11-week-old down for the night. Erin was in her chair parked in front of football. She loves football.
So, there I was, sitting at my desk, blanket for a tablecloth and an apple pie-scented candle flickering between us. The lights were off. She’d set it up beautifully.
“Do you like your “chili?” She asked. Chili here is water in a clear serving bowl we had left out on the drying rack from a baby shower we’d hosted yesterday.
“Delicious. Did you make it?” I play along. She nodded. There’s a handwritten note on the table for me that tells me she loves me, and I’m a great dad. If only that were so.
This is my middle child, Erika, our seven-year-old. She’s bright, witty, and a phenomenal friend. Her eyes are a luminous brown like her mother’s, and they have a sort of clear shine that lends a lustrous warmth and depth to them that my own steel-gray eyes can’t match.
I love her, and I’m nervous because, in these moments, I realize how little I know about her. Sure, I teach her everyday. I listen when she talks. I know her little preferences.
But she isn’t like Erin. Erin is dependent on me. Erin will never not need me in ways that Erika doesn’t and will never need me. Elyse is a baby. But, Erika, Erika is difficult in ways so opposite of her sister’s disability.
For one thing, she looks like her mother, and she acts like me. She bucks authority. She flys in the face of things she considers unjust. She asks questions I can’t answer—like why did her little brother die, why can’t I see God, and why is Erin the way she is? I don’t know, baby, keeps daddy awake at night, too. There’s so much that she sort of just gets lost in.
Amidst doctor’s appointments, therapy sessions, daily care, you-name-it, she gets a fraction of the attention her sisters require. And she’s ok with it. I’m not. But she is. Isn’t being a parent a tight rope walk? There are a billion little ways we can imprint negativity and hurt into our children’s lives. We always have to be careful. There is no net.
It’s amazing how many siblings of children with special needs are so well-adjusted. They’re tough. They’re resourceful. She begs me to let her feed Erin with her G-Tube. She gets her sister blankets and pillows and Matilda Jane (a stuffed rabbit we got from a pumpkin patch) when Erin is ready for bed. When we take long car trips, she sits in the back between her sisters and holds forth to entertain them.
When she was a tiny baby, I whispered in her ear: “Just because your sister needs me more, that doesn’t mean I love you less.”
It’s a massive struggle to keep our “typical” kids from disappearing amidst the boiling stew of everyday reality. Buts it’s a fight we have to win.
Sometimes, I think of all the ways I’ve let Erika down. And I’m sorry. I wish life had dealt us happier hands, little warrior. I really do.
But, with every failure, I know she’ll rise. She’s an uncommon sibling.
Standard deviation is a mathematical term. Put simply, it’s a measure of the average, broken up into units, of how far you are away from….well…..the average, the mean.
Special needs parents are several standard deviations from the mean. That means we’re a looooong way in either direction from the center of the bell. It would be fruitless to represent us as a scatter-point graph, too. We’d be everywhere.
That’s because not all special needs are the same. Autism and CP are as far apart as Bangkok and Berlin. Dyslexia and Krabbe are as opposite as Hong Kong and Burbank.
We’re all set at variance, not only with one another, but with parents as a whole.
Oh, we can commiserate amongst ourselves. We can lament the scarcity of adult changing tables in public restrooms. We can go on for hours about our lack of adult friendships, the quest to fit in, the pittance of time to ourselves or with our spouses, but—other than that—we’re as different as most folks, maybe even more so.
You know what else we can go on and on about? How we don’t have the luxury of dying and knowing everything will be ok. There’s always the fret about what happens to our babies after our own death, when we pray that we raised their siblings well enough to care for them with the same dogged faith that we did. That’s another kettle of fish, and I’m too happy to talk about it right now.
Back to deviation. We don’t fit on the curve. We know we don’t. Some of us have accepted it and worked around it. Some of us have embraced it. There are a few who’ve fallen away. And there are many in denial.
Brothers and sisters, that is bondage, faithless and fruitless. We’ve been told we don’t belong. Worse yet, we’ve told OURSELVES that we don’t belong.
I’ve battled self-loathing my entire life. Whether it’s my weight, my lack of height, my middle-class finances, or even my doubts about my writing and artistic ability, I can find almost any reason to hate me. Today, my wife pointed out that Satan uses my self-hating nature to tear down, not only me, but everyone around me, too. That hit me.
We can be set at variance with the world, with our peer group, with everyone. We CANNOT be set at variance with ourselves, and that’s the one confrontation it’s hardest to avoid. Inner conflict just makes us miserable. No one deserves that, not you, not the spouse, not the children.
So what if we don’t fit in their little bell curves and models. We’ll make our own way.
Our speech pathologist, who makes home visits once a week, points to the word banana on her whiteboard and asks Erin if it says orange.
There’s a moment of hesitation. That’s how it works. Erin has to fight her spasticity and physical limitations to lift her hand and hit a switch that says one of the two things: “more” or “stop.” If the answer is correct, she “says” stop. If not, she says “more.”
So she inches her hand over, that marvelous hand with those elegant, aristocratic fingers of hers, and hits “more.”
“Good,” the pathologist says. Then she points to the word “banana” and asks if it actually says banana. No tricks this time.
Beats of hesitation. Seconds tick past as she works and fights. “Stop,” she says. That’s reading. That’s distinguishing. More than either, it’s speaking.
Greater still, it’s a miracle, a bonafide-New Testament-miracle. There’s no difference save scale between the Red Sea opening, a floating axe head, a lame man leaping, or Erin speaking.
We’d once been told she was blind, you’ll recall.
Exultation, raw, untrammeled, poured through us all. This is Helen Keller’s “wa wa” moment under the spigot. A decade of my daughter being unable to communicate with the world, being part of everything, yet walled away by her own inability to speak, are coming to an end. She is voiceless no longer.
Better yet, the device that’ll help her hone her skills arrived in the mail today.
All those long days I spent staring into her eyes and wondering what she was thinking are about to be over. Now, I’ll know. It’s a prayer answered, a dream come true. Now, here’s the part you won’t believe.
I never taught her to read, not a word, not a syllable. We were told there was no point when she was just a baby. She’s likely never use it, they said. That’s all divine.
You may not believe it. God knows, I wouldn’t blame you one bit. I didn’t for the longest.
But I don’t have a choice now. It’s miracle season in Jesus’ name here.
And if I ever forget, Erin will speak up and remind me.
I sometimes encounter writers who have these amazing stories locked up inside of them and seemingly no way of busting them lose. That’s incredibly sad. Really, everyone has a story to tell, some happier than others—others weightier than some.
I’ve had writer’s block dozens of times. I’ve got it now.
But I don’t think I’ve ever been afraid to write. Oh sure, every would-be novelist faces the intimidating blankness of the word processor and the blinking impatience of the cursor at some point. Some of use are up against deadlines, publishing demands, rewrites, you name it. Others just have something to say that they can’t seem to get out, or get it out like they aim to, at any rate.
Sometimes, writing is like being an ox pulling a plow through deep mud. Other times, it’s like a train with a full head of steam riding a greased rail an hour late for the depot. It’s just coming, and it’s great.
Sometimes, it’s a witty sophisticate ashamed of his Mississippi twang. Other times, it’s a rustic philosopher hashing out the world’s problems through bucolic yarns chocked to the gills with metaphor. It’s even both at the same time.
But what writing isn’t is an invitation to empty work. It’s not a clarion call to misery.
All writing has recompense, financial or otherwise. For me, it’s an outlet. For a lucky few it’s a living.
I started writing seriously not long after Erin was born, and I started enjoying more time at home. It’s kept me grounded ever since. I hope my words touch people one day. Doesn’t ever writer worth his or her salt?
I guess there isn’t a ton going on right now. The looms of my imagination have ceased to shuttle for the time being. I guess I’m just putting words to paper in an effort to restart the machine. Maybe I’m treating this blog like a diary. Thats ok, too.
It’s been a little while while since I’ve written. When this blog kicked off, there were daily posts. Then it was every-other-day. Now, it’s been about one a week. I don’t like that.
It’s not that I think the world’s dying to know what I have to say. I could never be that arrogant. It isn’t even that I get my self-worth from the approbation of strangers on the internet, if you can believe that.
I don’t know…….I’ve been in a funk lately. Writers write. Here lately, I haven’t been feeling that compulsion, that old, sweet itch to create with words. Is that odd?
Also, I’ve been rewriting the book a good deal. I’ve opted to go ahead and publish it as an E-book through Amazon. It wasn’t what I wanted.
I wanted a traditional publishing house to help me tell Erin’s story. That doesn’t appear to be in the cards, and I’m not paying 3k+ for someone to sell me my own work as a self-publisher. Honestly, It isn’t pride. That’s just a good bit of cash to drop on a project while my wife is still on maternity leave.
Rewriting is always useful, though. I learn more about myself after I’ve read what I wrote. Faulkner once quipped that he never knew how he felt about something until he’d written about it. That’s true for me.
Sometimes, I wish we could rewrite life. Take God’s big, old backspace key and just start some things over, maybe even the whole shooting match, who knows.
I’d go back to seconds before Erin was born and start it all over. I’d assert that something was wrong and demand that things be done differently to save her from a life of cerebral palsy. Then I’d go to the day before my son was stillborn and rush my wife to the hospital, so they could save him.
I’d be a hero, then. I’d be God-almighty’s copyist, rewrites for everybody who wanted them.
I’d mess it up, tho, sure as God made little apples. For one thing, I’m a lousy typist. Could you imagine me sitting up at a big, cosmic typewriter fat-fingering extra letters into people’s lives and destinies? Yikes.
Then I think about. There’s nothing I’d change, really. If Erin weren’t the way she was, our story wouldn’t be our story. She wouldn’t be our Erin. We may not hit their milestones, but they don’t have our triumphs, either. Our life is a hectic, beautifully fulfilling mess. Most of the time, I’d have it no other way.
So, when it comes to rewriting, I guess I’ll just stick with the book.
People don’t appreciate the non-special needs entries as much. Maybe they think I’m a one trick pony and should hold fast to that which I know—namely, caring for special needs children. Thats where we’ll go.
So, here’s something parents of “typical” children don’t consider everyday: The guilt factor. Yes, we blame ourselves more than you’ll ever know.
Oh, you try to cheer us up. Our loyal cadre of friends is always ready to remind us that we had no way of knowing something was haywire during the pregnancy. And, even if we had some notion that everything wasn’t ok in there, what could we do about it? Good questions, and honest ones.
Still, every developmental milestone your baby misses feels like a stinging rebuke. There are alarms and blinking red lights of accusation when we hear doctors use words like “failure to thrive.”
Our child isn’t thriving……It’s like we’re gardeners unable to make a plant grow, no matter how much we’ve loved it and nurtured it.
Isn’t it our job to ensure our children thrive? That’s what we’re for, right? Of course, it is. So, if our kids aren’t thriving and it’s our job to see to it that they do, we deserve censure and guilt, right?
Not on your life.
The feelings we’re dealing with are natural and human, but viciously unfair. So what do we do about them? That’s the guilt. Now for the gusto.
We make like Elsa and let ‘me go. They really are anchors around our necks, spiritually and physically, holding us on the bottom. If you don’t break lose, you’ll ground. Oh, you’ll get by for a while.
You might even lie enough to convince yourself you’re ok. You’re good. We’re all fine. But, eventually, you’ll drown. The only way to save yourself is to kick loose. Take all of that negativity, all of that fear, and guilt, and angst and compress it into a ball in your subconscious. Now, throw it out. chunk it. Guilt and fear are dead things. Like all dead things, they stink after a time.
Do it everyday. Shed the negativity that keeps you from being the amazing parent you were born to be. Peel it away. There’s a new person underneath it, a person nothing can stop.
Those feelings will never be gone for good, but they’ll be contained, not fed, not watered. They won’t thrive……
Come out from under the shadow and live in the sun. Ask God to guard the door of your heart today and everyday. Be free in Jesus name. Pray until the word “free” is seared into your spirit. Be healed. The anchor is gone.
Remember going to church with your parents or grandparents and slid into the back of a little slot in every pew was a crumbling Baptist hymnal?
Usually, they were crammed back there with fans advertising funeral homes and little envelopes set out so the tithe could be handed in discreetly. It’s amazing what a store older country folk set by having something to give back to God. Many of our grandparents grew up in the Depression. Having enough to eat was a luxury. Having enough to give back was a notion so far-fetched as to be pure fantasy. So, when that generation had the opportunity to give, they did so with zeal. That’s another blog.
Always, the music minister would announce the lines in the hymn to be sung, and off you went with two—no more—worship songs. Then, you sat for while before standing to read the Bible.
Most of the hymnals from my childhood were holdover’s from the seventies. They were already none-too-gently used when I encountered them in whatever crumbling condition and church I attended at the time. And I loathed them.
First of all, until my sister showed me one Sunday, I didn’t know how to read one. Then I just didn’t like that kind of music. It was old and dead to me. It was ok for a blue-haired Gladys or Agnes, but a a teenage boy? Nah.
I was so narrow-minded back then. I engaged in the same blighted, dogma that I thought those hymns represented. I’ve softened a ton since then.
The centrality of worship to the life of a Christian is so obvious that to go into it would only belabor the point. I’d missed the boat on hymns.
What hymns weren’t was Gregorian Chanting. They weren’t the rise and fall of the Litany or Rosary. There’s absolutely nothing wrong with those things. A big bell high up in a tower calling worshippers to vesper services still holds a certainty serenity. There’s a haunting beauty in the chant.
Hymns, the original compositions, were rebellious music, a new theme on a concept as old as Psalms, tradition as old as the first human breaths: worship.
I’d underestimated them. Now, when I appreciate them, churches are doing away with them, it seems.
Please don’t @ me and write me letters about this. I love modern worship, but there’s something soul-filling about hearing a congregation sing “Old Rugged Cross” and “Amazing Grace” in unison, some depth of feeling that reminds you of porch-talks, cricket song, Sunday supper, and a world where things are ok.
An elegy is a poem. I’ve played fast and lose with the literary lexicon and you, good reader, I fear.
But an elegy is the only way I can describe how I feel. An elegy is a lament, and a lament is a woebegone thing.