I don’t know what to do

This commercial got my attention. Watch the little boy at the 20 second mark very closely…

Amazing, isn’t he? I’d seen that commercial four or five times before I noticed his remarkable ability. Later on we were watching the swimming and gymnastics and there were a few fifteen-year-old kids competing, and winning in London. I did the math and told Jeni that Jackson had a lot of work to do to be on Team USA for 2020. I asked Jackson, “Do you want to swim a few hours a day for the next eight years and see if you can make the Olympics?” I didn’t know what to say to Caedmon.

He’s the biggest TEAM USA fan, other than a parent, I’ve come across. We’ve watched water polo, women’s field hockey, indoor and outdoor volleyball, archery, lots of swimming, gymnastics, soccer, and a brief glimpse of shooting. He even opted out of a trip to the pool to watch the Americans compete.

As I fought against his ever tightening tendons and hyper sensitive leg muscles to get him in his pajamas tonight, my mind went back to the boy in the commercial. I decided it would be far better to lose a limb that have Cerebral Palsy. That little boy could find a way because the rest of his body works just fine. Caedmon’s disobedient, frail body is why I didn’t have a “you can do it!” speech for him to match Jackson’s. Tonight, I was mad at Cerebral Palsy.

Would it be salt on a wound to tell him he could make the 2020 games? While I know the odds are overwhelmingly against any of my boys donning Olympic gold, I wouldn’t discourage them from dreaming. But it’s different with Caedmon, at least I think it is. It’s not as simply as flicking the glove from his weakened arm so his strong one can make the throw. Even the Armless Archer has the benefit of an able torso and extremely high dexterity in his legs. Caedmon’s got fantastic enthusiasm, an unbreakable spirit, and infectious joy but his body simply doesn’t work like the guys and girls he’s cheering in London. I don’t know what to do.

Do I offer false hope? Do I take his fragile dreams, assuming he has those dreams, and drop them on the marble floor of reality? Should I push his brothers to be champions so Caedmon has someone he dearly loves to root for? Do I keep encouraging him to be an active spectator? Am I too pessimistic for thinking he won’t be like the boy in the commercial? Should it even matter?

Maybe it shouldn’t matter, but Caedmon loves sports. He yearns for the pageantry – marching bands, national anthems, roaring crowds, and proud

Go Pack Go!

parents. He relishes victory and mourns defeat. Rivals make the games all the more enjoyable for him. He’s abandoned my Braves for his aunt’s Cubs; forgot my Falcons for his grandpa’s Steelers before betraying Pittsburgh for his uncle’s Packers. His favorites are when his team is battling mine or his Pa-G’s. Thankfully, everyone he knows roots for the ‘Noles, otherwise there might be a little boy sleeping in the garage. Perhaps vicarious participation is more than enough for him, but he’s got to wonder, doesn’t he? Should I ask him? I don’t know what to do.

Sorry for having no answers in this post. I apologize for offering no inspiration or encouragement. But I’m at a loss with this one, and have been for some time. I don’t want any of my boys to be happy; I want them to be fulfilled from doing what they’re made to do. At the same time, I want them never afraid to take off for the second star to the right and straight on till morning. I don’t know what to do.

(I found this in my inbox right after I posted my article, “A Double Amputee Proclaims, ‘I Do Not run Aimlessly.’” Me of little faith I guess.)

Posted in For Parents | Tagged , , , , , | 9 Comments

Extraordinary Books: Why, O God? Suffering and Disability in the Bible and Church

I don’t recall how I heard of this book, but when I saw the title I felt compelled to get a copy. You don’t have to live long in the culture of the extraordinary to begin to wonder of there’s a reason behind the disability in your life. I thought about it, talked about, prayed about, and read about it, perhaps you’re curious too.

The foreword for “Why, O God?” was written by Randy Alcorn so it had instant credibility. Alcorn has a couple of books on the Nobody’s Normal bookshelf: Deadline, Deception, and Wait Until Then. He’s a renown theologian and prolific writer. If you really want to dive deep into the question of disability and suffering in the world I would suggest his book “If God is Good.” I trust him and his work completely.

Bookended with chapters penned by Joni Eareckson Tada, “Why, O God?” offers a survey of disability and suffering from every book of the Bible, a few chapters dealing with the ethical treatment of those with disabilities, and some that deal with the philosophical underpinnings of how our culture currently views those who suffer. The end of the book is the most practical and where I found the most helpful reading. With chapters written by PhD’s, MD’s, college professors, and directors of national disability research groups you will find insightful tips for befriending people with all variety of disability. The chapter titled Pastoral Care and Disability is worth the price of the book by itself. And pastoral care can be done by any of us,

Pastoral care simply means tending to the needs of another person with a motivation and manner that are rooted in biblical theology and love for the Lord Jesus. Pastoral care may be performed by any believer, regardless of office.

The chapter explores realities about suffering, causes, helpful ways to support and encourage those that have them, and even helpful ways to support and encourage those who care for the disabled. I have more underlined passages in this chapter than any other. Here are just a few:

  • The caregiver who helps a disabled person achieve control over some area of life will help that individual have a greater sense of self-worth and will help decrease frustrations that come with helplessness.
  • Of the core needs for people who are suffering with disabilities, relational challenges, though not immediately obvious, present significant needs to be met primarily through friendship.
  • The key is envisioning the world from the perspective of the mobility-impaired individual and moving to provide a proper level of assistance.

I feel like I’m doing the book a disservice to include so little of its rich depth, but hopefully you are enticed to read further. If the title of the book, Why, O God?, resonates within you I highly recommend picking it up. By the way, you can read one of my favorite excerpts from the book over at Discovering Writing – Poetic Prose: Joni Eareckson Tada

Posted in Uncategorized | Tagged , , , | 2 Comments

What if it had been me?

My family was just settling into a pre-dinner swim at Nana and Pa-G’s neighborhood pool. I’d spent the last few hours toiling like Adam in the back yard, and sat on a submerged bench with Caedmon in my lap. A group of Oak trees stood sentinel, protecting us from the blazing wrath of the setting sun. Jeni was enjoying the water’s assistance supporting our newest baby. Jack and Andrew were fully immersed, literally and figuratively, in their pool games while Toby’s swimmie-clad arms were tossing toys into the water.

I noticed four boys walking on the pool deck, about to pass behind us. They looked to be about ten years old. Each was wearing knee-length board shorts, but no shirt. Their hair was coarsed out from a day of chlorine and sunshine. Their eyes shocked from underwater explorations. Water splashed as their bare feet slapped the wet concrete, they were headed to a grass field just outside the pool’s gate. Some sort of ball game was in their future and I was struck with nostalgia. I spent hundreds of summer days just like these boys.

We were fortunate to live in a neighborhood with a nice swimming pool. Almost every weekday of the summer, early in the morning, I would walk barefooted to the end of Oakmont Court and turn left onto Pebble Beach Drive. About a hundred yards up the road was the crest of “the hill,” which led to our summer hangout. Most days a golf-cart would speed past carrying my friend and his younger sisters, whose hair would morph from snowy blonde to lichen green due to daily hours of chlorine.

All six of the Sprague kids spent summers on the West Lake Dolphin Swim Team, partly because we were able to get in the pool before its 11:00 AM public opening. My friends and I spent long days at the pool, catching footballs off the diving board, having my sister, Angie, remind us to put on sunscreen, being yelled at by lifeguards to stop running, playing Marco-Polo, Sharks and Minnows, and Dibble-Dabble, charging junk food on my parents account, playing all kinds of barefoot sports on the pool’s surrounding lawns, and having the occasional water melon war in the deep end. We were just like the boys from “The Sandlot,” and just like the boys I saw today. But what if I hadn’t been like them? What if I had been born with Cerebral Palsy? This thought T-Boned my nostalgic memories and I’m still feeling sore inside.

Prior to 1981 because Daniel’s not there. The Toby-clone in the middle is me.

Each of my siblings made bunches of friends around the neighborhood, and almost none of us were forced to share. Some did, especially me and my brother, but we all had a unique group we spent our time with. If one of us were totally dependent on the others how different would it have been? Would I have just associated with all Gina’s friends (Of my four older sisters, she is the closest to me in age)? Would I ever have developed an identity of my own? Would I have gone to swim practice even if just to watch? What will growing up and making friends be like for my boys? I guess we’re going to find out.

Outside of my neighborhood friends, who were and are my closest childhood pals, I met new kids playing sports. In the summers, I swam and played a gorilla’s version of basketball. In the fall I was on the pitch, throwing my body in the way of my opponents shots. (I could play some goal keeper, and I would be in the net for Team USA right now if I hadn’t been such a prodigy on the football field. Okay, maybe I’m reaching a little.) I played baseball in the spring. When city sports were dormant, I was playing roller hockey, tennis, “Flaggy,” wall ball, or golf. Eventually I found my way onto a football field, but you know that story. But what if my body hadn’t let my enjoy and succeed in the athletic arenas? I spent insane hours chomping on gummi bears, saving Princess Toadstool and Princess Zelda, and tearing it up on Blades of Steel, Goal!, and Tecmo Bowl, but gelatinous sugar and video games don’t lead to many deep friendships (that’s a freebie for all you Skyrim nerds out there). Would my siblings have accepted me as a constant tag-along who depended on them to eat, communicate, and use the bathroom? Knowing how often they came to my aid, in spite of my existence as rotten child, I’m convinced my big sisters would have unconditionally had my back. But, how would they have approached their hobbies? Where is the line between chasing your dream and including your dependent little brother?

Would my mom have ever opened “Uniquely Yours” in the mall? How many people would have gone without picnic baskets adorned with Uga? Would she have been involved with politics? I wonder who would be in office today if my mom hadn’t been moving and shaking for all those years. How does a mom get involved when she’s busy with her involved child? Would I have felt guilty? Would I have realized the sacrifices being made for me? Would they have even considered them sacrifices?

I loved my childhood. I could reminisce for days about Def Leppard and Bon Jovi, the 1994 World Cup and the 1996 Olympics, watching the Braves at their worst and in first, how the golf course was my Middle Earth, and the Goonie Trail was my great adventure. I hope my kids have as rich a childhood as I was afforded, but I know their’s will be different. Long gone are the days when parents simply let their kids run free from daybreak to twilight all summer. Beyond that, our boys are living a ‘lean on me’ existence. Jackson, Andrew, and Toby love Caedmon beyond my ability to articulate. Toby calls his oldest brother his best friend. He is one of them and they are his, it’s beautiful. But the time is beginning to dawn when they will develop personal interests. If I’d been born with C.P. I would absolutely have wanted to be included, but I don’t think I would have liked being the reason anyone of my siblings didn’t pursue a goal. At the same time, I might have struggled with jealousy as they accomplished physically what I inwardly longed for. Caedmon has the same interest in sports I had as a kid, but our experience with them is different. I can only imagine how the me I was then would have felt in his shoes, and braces. But I cannot imagine what he feels just being him.

We let the boys watch Otis Nixon’s Spider Man catch and Sid Bream’s game winning slide on the computer today. When we finished, I told them my recollection of watching Bream’s game winning run with my family. It was Caedmon’s reaction that reminded me of that moment, because he was nearly as excited watching the replay for the first time. He totally gets it. He loves without inhibition. He longs for relationships. But he’s also a little boy who wants to find adventure and run free. When those boys nonchalantly walked from the pool to the park, Caedmon was being supported and restrained by me. He wanted to swim, but was dependent on his tired, me-hearted dad who preferred sitting in the shade. He was the proudest one in the pool when Jackson retrieved a toy from the pool’s bottom for the first time; that’s who Caedmon is. But does he wonder what it’s like to explore under the surface? Would I have had those thoughts if his childhood had been mine?

I know this, I’m proud of all four of my sons. Had I been born with Cerebral Palsy, I like to think I would have glowed like Caedmon, but I doubt it. Were one of my siblings in greater need of their little brother, I like to think I would have brotherly-loved like Jackie, Drewsie, and Tobes, but I doubt it. I was a selfish child and sadly, I’ve yet to out grow it. My boys have childlike selfishness too, but they’re different. They know nothing of totally myopic living. Maybe that’s a better way to grow up. But moments like the one today cause me to wonder.

Posted in Uncategorized | Tagged , , , , | 2 Comments

Living with Cerebral Palsy: Mario Kart & Power Steering

Since its inception in 1992, I’ve been a fan and master of Mario Kart. I won championships on the Super Nintendo, shattered records on the N64, and continue to take checkered flags on the Wii. I’ve always been a Yoshi guy in case you wondered. Playing with my boys this morning I had to repeatedly correct young Andrew’s technique. Almost all young drivers make the same mistake – über steering. Full body, electrocution-like over corrections to the slightest indication of a turn leaves his poor driver spinning donuts while the other drivers lap him. See, the trick to becoming a Mario Kart Jedi (May the 4th be with you.) is mastering the art of subtle steering. It requires the deft touch of the Operation masters of old. Where I am a paring knife of precision, Andrew is a Dwarf’s battle ax of chaos. After I went Dale Sr. on Andrew and Jackson, I took Caedmon onto my lap to help him drive against his brothers.

I’m not sure which muscle groups are firing or which tendons are tight, but when Caedmon sits in my lap his legs and lower back stiffen and push his shoulders against my chest. It’s not an intentional act, but it is difficult to keep him sitting upright. He tends to slide down my legs, his toes pointed and legs rigid like an Olympic diver entering the water, and his shoulders inching toward my belly button (sorry for that mental picture). Eventually he must be pulled back against my torso, where the gradual slide begins anew. He has better control of his right hand than his left, so he will grasp the controller and I’ll place his thumb on the gas and my thumb on top of his.

Jackson has the race picked and the red light has already burned. Caedmon’s left arm is parallel to the floor, straight as marine’s sideburns. I take his left hand in mine and with delicate force bring it to the other side of the controller. The red extinguishes and the yellow illuminates the screen. Caedmon gets excited, his body stiffens, and he slides further down my leg. Just before the light turns green, I hitch him back in place, reset his hands, and the race is on.

Andrew’s whirling around like the Star Wars Kid, Jack, following in dad’s glorious Kart race marks, carefully navigates Toad around the course (he prefers Yoshi too, but I pulled rank), while Caedmon and I drive Wario. It reminded me of when a car’s power steering goes out. There is tension in seemingly every muscle threaded through Caedmon’s frail arms. A quarter-inch tweak on the four-ounce Wii remote requires the force (not THE Force) associated with opening the trunk of a 1985 Cadillac. His body simply doesn’t move the way we want it to. He lacks the dexterity to manipulate the buttons for more complex games, but he’ll shoot hoops on Wii Sports Resort, spin the Wheel with Pat and Vanna, and hit the links on Wii golf. Other times he gets help from me, Jeni, or any number of other people who love him and like video games. The competitor inside me wishes his little Kart had power steering, but I know he simply loves the time shared with the Sprague boys and I’m good with that.

Posted in Uncategorized | Tagged , , , , | Leave a comment

Oh Boy!

Maybe a house full of girls is just like mine, but I doubt it. Their combined age is 20, but the combined testosterone of my four boys has already reached Macho Man Randy Savage levels (Oooooooh Yeeeaaaaahh!). Poor Jeni.

Caedmon, Jeni, and I were finishing a nice lunch of grilled cheese and pretzels, chocolate chip cookies were baking and providing a soothing aromatherapy, and Jack was lost in a creative wonderland of paper and markers. It was serene, almost Mediterranean; but the Sirocco was moving down the hallway – Andrew and Toby, armed with cardboard box helmets, pin-balling toward the living room.

A new game was born in the man-sion this afternoon: Boxosaurus. When all twelve cookies were consumed (about twelve seconds after they left the oven), Jack donned Toby’s box helmet and the game was truly on. Like two cymbals in the hands of an uber-enthusiastic middle schooler, they crashed into one another over and over again.

Jeni had taken Caedmon down the hallway and I walked down to discuss a trip to Highlands. As we spoke I was rear ended by Boxosaurus Andrew and the sleeping matador stirred.

I stepped away from the door as Drewsie backpedaled for another charge. He ran at me full speed, ready to conquer Mt. Dad. As a firm believer in establishing a clear understanding of cause and effect relationships, I stepped to the side. My darling child crumbled into the wall and fell to the floor; he was laughing harder than I was.

The bull fighter routine continued with Jack and Andrew for roughly half a down more approaches. Like a drunken brawler, they threw themselves toward their mark only to find their mark had moved. Banging into walls, colliding into walls, and smashing into Caedmon’s wheelchair before Jeni insisted I was cruel and should grow up. She was right, so I threw a copy paper box over my own noggin and moved the ruckus into the master bedroom.

A few well-timed assaults from Boxosaurus Andrew and Jack found me laying against my bed being pummeled by cardboard. Caedmon had moved in to referee the bout, but before he could rule the K.O. – POP!

My eyes were closed, Jack was right in front of me. The last thing I felt was Andrew bouncing himself off my left shoulder.

I’m rubber, he’s heavy and free of inhibition,
what bounces off me, shatters body length mirrors.
(That’s how it goes, right?)

I opened my eyes to find Andrew lying against a once vertical mirror, now  shaped like a taut bow and shattered like a car windshield after a crash. He was wide-eyed, not sure if he was hurt. I picked him up, placed him to my right, and assessed the situation. All the glass was still in the frame, save a few tiny pieces I quickly picked up. Knowing everyone was safe, the laughter began anew, my laughter. The boys were shell-shocked and headed back out into the living room. Jeni came in with that “I told you someone would get hurt, ya big clown” look on her face.

She was wrong though; nobody got hurt, and it wasn’t even close. Who hasn’t fallen through a five-feet tall mirror unscathed? It’s part of growing up, part of becoming a MAN!

Toby and I took the shattered mirror to the trash. Jeni made plans for a Wal*Mart trip for a replacement mirror. Caedmon, Andrew, and Jackson played Mario Kart on the Wii. And the boxes lay in wait for the next round of Boxosaurus.

Collateral damage. Man-tastic!

The fun continued with Closet Money Bars.

Posted in Uncategorized | 6 Comments

Extraordinary Books: Schuyler’s Monster

I hesitate to review authors on their literary technique; it would be akin to me critiquing igloo architecture. However, I will address content within the books I post on Nobody’s Normal. I recently finished “Schuyler’s Monster: A Father’s Journey with his Wordless daughter” and it absolutely fits on the Nobody’s Normal bookshelf. Robert Rummel-Hudson writes from the familiar, at least to me, perspective of a dad coming to grips with his child having a disability. The shock of the diagnosis, the instant sense of ignorance, the struggle between the professional’s expertise and the parent’s intuition, etc. While living in this extraordinary culture has moments of beautiful sunsets, it also has hurricane moments and Rummel-Hudson’s family weathered a few storms.

Reading of their intense battle with the Special Education teacher, the school board, and the system were reminiscent of the frustrating moments my friends have shared. Schuyler (pronounced, Sky-ler) was bullied by the teachers who were trusted to look out for her, using her inability to speak as their cloak. It was an appalling account. I enjoyed his retelling of their discovery of communication devices; he calls it her “big box of words.” Jeni and I have been there, along with many of you – the rose of technology and the thorn of expense.

Schuyler has something called Bilateral Perisylvian Polymicrogyria (BPP); I’ll let the author explain.

The monster has a family name, an imposing handful of syllables the doesn’t feel natural on the tongue no matter how many times you say it. Polymicrogyria. Despite its heft, however, the word breaks down into very easy pieces. Poly, or “many.” Micro, or “small,” and gyria, which are the folds in the surface of the brain, the things that make a brain look like a brain. A typical brain is composed of many different folds, but in a brain afflicted with polymicrogyria, there are too many of these folds and they are smaller than they should be.

As you might guess, mom and dad were ignorant of BPP prior to Schuyler’s diagnosis. Just like Jeni and I were ignorant of Cerebral Palsy, and most other extraordinary parents were before their child was diagnosed. It’s indicative of our Normal culture. Struggling to allow their wordless daughter to communicate, striving to get an accurate diagnosis, and investing their entire selves into their daughter’s world were catalytic for their own drifting apart. Rummell-Hudson frankly shares the destructive patterns that led to infidelity in their marriage. Their’s is a warning for all extraordinary parents to heed.

The author also shares some deep struggles he has with God, or the idea of God. Who among us hasn’t asked difficult questions? Who is immune from doubt in light of personal struggle? He is unflinching in his retelling, honest and real. Ultimately, for Rummel-Hudson. the most profound question he ponders is how Schuyler is so radiant and hopeful in spite of her diagnosis. “She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closes to God.”

(Please be aware this book has some rough language, deals with some unfortunate decision-making, and has at least one incident where a description that, while truthful, was unnecessary to the story and depicts immoral behavior. Schuyler’s Monster is compelling and it will resonate with many, but its a PG-17 read. Just FYI.)

Posted in Uncategorized | Tagged , , | 6 Comments

Robert Rummel-Hudson, Speaking of Normal

“I don’t care what’s wrong with her,” she said. “If she can’t behave like a normal kid then she shouldn’t be out in public with the rest of us. Maybe you should have her institutionalized if she can’t do any better than that.”

Taken from Schuyler’s Monster, by Robert Rummel-Hudson. The quote came from an unsympathetic stranger in the grocery store.

Posted in Speaking of Normal | Tagged , , | Leave a comment

Autism Awareness Month

Nobody’s Normal is wearing different clothes for the month of April – blue for Autism Awareness. Joining advocates all over the country, this is just a simple way to raise awareness and increase conversation. I’ve got a few friends on the spectrum, and I’m glad to do my part.

Tomorrow is a world-wide campaign to “Light it Up Blue” by picking up a blue light bulb and installing it on your front porch. You’ll see the Sydney Opera House, Christ the Redeemer in Brazil, The Empire State Building, The Cairo Tower in Egypt, The Paris Stock Exchange all shaded blue, but you won’t see the White House joining the cause. A friend has been personally involved in the campaign to get President Obama to participate, and you can read about it on his site (Baffling, The Missing Color, Letter to the President, and Obama’s Automated Response).

You don’t have to know all the answers to Light it up Blue. Just grab a blue shirt, install a blue light, change the background on your blog, or play Elvis’ most well-known Christmas tune all day, it’s up to you.

Autism Speaks.

Posted in Uncategorized | Tagged , , | 1 Comment


“There are times when our hope despairs; these are the times our despair must learn to hope.” – Martin Luther

The following is an attempt to work out my thoughts and feelings through poetry. I’m not exactly sure what qualifies something as poetry, but I had poetry in mind so I say it counts. My boys are reading a book called “Dream Something Big: the Story of the Watts Towers.” These nearly 100-foot-tall towers were crafted by a man out of seashells, discarded tiles, mirrors, and rocks – trash made triumphant.

Nothing I’m about to share qualifies as trash, but they’re the elements that went into writing my poem. Because Caedmon’s getting bigger and Jeni’s getting more pregnant, loading him in and out of the car, getting him bathed, and lifting the new, heavier wheelchair are about to become impossibilities for her. I’m in a longstanding conversation with a friend asking, “where is God in all this?” Did He cause it? Did He allow it? Was He taken by surprise? Was it an act of war from Satan’s camp? Some days I know, others I don’t. I’m considering accepting a new job that will have me out of the house three days a week. I need to provide, but what about Jeni and growing Caedmon?

Real circumstances.
More questions.

After a canceled meeting, I sat alone with my wine & cheese sandwich, Schuyler’s Monster, root beer, and notebook and I began building my own little, emotionally cluttered Watts Towers. I call it, “Complicated.”

I’ve grown convinced of how little I know.
I don’t know how: physics, mathematics, chemistry, genetics…

Worse still, I don’t know why: brilliant minds and damaged brains, refreshing breezes and destructive hurricanes…

None of them are Normal, but one of my sons has Cerebral Palsy. The wheels light up and it glows in the dark, but it’s still a wheelchair. The iPad is cool and a dog will be fun, but they’re poor replacements for voice and strength.

Cerebral Palsy is a Jane Austen novel, and I struggle with my alphabet.
How did his brain get damaged? Lack of Oxygen, simple as A-B-C.
Why did his brain get damaged? Um… Because he, uh… Well…, Austen.

Some say there is no why. They believe everything’s causeless, purposeless, wonderless. It is what it is; deal with it.

I hate that idea.
Because that idea leads to hate.
Hate them. Hate me. Who cares?

Others say there is a why. Things do have a cause, a purpose, a reason for wonder. It is what it is; look for it.

I like this idea.
Because this idea leads to hope.
Hope for a reason. Hope for tomorrow. Someone cares.

The Bible says, “faith is being sure of that we hope for.” I believe God is there, but I don’t know what to hope for. I want Caedmon to run, play, feed himself, chase his friends, dance, speak his stories, dress himself, and bake brownies if he wants. Can I hope for these things? I’m sure I’m not sure they’ll ever happen.

Faith as small as a mustard seed can move a mountain,
but a mustard seed is a mountain next to my faith.

Yet every trip to the physical therapist is motivated by hope.
Each time we practice making a P sound we’re prompted by hope.
Hope for improvement. Hope for one more step, one more sound,
one more reason to… hope.

Caedmon is the springtime.
Cerebral Palsy is the pollen.
Every time my hope is smothered in a yellow cloud of despair, Caedmon’s relentless, transcendent joy washes it away and teaches my despair to hope.

I don’t know exactly how, but I pray.
I’m not sure if it’s foolish, but I hope.
Perhaps, on days when they meet, my faith will be strong.

Maybe a mountain will move.
But where did that mountain come from?
It’s complicated.

Posted in Uncategorized | Tagged , , , , | 4 Comments

Trying to be Normal

Have you ever tried to fit in? I have, and it didn’t go well. The setting was Blue Ridge Elementary School in Augusta, GA. It was about 1988 and I was a fifth grader desperate to be cool. The cool kids wore Coca-Cola clothes, Umbro shorts, and Reebok Pumps (not necessarily at the same time, but how cool would that have been?). My parents didn’t fall for the hype machine, so I went without the totally awesome threads, but I still found a way to fit in.

I guess everyone wanted to be like Uncle Jesse (this one, not this one) because hair gel was all the rage. But I didn’t know hair gel existed; I just thought everyone had wet hair. The first thing I did when I got to school each morning was lean into a bathroom sink and drench my head – sopping, soaking wet. As my hair dried, my bladder grew sensitive and a trip to the bathroom / hair salon occurred. Why didn’t anyone stop me? Where were the loving, caring adults in my life? How could they just stand aside and let me wash any chance of becoming cool down the drain? The fact that I was trying so hard to be cool just proved I was far from it. This is exactly what Jacob was talking about in yesterday’s “Speaking of Normal.”

Normal is as arbitrary, unfair, and cruel as Cool. Who decides? What qualifies? ’80s cool is ’90s lame, and ’90s cool is today’s “really?” Not being Cool is temporarily miserable, but not being Normal can be incurably catastrophic.

I know having Cerebral Palsy requires extra attention, mobility accommodations, and communication assistance. I know living with Autism demands unorthodox parenting, extra precautions, and creative relationships. Blindness, deafness, Multiple Sclerosis, NBA height, NFL size, uncommon brilliance, or fiery red hair all bring with them uniqueness, specific reactions, and sometimes specific clothing. They’re all different, none are Normal, yet collectively they’re all the same.

No one has to try to be Normal, because nobody’s Normal. Like shards of a stained glass window, we’re all unique, purposeful, precisely where we should be, and part of a bigger, more beautiful picture. Red need not strive to be green, and small need not envy the large. It’s only when red begins to believe his hue is Normal that problems arise.

Robert Rummel-Hudson wrote in his book, “Before we ever moved there, I bought Schuyler the obligatory T-shirt (Keep Austin Weird). A college town and hippie haven, Austin was the perfect place to bring Schuyler. It was a place where everyone was weird, which meant no one was.” It’s just a way of saying nobody’s Normal in Austin, TX. Wouldn’t it be great if that were true everywhere?

Gotta love Austin.


Posted in Uncategorized | Tagged , , , , , , | 5 Comments