Asleep

“I shall need to sleep three weeks on end to get rested from the rest I’ve had.” –Thomas Mann, German novelist

Have you heard of the book by Adam Mansbach called Go the F**k to Sleep?  It’s the modern parents’ hilarious rant-in-a-book, a bit of humor to get them through those times when the only desire they have in this entire world is to sit alone on the couch with a glass of wine in peace while the sweet little cherubs slumber upstairs. Lately, I’ve been considering writing a letter to Mr. Mansbach. I’d like to suggest another book for the teen years: Get the F**k Up! 

Allow me to explain.

On Friday morning, I approached the closed bedroom door. There is a half sheet of notepaper taped horizontally onto the upper right quadrant which reads, “Good Parking Ass Hole”, underlined twice for emphasis. It’s something Olivia found on her car a few months ago, to which she has taken a bizarre liking. Some stranger put it on her windshield one afternoon last year while she was at the July 4th town celebration. We both thought it was amusing that the composer of this well-placed note wrote his insult as two words instead of with the correct spelling which, in case you were wondering, is asshole. She admitted it was a poor parking job, but doesn’t apologize for it. “Well, there was no place else to park and I had to fit the car into a space that was SO hard to get into!” 

If only I could find that asshole and tell him how much she loved his little message.

I knocked on the door softly, hoping for the word that tells me she is the responsible version of my teenage daughter today. The word is “Yep”, spoken with her awake voice rather than her sleepy one. The tone and strength of the “Yep” is what determines which scene will be before me when I crack open the door. Will I find her still in bed looking at but not actually focusing on me and mumbling, “What? What time is it?” Or will I find her on the floor sitting cross-legged in front of the mirror putting makeup on her already gorgeous face? I always, always, hope beyond hope for the latter.

Not hearing any response, I sighed, no, I pushed air out of my lungs with pursed lips and the pissed-off attitude of a frustrated mother fighting a relentless battle. Cracking open the door to my daughter’s bedroom, it was not the responsible version I found. It was the other one, the one that makes me wonder where it all went wrong. In my humble opinion, it’s very simple: set the alarm, turn the alarm off, stretch, and get the f**k up. Alas, the figure on the bed was motionless. It was 6:37 a.m. on a school day. Considering school would start in less than an hour, and she still wasn’t showered or dressed, her first stop will be the B House office to pick up her late pass and sign up for yet another detention.

Detention at our high school starts out as a half hour for the first three tardies. After that, late students get what is called an ADP. Not sure what the acronym stands for, but I know this particular detention lasts two and a half hours. Third marking period has barely started and my daughter has already racked up three ADPs. In other words, she is CHRONICALLY tardy.

I’ve finally come to realize at this late date, that detention is not enough of a deterrent. How many times as a teacher have I gotten angry about parents who expect the school to parent their children? How many times this year have I done the very same thing?

So when Olivia came downstairs into the kitchen, I handed her the keys to my car. “You’re taking my car to school today.” It’s the consequence I’ve decided upon and one I hope will be effective. She loves her 2011 Subaru Forrester. She does not love my 2008 banged-up Toyota Sienna mini-van (I wasn't the one who banged it up. Let’s leave it at that).  She didn’t dare say a word. She was already an hour late for school. The next consequence will be worse—Ken or I will drive her there and pick her up. She’ll really hate that.

Will my plan work? I can’t predict the outcome. What I know for certain is before long, she’ll have to get up for college classes and community service work and after that, a job in the real world!  There’s no detention for any of those scenarios.

If my mini-van/car service consequences fail to get her out of the house on time, I'm out of ideas.

I just hope I don’t find a note taped to my bedroom door tomorrow morning that reads, “Good Parenting Ass Hole”, underlined twice for emphasis.

Seth

                                                                                         

“You've got a friend in me
You've got a friend in me
You've got troubles, well I've got 'em too
There isn't anything I wouldn't do for you
We stick together and we see it through
You've got a friend in me
You've got a friend in me” --from ‘Toy Story’, Randy Newman

Seth jumps out of his mother’s car before she can park it, and runs over to join Cliff and me. Arm in arm and smiling, they walk together into the building and head down the stairs to their track and field practice. I follow behind, and, watching their progress towards the gym I’m struck by their similar profiles: each one is about five feet tall, stocky with slight bellies and muscular calves. They are both, in typical “mom speak”, adorable. Theirs is a relatively new friendship, slow to start but very promising. All during the practice, they never leave each other’s side, except when it is one or the other’s turn to race. It’s beginning to look like what one might call a “bromance”, a true friendship between a couple of guys.

We first met Seth almost three years ago at Special Olympics bocce ball practice. That first summer the friendship hadn’t really taken hold. It was a matter of timing. Neither of them attended every session, so they didn’t get to know each other well. Last summer, there was a slight shift in the way they interacted. It was enough for the breakthrough: Seth decided Cliff was pretty cool. Besides, Seth had a stubborn insistence on taking his turn last and Cliff didn’t have a problem with that. Seth, in turn, didn’t seem to mind Cliff’s interminably excessive windup before the throw.

When their birthdays came around, they invited each other to celebrate. Now, with the start of Special Olympics track and field, there will be more regularity to the get-togethers, a time they can look forward to every Monday evening. Each practice holds that extra something, beyond the fun of the sport itself. Seth’s friend Cliff will be there; Cliff’s friend Seth will be there.

As practice comes to an end, the two of them walk around the gym to cool down before the coach’s instructions. Vickie, Seth’s mom, and I sit in the stands cheering them on. We watch as they round each corner and I’m reminded of a sepia-toned greeting card, the one where two people stand with their backs to the camera, photographed as they gaze at something off on the distant horizon. It feels a little bit like a Hallmark moment and I can’t stop smiling. I have wished so hard for Cliff to have a very best friend since we moved here fourteen years ago. A friend who likes Cliff for the person he is, without expectation of conversation or a need for anything more than Cliff is capable of giving. It turns out, neither one exactly has a gift for gab. Somehow, though, they “get” each other!

Friendship sometimes rests on a tenuous thread, especially in a world such as Cliff’s and Seth’s, where parents are in control of arranging outings, and work, schedules, prior commitments, and timing is everything. It’s essential for the moms to like each other as well, because our kids aren’t independent. But the desire to belong is a fundamental need of every human being. We’re not meant to be alone, and there is, in friendship, a happiness factor that one can’t get any other way. Cliff and Seth are no different than other people in that respect. It is a need as essential as food, drink, and shelter. There is a poverty of the soul experienced by people living without friendship or camaraderie with another human being. It’s the reason parents like me will go to the ends of the earth, and be relentless in the search for our kids’ place in the world, especially when they may have difficulty trying to find it themselves.

Such beauty there is, everywhere I look—pink chiffon, white crinkly crinoline, sparkles on new snow, a blood-red moon just settling into the orange-pink sky, a blooming cherry tree about to burst its blossoms, cascades of light on a fireworks night in summer, frosted chocolate cupcakes. Now, added to this hopeful list are the images of Cliff and Seth running, walking, strolling breathless around the track, arm-in-arm on a perfect Monday night.

Grandpa Broccoli

“I love broccoli in the morning.  I love broccoli in the night.  I love broccoli every day, every night.  I love broccoli with all my might.” –silly song by Tony Meloni (My Dad)

I didn’t know either of my grandfathers very well.  In fact, my paternal grandfather died the year I was born.  There are only shadowy recollections of my mother’s father: There was the throaty laugh, the ever-present cigar clenched between his widely-spaced two front teeth and the dark dampness of his wine cellar.  He tended to be rather stern and, though he loved us, he wasn’t demonstrative. Certainly he wasn’t the type to sit beside us reading stories or taking us for walks. I don’t recall him being anything like my father, who believes in “hug therapy” and has fooled every little kid who has walked into his house into believing there’s a dog in the next room, with the best imitation of a canine I’ve ever heard. He even owns a Goldilocks and the Three Bears puppet, the flipover kind with Goldilocks on one end, the three bears on the other.  

 My father loves every one of his seventeen grandchildren and has a unique relationship with each one of them.  These days he tires easily, but still insists that the younger ones be allowed to make noise and enjoy the time they spend at his house.  He likes to say, “Look at that! I love to see these kids running around. It’s just wonderful to have them here. I tell you, it’s the best feeling in the world.”

 He is Grandpa to all of them except for the second grandson. To that one and that one only, he is Grandpa Broccoli.

When he was born the day before Dad’s birthday, my father arrived at the hospital concerned and anxious to make things all better for me.  I had said the words Down syndrome on the phone, but when he sat next to my bed, I realized I needed to use the antiquated term, mongoloid, to make him understand.  He kept patting my arm and telling me the baby would be all right.  At the time I took it to mean that he thought the baby would “grow out of it” and that he misunderstood.  In retrospect, I think it was simply an affirmation of his hope and his faith in our family’s ability to make everything all right for this child.

The significance of the closeness grandfather and grandchild share is not lost on my husband and me.  There are friends, but no best friend with whom Cliff can spend the hours, and no cousins his age who take an interest in him when we visit.  But on our trips to New York, when Dad enthusiastically greets him with “It’s Clifford Broccoli!” they both erupt into peals of laughter; perhaps my statement that Cliff has no best friend is not altogether true. Cliff has an appreciation for the ridiculous, and my father has a particularly proficient talent for silliness; even at his age he remembers the words and phrases that make kids laugh.  His imagination for the preposterous appeals to Cliff’s unique sense of humor.  (“I’m getting you broccoli for your birthday!” and “It’s time for Grandpa to get all the broccoli and put it in the toilet bowl!”)

The unique connection they have is unparalleled. As my son has gotten older, my eighty-six- year- old father is the only one of my family who has been able to go with the flow, as it were, of a kid with the sensibilities of a young man and the frustrations inherent in having a disability.  He has great difficulty with communication so that talking to people can sometimes seem like too much work. But Dad’s approach is simple: start singing, tell a silly story, and then segue into easy conversation that requires yes or no answers.  It works every time.

This month marks twenty-seven years of celebrating their birthdays together. Every year is the same: they sit at the dining room table, chairs pushed close together. They grin broadly as we sing “Happy Birthday” to my mother’s accompaniment on the piano. When it’s time to blow out the candles, I’m pretty sure Dad only pretends to blow so that Cliff can get the undiluted thrill of blowing them all out himself.

 

The silent prayer I often whisper for please just one more year has been answered time after time. But time can be our friend, or not. When the day comes that Cliff is blowing out his candles without his buddy next to him at the dining room table, I know I will have to explain the unexplainable.  But I’ve already decided what to say.  I’ll just tell him he’s been assigned a new guardian angel.

 

27

"On the day that Clifford was born, on the day that Clifford was born, on the day that Clifford was born,the angels sang and they blew on their horns, and they danced, they danced; they smiled and raised up their hands on the day, on the day that Clifford was born." --song from Cliff's Red Grammar CD.

Remembrance is sweetest oftentimes from a distance. We can recall with more clarity the wonderful and essential parts of a memory, especially when that memory, once bittersweet, has released its hold on the bitter aspects of that time.
I turned 27 in October of 1984. I was five months pregnant with my first child. It was a time of such excitement among my family members. There had not been a baby born among my siblings for fifteen years. This baby would be only the second grandchild/nephew. The whole universe revolved around the anticipation of his arrival.
Naturally, once he got here, and everyone got over the shock that he had Down syndrome, the spoiling began in earnest. Little blue shirts and tiny socks, teddy bears and a clown with a sweet face, the softest blankets, and all the accoutrements that a baby could need--it was all somehow contained in our tiny apartment on Leicester Street.
He learned his first sign at one. Milk. (take each of your hands and squeeze them, open and close, as if you were milking a cow, alternate as if you have one cow's teat in each hand) Other words followed--snack, juice, mommy, daddy, more--until by the time he was four, he had acquired a bank of approximately 350 words.
When he learned to walk, what a celebration that was! It seemed to take forever. When he finally took those first tentative steps alone, he was
twenty-two-and- a- half months old.
He started preschool at two, kindergarten at seven, middle school at almost fifteen, and then spent six years in high school. He was a pioneer each time, being the first student successfully educated in inclusive classrooms in our town. His greatest success was never academic; it was in everything he taught to others.

His birthday is today. He has now reached the age I was when I gave birth to him! Where did the time go? The days seemed long, but the years flew by.

This morning I went to wake him for work. In repose, he appears almost angelic, not at all like the bear he was when he went to bed last night. As I lifted the blinds and let in the sun, he sat up straight from a deep sleep, the way he always wakes up. There's no in between--just like that, from prone to sitting up in two seconds flat.

"Good morning, Cliff", I say softly. "Today is February 28 and today is your birthday." He sits up a little straighter and smiles sleepily, reaching one arm out to hug me. His birthday is the best day of the year, better even, than Christmas. We choose a favorite shirt to wear to work. He loves his job at the cafeteria at our local high school, where he helps hand out milk cartons and water bottles to the students, loads up the cart to bring the snacks where they belong, and fills up the juice machine. After he graduated in 2007, the cafeteria ladies couldn't bear to let him go. He's been working there twice a week ever since. Sandy and Joanne and Lou will wish him a happy birthday and give him a ridiculously age-inappropriate animated stuffed animal(which he will love).

The Taylor tradition is to take the birthday boy or girl out to dinner at the restaurant of their choice. TGIFriday's chicken and pasta bruschetta wins out. Last year the staff thought he was so adorable, his dinner was free.
Afterwards it's home for his favorite lemon cake and a pile of presents so high that my husband will look at me and sigh; I confess to going overboard with the  charge card.
Cliff will sit in the lotus position (he's oddly flexible this way) on his chair at the head of the kitchen table. This seat usually ascribed to one in authority is not accidental. Cliff's pretty much in charge around here.
Then we sing happy birthday to the accompaniment of his grandma's piano CD, a tradition of many, many years.
I think his favorite present will be the karaoke machine. All five of us will crowd around it admiring and exclaiming and doing a little singing.

He is truly king for a day.

He'll be in bed by 10, asleep by the time I get to the third page of Mercy Watson to the Rescue. The lights turned out, I'll kiss him on the top of his head and tiptoe out.

It seems the more things change, the more they stay the same. This boy, a child at heart, but a gentle man simultaneously, has single-handedly wrapped his love around each of us, making us better people and a more bonded family than we might have been. We would do anything for him.

Tonight when I step out of his room and close the door, I predict I'll look back, like I always do, at February 28, 1985 and remember it all, from start to finish. And I will look heavenward and smile.

(Mis)adventures in Dining (Parts one and two)

 "Animal crackers, and cocoa to drink,/That is the finest of suppers, I think;/When I’m grown up and can have what I please/I think I shall always insist upon these.”—“Animal Crackers,” Chimneysmoke, Christopher Marley

                                              Part One

“Conversation” with Cliff in the car the other day:

Me:  “Cliff, we’re going into this restaurant, but we’re not eating there. It’s not time for dinner yet. Okay?”

Cliff: “Yeah”.

Me: “We have to meet the man who is doing the music at your birthday party. It’s not time to eat. Do you understand?”

Cliff: “Yeah”.

Once in the restaurant, Cliff proceeds to take off his coat and get really happy. He is ready to be shown to his table.  Crap.

Me: “Cliff, remember what I said. We’re not eating here. We’ll do it some other time.”
Cliff: “No!” (Translation: What?! You did NOT say we couldn't eat here!)
Apparently, the only words he heard in my preparatory warnings were “restaurant”, “eating” and “dinner”.
Once we’re in the meeting room, the chair he chooses to sit on is ten feet away from mine. His facial expression is the exact opposite of the yellow smiley face guy. L  

After all, we are in a restaurant. In his mind, there is no purpose to being there except to sit down, order food and then eat it. I do understand how he feels. It’s like how I feel when I walk into Nordstrom. I ask you, would I walk out of there without buying that really cute jacket that makes me look awesome?

I think not.

We spend the next 20 minutes (during which the DJ forgot to show) glaring at each other.

The time period between in- the- car and in- the- restaurant (about 30 seconds) served as a frustrating, but familiar, segue from my warning (two) and an affirmation (two) of that warning, to complete denial of that warning.

 The next night, I did meet with a very apologetic DJ. Guess who I didn’t bring with me. (Three guesses, the last two don’t count.)

                                    (Mis)Adventures in Dining  (Part two)

Eating with Cliff is truly an experience not to be missed. There is always a story to tell afterwards.

First of all to look at him, your initial observation would be that he has Down syndrome, he’s on the short side, and he has a great smile. Besides that, most people would agree Cliff is also a young man who appears to be at least twenty-something. This is why it confounds my husband and me when we are asked the following questions upon entering a restaurant:

Ken: “A table for three, please.”

Hostess: “Sure. Would you like a children’s menu?” (I fake - look around and behind me and testily reply, “Well, since there aren’t any children with us that would be a no.”)

Well-meaning waitress #1: “Do you want me to bring a top for his Sprite?”

Well-meaning waitress #2:”Would you like me to put his drink in a children’s cup?”

Well-meaning waitress #3: “Hi there! Would you like some crayons and a coloring book?”

Same waitress: “Or we have some plain paper and colored pencils. How about those?”

Same waitress: “Ok, well, I can bring a pack of cards to play with while you’re waiting. Would you like me to bring them over?” (She is so sweetly eager to please, I keep my composure, smile, and tell her he’s not a fan of any of those activities.)

This penchant for restaurant staff to treat my grown son like a child is both infuriating and incomprehensible. If you work in a restaurant, I am hereby instructing you to say nothing but hello, how many, and are you ready to order. If someone wants their grown son or daughter to choose from a children’s menu or color, they will make that request.

Anyone who has eaten with him becomes aware quite quickly that Cliff is not a fan of forks or napkins either. Why bother with them when one’s fingers and shirts/pants work perfectly well for the purposes of eating and wiping? It seems the more we ask him to please use a fork, the more he puts down said fork when we’re not looking. Last weekend at lunch in Newport, I handed him a napkin and he promptly balled it up and threw it at Ken’s head. We probably shouldn’t have laughed, but it was hilarious at the time. At least it wasn’t a utensil.

But here is the true reward for bringing Cliff out to eat—it’s his sheer joy when it’s time for dessert. At the mere mention of lemon meringue pie, his joy is uncontained. When the pie then shows up, the reaction is not unlike telling someone they’ve just inherited a million dollars, a mansion and a yacht. What’s more, we have redeemed ourselves after annoying him with our insistence upon manners.

Just goes to show you, it’s Cliff’s world and we just live in it.

Gold

“Make new friends, but keep the old. One is silver and the other gold.” --Anonymous

I cried often when Cliff was a baby. I kept a stiff upper lip for my family, but in those moments when I sat alone in my apartment looking out a window or as I stood under the shower’s steady drumming, I cried because I felt sorry for myself. In the dark of the midnight hour, as I nursed him, I cried because I worried about how he would fare in this oftentimes cruel world. I cried because I felt more alone than I had ever felt, certain that I was the only mother of a baby with a diagnosis instead of just a baby.  

And then I met Leighann. We were both members of a support group that met once a week to talk about our babies, to just feel like normal parents. Leighann and I were total opposites—she outgoing and outspoken, and I, introverted and shy by comparison. The couples brought their babies, all of us gathering to admire each other’s children in the relative safety of a private meeting room at St. Agnes Hospital. Leighann and her husband began to socialize with us outside of the support group, and I always looked forward to our get-togethers because invariably Leighann would make me laugh like mad with her sometimes off-color comments and the way she artfully told a funny story. I could be with her without pretense.  I haven’t seen her for many years; I moved twice since then and we lost touch. When we found each other on Facebook, I couldn’t believe it. Now she makes me laugh without having to be in the same room.

Caroline writes to me once at year around the holidays.  Her Christmas card includes a letter with an entire year’s worth of stories about her family. I haven’t seen her in twenty-five years, but she writes as though we are the dearest of friends. I love how she ends her letters: “Fondly, Caroline”. In turn, I write to her in much the same way. The words she writes leave nothing out. The good, the bad and the ugly is all there, for there is no pretense between us either. I look forward to her letter, in fact, have come to depend on it, because there is a feeling of fellowship there; neither of us holds anything back. One of my favorite pictures in the world is the one of Cliff and her son Michael sitting on my ugly pink couch in my first apartment. A cone-shaped birthday hat sits on each brown-haired head. Neither one of them is exactly sitting up straight, owing to their low muscle tone, one effect of an extra copy of the number 21 chromosome. They wear matching one-year-old smiles and Caroline and I look so incredibly young, first-time parents who were related one to the other by happenstance.

When we moved from New York to Massachusetts fifteen years ago, my friend Diane and I did our best to keep in touch. We would take occasional trips to each other’s houses, but time and distance made it difficult to keep that up. I don’t know why we stopped calling each other. It’s terrible really, because Cliff and Diane’s daughter Jennifer were great friends. Conversations with her were always reminders that life is good and sometimes damn funny. Diane would eventually teach me so much about the ins and outs of dealing with school administrators who turned out to be giant assholes who probably shouldn’t have ever been put in charge of children, much less special needs children.  She would immerse herself in parents’rights and educational law, find the best people to assess Jennifer’s needs, and put it all together with her kick-ass personality! I credit her for helping to shape the parent I became and the advocate I continue to be for my son. Because of her friendship, I knew how to fight the constant fight for his rights. She informed my approach to life with Cliff: high expectations, no limitations.

How is it that I lost the treasured friendships of my 20’s and 30’s? How I wish I could turn back the clock, fix things. I miss them. After all this time, I have never quite formed the connections with other moms of children with DS that I had with them. I love the friends I have made here, and they are precious to me. But I believe there is a bond between and among those of us whose children are born with a challenge. I can pass a stranger on the street holding the hand of someone with DS and know her story. Our stories are the same. I know what it is like for them.

If there is a lesson to be learned from my experience, it is to give your friendships the attention they deserve. Even if it means a phone call while you’re doing a million other things. Even if it means getting in the car and driving three hours to where they live.

 If you take care of your friendships, you’ll always have someone to laugh with, a friend to listen to you cry, instead of sobbing in the lonely space of a shower stall.

Sturdy

                                                                           Sturdy

“If tomorrow morning the sky falls…/have clouds for breakfast. If night falls…/use stars for streetlights.”—If You’re Afraid of the Dark, Remember the Night Rainbow, Cooper Edens  1979

Descending from the top of the stairs, he pauses for a full two minutes, one shoeless foot stretched out straight in front of him, as if frozen in the middle of a kick-line dance.  “Come on down, Cliff. Breakfast is ready”. I watch from the landing as he gingerly puts his foot down, toe first, as though about to test the pool water.  Then, something happens that I haven’t seen him do before:  He turns himself around, Hokey Pokey style, in a complete circle before completing his descent. This seems vitally important to him, just like his habit of closing all the doors in the house and taking mail out of the mailbox one piece at a time.

News arrives via Cliff’s communication book about the scourge of the stomach virus traveling from one person to another at his dayhab program. It has me on edge. On Thursday, he isn’t quite himself. In the middle of the night, the familiar cough and roar coming from Cliff’s room has me running in to his room from a dead sleep, in time to grab a towel to catch the first of the night’s stomach contents. I am careful to not breathe, to spray the Lysol in the air between us and on every surface I believe he’s touched. I wash my hands at least a million times. But when I am that close to the front lines, it’s foolish to think there might be a different ending to the story and I resign myself to waiting for my own symptoms to start. Thirty six hours later, well…

One day when my boys were small, I took them to J.C. Penney’s portrait studio. There was someone ahead of us so we had to wait awhile. In the meantime, a dad with two children came in. When I glanced their way, it was hard to ignore the children staring at Cliff (We are used to this). After several minutes, one of the children asked me, “What’s wrong with him?” Dad pushed away the boy’s pointing finger, embarrassed, and admonished him. “That’s not polite!” I bent down to get closer to the boy’s face and gently said, “There’s nothing wrong with him. He looks a little different, that’s all.” To the dad I whisper, “Next time, it’s okay to answer his question. Otherwise he’ll learn to be afraid.”

To be completely honest, I’m not always nice when people stare. Sometimes I just stare right back. If I'm in a mood, it's a death ray. I will concede it's hard not to stare at a grown man laughing to himself in the grocery store aisles, or saying, "Halloo!" to no one in particular. Still...

These are some of the stories I thought about after I read an article about a woman who fought successfully for her child's right to ride a regular school bus and attend his neighborhood school. The school district was still in the dark ages, and opposed his inclusion. She adopted Churchill's motto--never, never, never give up--and she didn't. All these stories hold a common thread; they all are a part of the amalgam of events and realities of raising children with a difference.

There is a sturdiness to parents like us.  We do what all other parents do for and with their children; we just do it longer.  It’s like what some call “soldiering on”. We don’t even know we’re doing it until some well-meaning soul from the side of the street where the grass is supposedly greener, says how amazing we are. It’s funny, really, that someone might think I’m some amazing person when I am just me, Celia, who grew up in a modest town, in a modest home, with a modest intelligence and the kind of shy temperament that kept me on the outside looking in. I’ll tell you--you learn things when your kids turn out differently than you once daydreamed about. You learn that every day your child wakes up and is here, it’s time to bring that day up to the level he or she deserves; you’ve got to make the noise required to speak up when a child can’t; you must put your heart and soul into it. There isn’t another option. We owe our sturdiness to a steel will born on the same day our child was born or diagnosed or injured, the one that built up from that time on, instilled by God, whether you believe in Him or not.                                                                  

There’s no magic in it. It isn’t heroic. It’s simply putting one foot in front of the other.

 I like to think I do it with flair, a little like Cliff descending the stairs.