Parenting with a disability – PowerchairDiaries

More Than Enough

By Mark E. Smith

I’ve spent my whole life not being enough. Truly, from my birth, onward, I’ve never been enough. The doctors declared me a vegetable who should be institutionalized. My father was so ashamed of my disability that he refused to push me in my wheelchair in public. Mrs. Robinson, my third-grade public school teacher, fought to keep me of her classroom because I wasn’t physically on par with the other students. My prom date wouldn’t dance with me because I used a wheelchair. Waitresses have refused to serve me, and even in 2014, I still occasionally face discrimination because in the eyes of some strangers, I am not enough.

And, it remains the case, that in so many situations and perceptions, I am not enough. However, I want to share with you a very fitting story about what it’s like to face such a struggle, what it means to be labeled, to go through life as never being enough. See, when I was around 13, I desperately pursued my physical independence, knowing that in a world that didn’t view me as enough, I was in a race for survival, avoiding the potential of ending up in a long-term care facility because I couldn’t care for myself. And, so as part of enhancing my physical strength toward independent living skills, I began going out every day after school and pushed my manual wheelchair along the street in front of my house. I was severely spastic, with terrible coordination, and used a power chair, so pushing a manual wheelchair was a tremendous struggle. I fought to get both hands on the push rims, and gave a single thrust of the wheelchair, throwing my body into spasms – then, as the wheelchair coasted to a stop, I started the process all over again. It took me over an hour to go down the block and back.

However, it wasn’t physically pushing the manual wheelchair that was the biggest challenge. Rather, it was the literal voices along the block. A few neighborhood boys of my age taunted me every day, calling me retard, mocking me with spastic gestures, telling me I was not enough, that I couldn’t even push a wheelchair correctly.

Nevertheless, every day for that school year, I put myself in the line of ridicule and humiliation and pushed that wheelchair up and down the block, literally being told I wasn’t enough with each challenging push of the wheels. It was a set schedule: at 3:30 every day, I pushed my manual wheelchair, and the other kids followed along humiliating me. It was painful and scary and enraging and embarrassing, but I had to endure it for my greater good.

That one year taught me a lot about not being enough. In pushing that manual wheelchair, all the while being mocked, I didn’t merely improve my physical abilities, I developed perseverance, determination and autonomy. I wasn’t pushing to be enough to the other kids or the rest of those who discounted me. Rather, I was pushing my own race to become more than enough.

The fact is, I’ll never be enough. Heck, my own father went to his grave unquestionably ashamed of me, I had a ex-girlfriend give me a written list of why I wasn’t worthy of her love, and I still face public discrimination and humiliation from time to time. I will never meet certain standards or be enough as a person in the eyes of some.

So, then, how are many aspects of my life explained? If I was not enough to my parents, how did I go on to successful careers in the mobility industry, writing and speaking? If I was not enough to my third-grade teacher, how was I able to go on to college and grad school? If I have not been enough of a man in the view of some strangers, how have I succeeded in raising a beautiful daughter as a full-time single father? The list goes on and on, but the point is, despite my never being enough in the eyes of so many, how have I, to the contrary, had so many successes?

The answer is universal. We should never strive to be enough in the eyes of others – it’s a low bar to measure ourselves. Instead, we should ignore the false ceilings that others place upon us and instead push to our own best abilities. And, in that process an amazing transformation occurs: we eclipse never being enough by actually becoming more than enough.

Seemingly Insurmountable – Video

What Nancy Didn’t Know

By Mark E. Smith

My daughter, almost 17, ran into Nancy at the grocery store. Nancy is head of my daughter’s performing arts program each summer, a calm, cultured, collected woman in her 50s. However, as my daughter told me, Nancy was a bit odd that day at the grocery store, a bit disoriented, my daughter feeling as though Nancy didn’t recognize her, although they knew each other very well.

It was the day before Thanksgiving, so my daughter – although disconcerted by Nancy’s sudden distance – chalked it up as Nancy distracted by the holidays and outside of the usual setting where they knew each other, outside of auditions and auditoriums, the music of both their lives. And, I agreed.

Yet, Nancy knew something my daughter and I did not. Or, maybe, my daughter and I knew something Nancy did not. See, later that night, Nancy emailed my daughter, both apologizing and explaining. Nancy saw my daughter pushing a 5-year-old little girl who uses a wheelchair. She was singing and dangling a ribbon as my daughter pushed her down the aisles. But, in the email, Nancy went on, saying that she didn’t know my daughter’s connection to the little girl, but she knew what type of life the little girl must live in a wheelchair, and how difficult life will be when she grows up. Nancy had preconceived notions of what disability meant, ignorance and stereotypes locked into her mind somewhere astray from her wisdom and education, an out-of-place note in an otherwise harmonious symphonic composition.

However, my daughter and I knew something Nancy did not. What Nancy didn’t know was that there are no distinctions among children. Every child is perfect and beautiful and unique in his or her own way. As with no fall leaf being any less awe-inspiring than the next – regardless of its color, shape, or size – every child in a grocery store should bring a warm smile to your face as you pass by him or her in the aisle. Children are simply children, after all – perfect and beautiful and unique just like the leaves of fall.

Opening Our Closets

Soul is about authenticity. Soul is about finding the things in your life that are real and pure. -John Legend

By Mark E. Smith

With the holidays approaching, and special friends visiting my home for an extended stay, my daughter and I started making a list of what we needed to do in order to make our house as perfect as possible.

See, for my daughter and me, our home is about love, laughter, understanding, and tranquility, so we haven’t cared that we have a sheet hung across the family room window because Rosie the English bulldog attacked the custom blinds, nor have we cared that the dishwasher has been broken for years (it’s just the two of us, so we don’t need a dishwasher!). We’re blessed with a very nice home, that’s neat and clean, and we don’t sweat the small stuff. We’re happy as-is.

However, with company coming, the list got longer and longer of ways to spruce up our 12-year-old home, all to impress our house guests. And, then I realized how unauthentic I was being, how I was putting priority on a shell of a house instead of the depth of my character and heart. My daughter and I want to spend time with those close to us, and replacing blinds and a dishwasher has nothing to do with it. The quality of one’s character is far more important than the quality of one’s house.

How many of us live such a facade in many aspects of our lives, where we present an image instead of just being ourselves – namely, because we don’t think others will embrace us if they see who we truly are?

The answer is, most of us. However, here’s the issue: if we hide or disguise ourselves, others don’t truly know us, and it creates a barrier for letting other people in. We live with secrets, isolation and in the worst cases, shame. Any aspect that we falsely polish or hide from others is like placing a wall between us and others. If we want the truest connections, we must be open and authentic to an extraordinary degree. Here’s the real me – take it or leave it, but at least I’m authentic. Life isn’t Facebook, where everyone’s life is a happy two-dimensional facade on a screen. To be authentic is to be real in every sense.

And, I think all of us have been unauthentic at times, both with ourselves and others. The solution, though, to both resolving it and avoiding it is to be totally authentic. Yes, some will reject us in the process, but most will embrace us.

In my own life, I strive to only be authentic. However, it’s not always easy, and I haven’t always succeeded. I’ve struggled this year with a very weighty subject in my life: my daughter will be heading off to college in the blink of an eye. Those around me have asked whether I’m prepared for that emotionally, especially since it’s just been the two of us for years, our lives so intertwined?

I give a very enthusiastic answer, that my daughter’s worked extremely hard toward college, that I can’t wait for her to flourish on her own. After all, it will be another amazing stage to witness as a parent. Yet, if I’m to be authentic, it’s truly only telling others half of my feelings – I’m not being honest.

The fact is, my daughter has been my foremost focus since the day she was born. Then, in being a full-time single father, she’s the better half of our dynamic duo, always a life force in our home. Girlfriends have come and gone, but it’s always been Shorty and me. No, I don’t know how I’m going to handle having my little girl, housemate and, really, best friend no longer around on a daily basis. I can picture Rosie the English bulldog and me just staring at each other on a Wednesday night, saying, What do we do now? Even if I’m living with a woman, I don’t see the transition being any less heartfelt. Yes, the thought of my daughter going off to college is unquestionably what I want and will be among my proudest moments. But, it’s also painful, scary and sad.

However, as I’ve opened up with friends about my complete feelings about my daughter eventually heading off to college, they’ve been extremely supportive and full of wisdom. Again, if we are going to live with authenticity, we must share our whole self, as-is, honestly, and people do reciprocate on such a genuine basis. In this way, opening myself up to others is like having guests in my home: I’d rather choose the imperfection of openness and joy over the tidiness of isolation and despair.

Of course, authenticity is ultimately about accountability, and that can be a struggle in itself. A great tool in that area is to surround yourself with people who will out of love call you on your behavior when you’re not being authentic. Both my sister and my best friend have called me on my behavior over the years – and rightfully so, as I’ve done some freakin’ stupid stuff. I remember being on the West Coast, feeling a lot of sadness over the ending of a serious relationship, and rather than being authentic and telling my friends that I was in a lot of pain, I went the rock star route, numbing myself with everything I could find as the life of the party. And, to his credit, without his being judgmental, my best friend soon pulled me aside and said, “I suspect there’s a lot going on in your life and it’s getting to you in unhealthy ways. It’s not the Mark I know.”

And, he was right. I wasn’t being authentic. Rather, I was being an emotional coward and dishonest. Fortunately, I was able to get myself back on track – arguably with greater clarity – all thanks to a true friend who believed in me and wasn’t afraid to call me on my falling off of the authenticity wagon.

None of us are perfect or immune to real emotions that tempt us toward going astray. I’ve been there and I still go there. However, recognizing the power of living to a higher standard – authenticity – and working at it in even the most challenging situations makes living as who you are a lot more rewarding.

My house isn’t perfect and neither am I. I need new blinds and a dishwasher, and Lord knows I’ve got my emotional issues. But, my home and heart are open, as-is, so come on in.

Heavy Sky

Now I’m a grown man, with a child of my own, and I swear I’m not going to let her know all of the pain that I’ve known. -Art Alexakis

By Mark E. Smith

When I was 17, I spent a lot of that summer camping in Yosemite’s White Wolfe region. It was part independence building, part adventure, part escape. I attended forestry seminars that summer, and learned that wild fires can prove good for the environment. Dense forests fill up with debris, and stifle new growth; however, a wild fire clears out the old, and allows new plants and trees to grow. What initially seems like destruction, actually builds a new, stronger habitat.

At that time, I wasn’t in touch with my father. He’d walked out on my brother and me many years earlier. We were little, maybe five and six, or a bit older – it’s hard to date such things, probably because it’s too painful to remember exactly when your father left. But, I remember.

Regardless of dates or circumstances, when your father drives away for the last time, it creates a void in you that many say never goes away – it’s just a heavy sky that’s left over you. And, as the seasons pass, you learn that other people, who you love, leave and don’t come back, either. It’s emotional dominoes set into motion by the man who’s supposed to be a boy’s hero, and you learn to just fall with them, relationship after relationship, where the fear of abandonment becomes the security of being alone.

Yet, you grow strong in ways, where you never distrust because there’s always a chance that someone might stay. You’re forever a seven-year-old starring out of the living room window, with the possibility that Dad might pull up in his pick-up truck, boozed up but playful. And, so you learn to trust in a counter-intuitive way – it’s the dream that’s the only comfort to hold onto.

And, you likewise learn to never leave anyone because you don’t want her or him to know the pain that you’ve known. Yes, everyone’s going to promise to be by you till the end, but who dare live up to it? You will live up to it because you won’t be like him.

And, then there is her, your own child, and as a broken man, there’s something remarkably whole about you in that single role, where your pieces come back together, and you see everyone around you in the sunlight of spring. It’s inexplicable that where only destruction has been, beauty emerges – a single flower among ravaged woods. And, you realize that the injustice of not having a father is corrected by being a father – the better man, you are for it all.

Good Deed, Punished

By Mark E. Smith

My mother raised me with her unique philosophy toward charitable giving. “Do right simply because it’s the right thing to do,” she used to say. “But, never forget that no good deed goes unpunished….”

She told me that saying hundreds of times, and I remember questioning her on it once, where she explained that we should all do good, but expect to ultimately be punished for it. Way to scare the heck out of a 7-year-old regarding charity, Mom!

Fast forward to the recent, where I was at a muscular dystrophy fund-raising ball, bidding on an item. See, the way it works is that companies donate items, you bid on them, and the money goes toward MDA summer camp. My mode is to sincerely maximize my bidding by not bidding on something that I want, but by bidding on something that might make a difference in someone’s life close to me. The money goes toward the MDA, someone close to me gets a meaningful gift, and everyone wins.

…Except for some little kid, whose summer I ruined in the process this time around. Sorry, Kid – sometimes doing right simply because it’s the right thing to do gets you punished.

This all started with the best of intentions, my date and I, in formal attire, browsing the auction items, mixing and mingling. There, we found a red-and-silver electric ATV, looking like the most fun ever for a kid. My date’s son has been doing great in school and at home, and we both thought he’d love it – so that’s what I decided to bid on. Again, my winning bid would support a child going to MDA summer camp, my date’s son would get a much-deserved surprise, and all would be great.

Now, the way bidding works is that they give you what looks like an iPhone, and you enter the item number, your bid amount, and then it tracks the bidding for you throughout the ball. A green check mark means you’re the high bidder, and a yellow exclamation mark means you’ve been outbid, but then you can increase your bid.

So, I bid on the ATV, and within minutes, I see a yellow exclamation mark, and raise my bid, likely over the MSRP of the ATV because I kind of know what those types of riding toys cost. And, then, I’m outbid immediately, so I bid again. And, then, I’m outbid again!

I then hypothosize that beyond the good intentions of the money going to charity, someone is running up the bid just to tick me off – even though the whole process is anonymous. In fact, I’m then convinced that the couple running up the bid thinks that they have more money than me – which I’m pretty sure that the busboy had more money than me at that gig, so point deserved – and then I’m really ticked off (again, even though no one knows who’s bidding on what, and we’re all eating dinner as if it’s a judgement-free zone). And, so I keep bidding and getting outbid – and keep getting more ticked off.

I don’t know about you, but if the rules don’t work in my favor, I just change the rules, a marvelous way to live. So, I decided that it was no longer about who had more money, but whose kid deserved the ATV more. And, I knew that my kid deserved it far more – even though he’s not my kid. In fact, their kid is undoubtedly a spoiled, whiny, miserable little brat, who doesn’t deserve an awesome little electric ATV. Seriously, you know how upset you’ve been when you’ve found your curbside garbage cans knocked over? Their kid did it, and he hit your car with a shopping cart on purpose, too, in the grocery store parking lot. The last thing that a rotten kid deserves is a red-and-silver ATV!

You’re probably thinking, Mark, is it truly fair of you to judge a child, let alone one who may not truly exist? Absolutely! This is the same kid who picks his nose, and wipes it on his little sister’s shirt. He’s rotten, I tell you!

So, I just kept bidding. It was admittedly no longer about the MDA in the moment, but that my kid was better than their kid (again, even though he’s not my kid). It became about principle to me. Money was no longer an object – their kid, based on his own poor behavior, wasn’t getting that ATV, period. If he was lucky, he’d do what we all did as kids during the summer, and be glad to ride a piece of plywood with roller-skate wheels bolted to it. If it took $1 million – which would never happen, but let’s say it could – I was going to spend whatever it took to prevent that kid (who, by the way, spits his chewing gum on the sidewalk!), from getting that ATV. If you want to be an ill-behaved child, fine. But, your parents aren’t buying you an ATV under my watch, Buster!

And, then, BAM!, bidding ended – and I won the ATV, for an illogical sum of money. But, let us not forget, it wasn’t about money, but principle, where a child with muscular dystrophy could go to camp, my date’s son got a much-deserved surprise, and a rotten little kid wouldn’t get rewarded for his terrible behavior. That’s a charitable trifecta in my book!

As the ATV was loaded into my van at the end of the night, I realized that my mom’s asinine philosophy toward charitable giving finally proved true. I did the right thing, and a little kid got punished for it. Karma hurts, Kid – suck it up, with no ATV for you!

Just Jump!

By Mark E. Smith

OK, I know what you’re thinking: Mark’s back in Vegas again? Publicly, I guess it does seem like I’m in Vegas a lot, but really it’s only a few weekends per year. …OK, so, yes, I’m in Vegas again – but I love this place! And, this time is different, namely because I’m with my girlfriend and our two daughters – sort of like the Brady Bunch, minus four kids, Alice, Sam the Butcher, and Cousin Oliver. But, really, we’re in Vegas for a three-day weekend on a much more serious note: Personal growth as individuals and as a group.

Our daughters are moving toward 14 and 16, mine being the older. It’s a pivotal time in their lives, where we want them to be empowered, to know their amazing potentials as strong, poised, confident young ladies. In this messed-up culture that sends airbrushed, cosmetically-enhanced messages that no woman is ever good enough, we say, nonsense – every woman is more than enough, perfect as-is, capable of whatever she dreams. And, this is why we’re in Vegas, encouraging our daughters to step of the 108th floor of the Stratosphere, plummeting 855 feet to the ground.

…Well, maybe I should clarify the jumping off of the building part. See, the Stratosphere, on the outreach of the Vegas strip, is a replica of Seattle’s Space Needle. The only real difference is that if you jump off the Space Needle, you die; whereas, with the Stratosphere, you’re perched on a ledge, wearing a harness, and as you leap, control cables guide you safely to the ground, slowing you to your feet at the end. Yet, despite the safety factors, stepping off of that ledge on the 108th floor, 855 feet off of the ground, and virtually free falling, takes a huge amount of courage and confidence. And, I explain this to our girls at dinner the night before:

At points in our lives, we each find ourselves perched on a ledge. If we have the courage to jump – maybe it’s a career step, or starting or ending a relationship, or any aspect of life that requires us to stretch our comfort zone – we grow. However, if we don’t have the courage to make those leaps, our lives stagnate, we go nowhere. Both of you girls are doing an amazing job in school, with huge life potential ahead of you. But, you’ll need to take leaps of courage along the way to do it. Let the literal Stratosphere SkyJump be a lesson in life, where you’ll carry it with you, knowing that you have the courage and strength to take big leaps in life whenever needed….

After the jump, I tell the girls how proud of them I am, and they share how the scariest part was preparing for the jump, that once they summoned the courage to step off of the ledge, the liberation of flying through the air was amazing.

Really, for all us, no matter our backgrounds or challenges, there’s a lesson to be learned here, isn’t there? Success in all areas of life is all but guaranteed, as long as we have the courage to take initial leaps out of our comfort zones. A lot of times challenges are easy, but stepping off of the ledge, into a seemingly new territory is the hard part. Yet, when we summon the courage to simply step off of the ledge, our lives always move to the next level. As I told the girls, just jump!

Listening, Loving – Present

By Mark E. Smith

It can be argued that there’s no song more emblematic of the late 1960’s counter culture of flower-power, psychedelic drugs, and free love than “Purple Haze” by Jimi Hendrix.

However, contrary to the logical presumption that Purple Haze is about drug use, the late Hendrix swore it is a love song, a lament about a girl. And, he pointed to the lyrics, Whatever it is, that girl put a spell on me.

Of course, the lyrics that most of us know from Purple Haze are, Excuse me while I kiss the sky. But, what really puts it all into context is the preceding verse, Actin’ funny, but I don’t know why? And, so you have an amazing, iconic song about a love-sick guy, not knowing how to get himself out of a bad place, questioning, Is it tomorrow or just the end of time?

Fast forward 40-something years, and in today’s culture, the love-sick soul in Hendrix’ masterpiece becomes seen in a vastly different context, pathologized – that is, someone who needs help, some sort of intervention. Hendrix’ lyrics could easily be, Excuse me while I fix this guy.

See, we now live in a culture where it’s not OK to sometimes not be OK – and sometimes we’re just not OK, and it’s OK! Truly, we live in a society where everyone wants to fix everyone – if you have a problem, there’s no shortage of friends, family, TV personalities, doctors, and prescription drugs ready to fix you. And, yes, sometimes we need help – clinical mental health issues and various dependencies require medical intervention.

Yet, a lot of times, when we’re seemingly not OK, it’s OK. In my roles, I hear from a lot of families who want to help their loved ones who have disabilities. And, what I’ve come to understand is that a lot of times, the best help is no help – simply listen, love, and be “present” – and let the person work through his or her emotions and problems in his or her own time and way. For the most part (again, with the exception of clinical issues), we have an innate way of finding our way through the proverbial dark spots in life, back to the sunlight, where all we really need is time, space, and someone to just listen and be present with us during trying times, without judging or preaching. As Wayne Dyer puts it, “Love is the ability and willingness to allow those that you care for to be what they choose for themselves without any insistence that they satisfy you.”

As a full-time single dad raising a teen daughter, I’ve been practicing what I’ve coined the “listen-love-present approach” – and it’s challenging! I mean, I have all kinds of advice just waiting to be blurted out, but that’s not what my daughter – or most people! – need or want. Rather, what my daughter needs and wants is for me to listen, love, and be present – not dish-out advice. Sure, there are places and times for advice – including with my daughter – but, there are far more moments where the listen-love-present approach is the most sincerest form of support that we can give others.

I have an oversized, over-stuffed chair with pillows in my master bedroom. And, some evenings, my daughter will come in when I’m in bed watching TV, and she’ll curl up in that chair, and start talking. Recently, in that comfy chair, she shared with me that she’d just been dumped by her date for the Semi-Formal school dance – that is, it wasn’t just her first real school dance and “date,” but her first time being dumped. As a father, I could have given her tons of immediate advice and opinions: You’re beautiful, and he’s an idiot. I’m sure you’ll have new date in no time. We all get dumped. You won’t remember his name in 10 years. Look at how many times I’ve been dumped, and I’m fine. Everyone gets dumped – it’s just part of life. But, I didn’t tell her any of it because it would have no effect. If I did, it would really be a dismissal, wouldn’t it? Yeah, yeah – you’re 15. Trust me, you’ll get over it! That’s no way to treat anyone in real pain, who, as Hendrix noted, is questioning in a way, Is it tomorrow or just the end of time?

Rather, I asked her some listen-love-present questions: How’s this situation make you feel? …What do you think about the guy who bailed on you? …What are you going to do about the dance? And, she found the answers within herself, not just that evening, but in the coming days. (And, she gave me permission to share this story with you, as I would never betray her confidence.)

The fact is, as her father, my role is to facilitate her growth, not dictate it – and, as a father, there’s nothing more rewarding than seeing your child overcome life’s hurdles in healthy ways on his or her own, where he or she needs love, not fixing. However, this really applies to all our relationships, where often the best way to support someone isn’t with advice, but just loving, listening, and being present.

See, the truest lessons are often learned not through advice or preaching from others, but by thinking and feeling on our own – with someone who’s listening, loving, and present along the way, when we’re fortunate. As for my daughter, of course another boy asked her to the dance. And, as one might presume from Purple Haze, being broken hearted – for any number of reasons in life! – certainly shouldn’t be equated with being broken. We all need someone to listen to us from time to time, but rarely do we need fixing.

Words for Robert

By Mark E. Smith

Words.

People too often underestimate the power of words – the absurd, the reverbs. Words really can define the direction of one’s life, changing it from dark to light, from day to night, from blind to sight.

Words.

A few words can inspire, liberate, desire to be one’s best. However, to the contrary, words can also defeat, destroy, debilitate, make one’s life a mess. I mean, what we’re told by others, we often believe – heart on a sleeve – sometimes we’re left to flourish, sometimes we’re left to bleed. And, it’s for these reasons why we must choose every word carefully, deliberately, thoughtfully, where our words positively impact, not negatively detract.

Words.

I recently read a charitable letter – words striving for the better – about someone we’ll call “Robert,” and it sang a tune straight to the heart, that wasn’t an end, but a kick-start:

Though the doctors said there was little chance that he would walk again, our family refused to accept this devastating prognosis. We began doing research, determined to move Heaven and Earth to make Robert whole again.

Words.

In those two sentences are words that made me realize something that I’d never had the courage to admit to myself before: I’m not a whole person, just a partial equip. See, the fact that I’ve never walked makes me incomplete, a lesser person, someone not whole, my existence a burden. And, after fully realizing those few words in that eloquent, poignant charity letter, I understood how worthless I am, how meaningless of life I live – I am useless, a never-do-better. And, it’s devastating to my core, a struggle to live with myself like this – a fragment of a man, deserving dismiss. I mean, can you imagine the pain that my daughter has endured, being raised by me, an incomplete father, a lesser person, someone not whole, to be abhorred? How could I let my disability do this to her? And, how much suffering have I caused my family, friends, colleagues, and community? And, as for the women in my life who have come and gone, who can blame them – they deserve better than half of a man, me.

As one who cannot walk, who’s not whole – whose incompleteness has let everyone down – I have one thing to say from the depths of my heart, to write down: I am sorry for who I am, I regret who I am, and forgive me, Father, for what I’m not, not living to what life expects. Words can never express all of my regrets.

Words.

And, yet, those words, you see, aren’t me – I am whole, complete, and worthy, regardless of disability. However, here’s the question that truly terrifies me: If Robert is hearing such words from his family – Unless you walk, you’re not whole, you are not worthy – does he believe them?

Changing Like the Rising Sun

By Mark E. Smith

My daughter looks so cozy, curled up, under the covers on the sofa bed this morning as the sun rises over the Vegas strip, the full-wall of window glass framing her. She hated the thought of the sofa bed at first, preferring her own bedroom, but now she loves it – it is a tiny Vegas high-rise condo that she agreed after all is perfect for us, just the two of us, the way it’s been for some time. This is a week-long getaway, where I can visit my company’s western manufacturing facility and give a talk at the University of Nevada (UNLV), all while my daughter and I pursue some writing and photography in a town that’s a never-ending flow of story lines and imagery – and a sofa bed turns out to be just fine by her as a place to dream.

Glancing at my own bed, I wonder if I should make it or leave it for Housekeeping to change, but I can’t remember if it’s laundry day? I’ll wait till my daughter awakes, and discuss it with her – she knows the condo’s schedule better than I do, as she pays attention to such details. For now, I’ll sit quietly, watching the Vegas sun rise over my daughter, waiting for her to awake with a smile and a stretch, as she always does, and we’ll talk about whether to cook breakfast or walk to Starbucks or Denny’s, and she’ll tell me whether it’s laundry day.

After this quick trip to the Vegas condo, we’ll be back in Pennsylvania, on our usual schedules, celebrating our birthday that’s only three weeks away. Hers is March 3, and mine is March 2, so beyond the separation of midnight, it’s kind of a shared date, so we just call it our birthday. She’s turning 15, me, 41.

I always said that the joy of parenting is in seeing your child evolve and grow, where there’s no ideal stage, but that the entire process is awe-inspiring. However, as I sit here, I realize that I just want to stop time after all. She’s perfect the way she is – ideals, flaws, no matter – she is perfect, and I just want time to stop, freeze this moment forever, much as she does with her photography.

In three years, she’ll be off to college, and our relationship will evolve in yet more ways. Of course, I want her to move out, attend an ivy-league school, maybe in the northeast, maybe out west, but far from me – she needs to fly on her own, to soar on her own. And, I, too, will be on my own – an empty-nester at such a seemingly young age, likely lost for a while. Maybe I’ll have a live-in girlfriend, or it’ll just be me and the dogs. But, no matter what, I’ll still be lost for a while – and it will be OK. It will all be OK.

And, as I sit here watching my daughter sleep, I can’t help but already miss having her as the everyday center of my life. I was the first to hold her when she was born. As a toddler, she spent more time on my lap than walking. We moved across the country together, sitting side-by-side on the airplane when she was three. I still take her to school each morning. My weeknights and weekends are filled with her band and drama rehearsals. And, the big comfy chair that she sits in while talking to me at night in my master bedroom remains her safe place to let it all out when needed. Yet, as I sit here watching her sleep as the sun rises over Vegas, I know it’s all changing – it’s ever-changing, her, me, life, all changing like the rising sun.

I really should wake her up to talk about breakfast, laundry, and our day’s events. But, I can’t. For a moment, at least, I can just sit here, admire her perfection, and watch the sun rise. Indeed, time can stand still – if only for a precious moment.