The Power of Self-Acceptance Begins with You #loveurself

 

Disclosure: I was given a #loveurself T-shirt for participating in this campaign. I will not be compensated for publishing this post. All ideas and opinions are my own. 

 

There are moments when I’m looking at myself in the mirror and I don’t like what I see. In fact, I hate it. So much that I need to look away. It’s agonizing. 

What’s very difficult for me to remember during moments like these– is that I’m not alone. 

I’m pretty certain everyone has had moments like these, whether we choose to admit it or not.

What I also neglect to recall is that I am so much more than what is being reflected in the mirror. I am a person, a young woman, filled with potential, drive, passion, conviction, intelligence, humor, wit, compassion– and hope. 

 

Loveurselfpic

What do you see when you look at yourself in the mirror? Do you see any of those qualities? 

 When I was invited to participate in a fashion show at BlogHer 2010, I was forced to confront these questions myself. I confess, it provoked some tears when I thought of how often I was loathing my appearance.

I had written about this issue some time earlier here, about a subject that is still very painful for me to talk about.

Indeed, I find it very ironic whenever I receive compliments about my looks, because, while there are often times when I am admiring my appearance, a lot of my insecurities stem from this very same aspect.

I mean, where the hell was this pep talk when I was having a b*tch fit at Ross while trying on shoes that I knew I couldn’t walk in?

Yeah. That. 

This is why I felt compelled to join the #loveurself campaign. One of my deepest desires in sharing my personal stories is to encourage others to stop giving others power over their psyches. I know full well just how much headspace I’ve rented, free of charge, to these immature people who probably have a hard time facing themselves. 

As an adult, I feel I’ve been able to let go of at least some of this self-imposed, self-hatred. I’m not in high school anymore, and I don’t feel the everyday social pressures of having to face my peers everyday.

Instead, now I get to socialize– both online and off– with a wide variety of friends of different ages, genders, and stages in life. Many are parents or even grandparents, and have a lot of sage advice and encouragement to offer me.

I feel that it makes a huge difference to be surrounded by people who have achieved a level of maturity that sadly, many of your high school peers never will. That’s a hard lesson I’ve had to learn, especially when I always felt compelled to believe my peers. It’s one thing to know that someone is wrong– it’s an entirely different thing to actually believe it.

The truth is, I think I’ll always have a struggle whenever I look at myself in the mirror. It’s nearly impossible to erase all of the scars of years of teasing, bullying, and emotional abuse from mean-spirited classmates.

But my hope is that, in writing about this topic, and in publishing it, I’m taking that power back. 

I’m so done with giving others power over my self-image, because it’s supposed to be a personal thing, and a positive thing.

The journey towards healing is rocky and tumultuous. Nevertheless, it must start somewhere. 

And this looks like a pretty good place to start.

 

Love,

Laurita ♥

The Sad Truth About ‘Selfies’ #NaturalDay

Disclosure: This post is not sponsored. I will not receive any compensation for writing/publishing this post. I am writing it of my own free will. All ideas and opinions are my own.

 

I’ve had a lot to say lately on the societal front. And I mean, a LOT. It’s no secret that I’ve always had my major gripes with society, and who can blame me? As a young, naïve, kindergarten kid, it was society that informed me that I was different, and not in a way that would be deemed “acceptable.”

It was children in our society that bullied, taunted, and tormented me, and it was parents of those children in our society that stood by idly, shrugging their shoulders, and letting it happen, while my parents made desperate phone call after phone call to plead on my behalf that they talk to their cruel kids. 

But maybe– just maybe, this wasn’t entirely their fault. Because other parents maybe stood idly by while this happened to them as they were growing up. They learned that some kids are just “born different,” and it’s okay to stand by while they get helplessly picked on because of something in their physical appearance. 

I’ve made some incredible friends in the past four years of being a blogger and online activist. Last night, while flipping channels absentmindedly, I grew bored and decided to join the #NaturalDay Twitter party, hosted by my awesome friend, Nadia Jones, of Justice Jonesie and the Niche Parent Network.

The party’s guest of honor was Sanah Jivani, a girl with an unbelievably remarkable story that I’m ashamed to say I’d never heard of until yesterday.

Sanah was diagnosed as a little girl with a rare disorder that caused her to lose her hair gradually. By the time she was in middle school, which is such a critical time in the human development process, she had lost it all.

The target of teasing and bullying, she decided to take a bold step– she took to YouTube and filmed a short video of her removing her wig.

It went viral. She received many supportive and encouraging messages, and she had found her calling. 

Sanah launched a project called “Natural Day” for today, February 13th. The purpose is to get everyone to go without makeup, wigs, or embellishments for one day. The request is simple, but it sends a strong resounding message about who we’ve become as a society. 

We are all smoke and mirrors. On instagram, we are all about filters. 

It’s sad to realize that, in an age so obsessed with “the selfie,” most of these self-portraits are actually staged– with lots of makeup, perfect lighting, and carefully-coiffed hair. Rarely is there any actual spontaneity in these images. And, as a result, rarely is there ever any truth. 

Watching Sanah’s brutally honest video, I can’t help but wonder what my friend Carly Findlay, an Australian blogger and badass appearance activist, would have to say about this topic. She has spent her entire life living with a condition that she can’t hide from.

In a way that might not be obvious to most, I’ve done something very similar with my body– I’ve tried to hide it. I’m reflecting on a post I wrote in 2011, Standing on My Own Two Feet, which I found excruciatingly difficult to write. 

I remember sitting at my laptop, eyes wide and wary, hands cold and clammy, as I hit “publish.” I remember refreshing my Facebook page what seemed like a million times as supportive comments pouring in.

I remember my eyes welling up with tears as I realized that people love me and accept me for who I am.

I remember feeling vindicated. 

So, for Sanah and so many others, here’s my own selfie. No makeup, hair slightly “done” but nonetheless in disarray. No smoke or mirrors– just me. 

 

 

NaturalDay

 

 

Who knows? If Sanah can do this– reveal her true self, little by little, maybe I can, too. 

 

I never go out without makeup on my face, so for me, let’s just say this is a good first step in the right direction.

Be sure to post your own selfies and videos without makeup and with natural hair today, using the hashtag #NaturalDay! And follow my girl Sanah on Twitter @SanahJivani.

We may be a society that is saturated with images of New York Fashion Week models that are rail-thin and wear excessive makeup and high heels, but we’re all human and we can grow. (To that end, did you see this awesome article in HuffPo about the first woman with a ‘physical disability’ to strut the NYFW runway? Check it out!)

Yes, these are all baby steps, and it’ll take a heck of a lot more than just a selfie or two to change long-held standards of “beauty.” But that’s what’s so fabulous about the internet.

It only has to start with one. 

 

For more of my thoughts on beauty and self-worth, please read “The Woman in the Mirror,” my post on the BlogHer ’12 Fashion Show, which I participated in as a model, as well as “Standing on my Own Two Feet,” which was chosen for BlogHer’s Voices of the Year in 2012. 

 

Love,

Laurita ♥

 

 

Goodwill Exposé Shows Good Intentions, Bad Reporting: An Open Letter to NBC


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Yesterday, while finishing up my breakfast, my good friend Spencer Day messaged me, and tipped me off on a news story I hadn’t yet heard of.

It had to do with people with disabilities, so he guessed– correctly– that it would press my red-hot button. Not that he was looking to provoke me, mind you. I’m glad he shared it with me. It needs to be discussed.

 

On June 21, a story aired on NBC’s “Rock Center with Brian Williams” that left me agape. The in-depth report detailed how Goodwill Industries, a very well-known charitable organization known for giving “equal opportunities,” is exploiting its employees with disabilities by paying them far below the minimum wage and forcing them to prove their skills using humiliating tactics– i.e., timing an employee while he or she folds as many pieces of clothing as they can.

 

The report claimed that the employees’ compensation is positively correlated with the workers’ abilities.

 

That’s not even the whole story. 
 
You see, this report by the ever-charming Brian Williams was peppered extensively with negative rhetoric as it relates to people with disabilities (person-first language? Not here!).
And, it gets worse. The entire report focused on how “the disabled” are being used– and how Goodwill is taking advantage of “our most vulnerable” people.

 

*Sigh, puts down coffee mug* Where do I even begin? Pardon me, but I didn’t realize that those of us with disabilities belonged to society like some pet. We are not always “vulnerable,” and what’s more– we are not yours, mind you.

 

Brian Williams interviewed a well-spoken, poised older couple, both legally blind. She quit working at Goodwill after four years of putting up with the demeaning wages, while her husband still works there. It was devastating for me to realize that, while what they are doing is plain wrong, for many of these hard-working citizens, it satisfies the need for honest worka need that has left the employment shelves all but empty in a still-ailing economy, and a need which is notoriously difficult for people with disabilities to fulfill. It reminded me of the catch-22 that many immigrants to this country are placed in– the need for honest work versus the reluctance to be paid in peanuts. Sometimes, minorities can’t make that choice.

 

Of course, this doesn’t exactly make me want to rush off to my room and collect clothes for donation after watching this story.
But, here’s the bottom line:
 
If Goodwill’s disgusting behavior towards its employees with disabilities did anything to perpetuate already-prevalent negative stereotypes about people with disabilities, then NBC and Brian Williams pretty much finished the job by trashing us all the way into next year. 
 
Many of my readers probably think I’m being oversensitive, that this is only about the lack of person-first language in this news story. It isn’t. It’s about abusing the pity angle to sell the story of a group that is already beyond marginalized because we are pitied. 
 
Now do you see the hypocrisy of this situation? If the problem is that Goodwill sees people with disabilities as less-than-human, and ergo, cheap labor, then NBC did little to help our image by calling us “vulnerable.” In doing so, NBC is (unwittingly, mind you) giving Goodwill the power to continue treating its employees as sub-human. 
 
This news story would not be almost laughably infuriating if its very premise had not been to expose a perceived “wrong” reality in society– that people with disabilities are far too often taken advantage of. That may be true, in fact, very sadly, it is. 

 

In merely telling the story, NBC is trying to prove that they are better than Goodwill– the perceived villains for all of America who tuned in that evening to watch that report. And maybe they did do this story for conscientious reasons– I’ll give them that.

 

But in their storytelling, NBC and Brian Williams proved that they are no better than our societal oppressors– that they are just as ignorant of our real struggle in this world– the fight to be seen as equal, as human. 
 
Maybe NBC won’t read this blog post. Maybe they will. If they at least responded somehow, then, just maybe, they’d be showing a little more compassion than the two-faced charity they exposed.

 

Maybe even a little goodwill. 
 
 

“Your Determination Inspires Me” and Other Killer Statements

Recently, I’ve seen a lot of feedback from fellow advocates and activists in the disability community regarding what is now termed as “inspiration porn.” I figure it’s long been the giant, pink elephant in the room, so it’s high time I addressed it as well, at the risk of sounding redundant. Whenever an issue like this becomes too prevalent, I feel the need to add my voice to the shouting crowd.

Most of you know by now (I’d be very disappointed if you didn’t!) that I despise the term “disabled.” I believe it to be an ugly term that is unfortunately used to liken human beings to damaged, defective machinery.

Take a moment to read that again. The term “disabled” equates people whom it describes to damaged, defective machinery. 

Think about each time you board a plane and are subjected to all the safety instructions. What is one of the key regulations they always tell you?

“Please refrain from tampering or disabling the smoke detectors.” 

I rest my case.

So, what exactly does this all have to do with the so-termed “inspiration porn” frenzy? Everything. You see, inspiration porn is the use of photos of people with disabilities coupled with phrases like “never give up” or “no excuses.” 

What the hell does not giving up have to do with living with a disability? You have no idea how many times I’ve given up or wanted to give up something, for reasons not having absolutely anything to do with my having spina bifida. 

So, please, before you think of this as just another bitter diatribe filled with cynicism, allow me to break down for you why I have such a huge problem with inspiration porn: 

 

  • It assumes that everything people with disabilities do is supposed to be “inspiring.”

Do you know what it’s like to live up to that kind of pressure? I mean, that mentality is dangerous to the mental health of those of us with disabilities, because it implies that if, on any given day, we choose to give up– drop that class, end that relationship, gain those 10 pounds while on summer vacation– we failed. That’s right. Your paltry attempts at gleaming inspiration from us make it all the more challenging for us to live our lives– as normally as possible.

The harsh reality is that we all, at one point or another, give up. But, that’s okay. No, I’m not being defeatist here. I’m simply pointing out that we all fall and pick ourselves up, and that’s normal. So, why hold a select group of us to a very unrealistic standard of accomplishment when you simply can’t seem to get your own act together? Focus on yourself, and stop comparing yourself to others. Wasn’t that your mama’s advice to you in the first place? 

 

A meme I created a few months ago to portray the absurdity of the mainstream media-- and the general public-- in assuming our lives are "worse" than the lives of others. Feel free to share or re-pin!

A meme I created a few months ago to portray the absurdity of the mainstream media– and the general public– in assuming our lives are “worse” than the lives of others. Feel free to share or re-pin!

  • It also sets the bar very low for people with disabilities. 

 

Yeah, you read that right. Unless we’re playing wheelchair limbo, there’s no need to lower your standards for people with disabilities. That’s insulting.

When I was preparing to graduate with my Associate’s Degree, I was so thrilled after participating in the graduation ceremony rehearsal. After all, I was taking the next step in my academic career. I’ll never forget the douse of cold water I received, from a college administrator no less, when she congratulated me– because I was able to walk across the stage. Of course, I’m sure she didn’t realize that I’ve been able to walk since I was two. I don’t think about it anymore. 

My offense to her condescending remark was two-fold: First, it implies that there is “something wrong” with not being able to walk. So, I took offense on behalf of all of my friends who aren’t able to walk. Does it make their lives any less fulfilling? I think not.

Second, and most important to me, I was celebrating what was, to me, a great accomplishment– I was halfway done with my undergraduate education, and all she could focus on was the fact that I walked across the stage. Well, thanks, lady! If I had known the bar was set so low for me, I wouldn’t have bothered with two and a half painstaking years of hard work and sixty-plus credits. I needn’t have tried so hard if all it would have taken to  consider myself a “success” was take five or six steps across a stage. 😉

Think carefully about the remarks you make, or hear others make, to people with disabilities. “I’m so proud of you for going to college.” “You got a job? That’s incredible! I didn’t know people like you could work.” “I can’t believe you danced the entire night.” “Wow, you downed that mojito in record time, even with spina bifida!”

Yep, I sure did. And I enjoyed every last sip. Make one more comment like that, and you’ll force me to have another. It’s on you. 

 

  • It overlooks the fact that you can be inspired by people without disabilities. 

Sure, you think it’s wonderful that I can push my wheelchair all by myself, but did you ever stop and admire the single woman who is struggling to raise three kids while working full-time? Maybe even while in poor health?

Oh, that’s right. Her “issues” aren’t as obvious as mine. It’s completely disingenuous to assume that my accomplishments are somehow more kick-ass than the achievements of someone else, just because my so-perceived “obstacles” may be a little more noticeable. In fact, I’ll come right out and say it– it’s downright hypocritical. Granted, I realize I’ve dealt with more than my fair share of adult issues, even during the first ten years of my life. But that’s not my entire life, and I’m sure that if you instead focused your attention on the accomplishments of real heroes– the young woman who has been working at her family’s non-profit since she was a teenager; the young man who just made a documentary about homelessness; the young woman who took on her school board so her child with autism could enjoy quality education– you’d realize that your emotional energy is far better spent on genuine admiration rather than condescension.

 

  • It ignores the fact that it’s okay to not get a gold star each time we accomplish a simple task, like making our beds or getting an assignment in on time. 

That being said, like anyone else, we’re human. We love being congratulated for the same milestones that others like to have recognized, too: graduations, birthdays, weddings, having a baby, getting a job or promotion, or receiving an award. We just don’t want– or need to have The Disability Angle thrown in our faces every single time.

I’m genuinely happy whenever I do something that inspires someone for a legitimate reason. I love inspiring people to live up to their potential. I just don’t wish for people to think that somehow, my potential is less than theirs. That would be a costly mistake. 😉

And if any of you ever have any questions or concerns about what is usually considered “acceptable” by a person with a disability, I’d be happy to chat about it. You know where to find me– I’ll be sipping my mojito like a champ.

 

♥ Laurita

Cover Girl: Emily’s Modeling Debut A First for Parents Magazine

When I first began to write on Holdin’ Out for a Hero, and E-mails and friend requests from parents of children with spina bifida started coming in, Elizabeth Keicher was among the first mamas to befriend me. This was almost three years ago, I think, and I remember thinking what an adorable little girl she has. “Gosh, I hope I get to meet them someday.”

Although that day hasn’t happened yet for me, an equally momentous occasion has taken place for Elizabeth and her precious daughter, Emily, who is three years old. This month, Emily’s beautiful face was featured on the cover of Parents Magazine, and an interview with Elizabeth was promoted on their digital version.

 

The tiny model proudly holds up a copy of the February issue of Parents  magazine– with her gorgeous picture on the cover. 

 

Of course, I couldn’t wait to profile Emily and Elizabeth on Holdin’ Out for a Hero, so Elizabeth was willing to answer some questions for me. Read on to find out why Emily’s debut is such a big deal for the spina bifida community– but why it shouldn’t be a big deal in the long run.

 

How did you initially find out Emily had SB?

My husband Chris and I were first-time parents, and had been trying to conceive for over a year.  We were thrilled to finally be expecting, and [went to] our 18-week routine exam with a sonogram for the baby’s physical.  About an hour into the exam, the technician stopped and told us we needed to speak with our OB.  We were moved to a regular exam room, and our OB came in with her laptop and said the technician spotted what might be a hole in the baby’s spine, and that in some pictures it was visible but in others, it was not.

Then she said, ‘”It could be spina bifida.”

I went numb at the prospect of any medical complication with the baby.  I looked over at Chris, who was listening intently to the doctor.  They immediately sent us to a perinatologist; we were rushed out of the room, given directions to a specialist five minutes away, and somehow composed ourselves and went to the next appointment.

 

Not even four years old, Emily has defied the doctors who once told her parents she’d never walk. 

 

How was SB explained to you? Had you heard of it before?

At the perinatalogist, they did a higher-level ultrasound, and walked us through everything real-time as we watched the screen.  Words like lumbosacral myelomeningocele, hydrocephalus, Arnold Chiari malformation, moderate severe hindbrain herniation, swirled around.  She pointed to the film on the computer and noted the shape of our baby’s head, referring to it as the “lemon sign” as a result of hydrocephalus; she pointed to the cerebellum and explained it had the shape of a banana, a downward displacement blocking the brain stem, noting the tethered spinal cord was yanking the cerebellum down, thus restricting the flow of cerebrospinal fluid.

I told her I had no idea, no idea what anything she was saying meant.  What did it mean for our baby?  What were we talking about?  Would the baby be okay? We were told there were no clear answers, [that] we wouldn’t know the extent until after birth, and possibly not even then, but much later in the baby’s life.  We should expect paralysis, an inability to walk.  No control over bladder and bowel function.  The necessity of a shunt, and a lifetime of shunt complications, infections, clogging, failures – each followed by surgery.  Varying degrees of intelligence challenges, from learning disabilities to severe compromised intelligence, all complicated by each shunt revision and complication.  A lifetime of surgeries, each coming with compounded health problems and deteriorating quality of life.

At 9:00 AM on January 13, 2009, I walked into my sonogram appointment expecting to make a DVD of our baby, which we would hand out as announcements (only close family knew we were expecting).  By 1:00 that afternoon, I was lying on the table in a doctor’s office I had never met prior to that day, listening to medical terms and images I was scared and confused by, and they were asking my husband and me if we still wanted our baby.

In her interview with Parents,  Elizabeth says “These kids are just like everyone else. You’re going to love that baby unconditionally.”

 

What info/resources were you given?

When you are pregnant and told you child has a medical condition, everything stops.  As a parent, you want to secure everything for your child – so this uncertainty of how your child will be impacted by Spina Bifida is wrenching.  Pregnancy was the hardest part for me, the waiting and the months of worry about her.  I think what makes the diagnosis so difficult for the medical community is [that] they cannot tell you what SB is going to look like for your child.  Someone with L4 may walk with no assistance; someone else may use a walker and braces; someone else might use a wheelchair.  A lesion level tells you nothing in utero.  Doctors can’t tell you if they will need a shunt, what the bladder and bowel challenges might be, what therapies will be needed, or how your child will progress.  So what they should say is: your child’s future can range from this to this, but it is certainly manageable and will become your normal.  You are still having a beautiful child you will love and cherish…”  Everything was “won’t, can’t, shouldn’t, don’t”.  But when you have a baby, when you finally get to see them, everything falls into place.  You learn how to take on what needs to be done, regardless of what that entails.  You just do it, because love is the biggest motivator of all.  Having a baby means the opportunity to love someone unconditionally; having a diagnosis of spins bifida doesn’t change that.  Just because someone has medical needs, developmental needs, doesn’t mean you love then any less.  In fact, you come to treasure them, their accomplishments and hard work, more.


What helped you and your family, or what didn’t help you? Did you encounter any blatant misinformation or misconceptions that you would now like to debunk?

For me, finding the support group on Baby Center was key.  There were tons of moms, some expecting, some with newborns, and some with toddlers, just asking questions and sharing things.  I learned so much, and received so much information and support.

Along with that support group, the blogs were amazing.  Being able to hear another parent’s voice in all this was so grounding.  The people that I have “met” online in the SB community are an amazing family.  While most of us have never met in person, knowing there is always someone there who will listen and fully understand is an amazing thing.  I am excited that Emily is here in this day in age, where she, too, can connect with people all over who have a true understanding and sharing of what her thoughts and life may be.

There are a lot of misconceptions out there with regard to disabilities.   I know many people look in on our life, look at Emily and pity us.  They make a two-second assessment of her, based on the walker, and assume life is hard, tough, and sad.   I know this because people approach her, and “tsk” or “awwww” with pity; they tell me they will pray for her, and instruct me to do the same.  Please don’t pity her!  I don’t want to trivialize how hard she works –because she is the hardest-working child I know- or trivialize how challenging it is to manage many aspects of spina bifida.   But everyone is working through, or dealing with, something in their life.  I can totally see they are just processing what they are seeing, but therein lies the issue: people are so unfamiliar with other people, kids, of all walks of life and with various medical diagnoses that they are almost startled.  For some people it is the first time they have ever seen a pediatric walker – people will say “I had no idea they made walkers so small” – which means they never conceptualized that a child might not be able to walk.  This is what I hope to see changed.  Society as a whole need to be familiar with images of people in walkers, wheelchairs in print, television, and media.  Our norms are shaped largely by what we see and hear through these venues.   Where are the daily images of someone using a walker, in a wheelchair?  Having a kid on the cover of a mainstream magazine, who has SB, or who is using assistive technology, should be a regular occurrence; no big deal, because we have fully embraced that as typical in daily life and society.  We have far to go with society as a whole – but we have a responsibility, as her parents, to facilitate this change.

 

Although her parents have rearranged their schedules to incorporate a rigorous regimen of several therapies for Emily, Elizabeth says that soon became their “new normal,” and she is thriving. 

 

 

 How is Emily doing today? What are your hopes, dreams, and goals for her as she grows?

Emily is doing amazing!  She will be four on June 1st and stays home with me (I have a small, web-based business, so I work from home).  Right now she receives Physical Therapy in-home twice a week.  We have had the same therapist since Emily started therapy at three months.  She has been with us and watched Emily grow, and her support and encouragement of Emily has been crucial.  In addition to the PT twice a week, she has aquatherpy once a week, hippotherapy once a week, Speech/Articulation once a week, and Occupational Therapy once a month.  Outside of therapy, she takes swim lessons once a week and we attend a music class weekly.  She is your typical three-year-old: she loves everything Disney – all the Princesses, Mickey Mouse, you name it.  She loves pop music and can identify the song [and] artist in almost a note.  She has wonderful manners, and is super easy-going and friendly, just genuinely friendly all the time.  When we go out, she walks right up to people and says “HI!  What’s your name?” Inadvertently, she is helping break down that person’s judgment of her – many are able to look past her disability, and see her.

She is going to run her second kids’ dash at the Disney Marathon on January 12 and is super excited about getting a bib and a medal!  She has been practicing running in her walker, but honestly she’s already quite speedy!

And of course, our biggest news is, she is the cover model for the February issue of Parents Magazine.  [My sister and I]  are runners for Team Spina Bifida – you fundraise for the SBA, and in exchange they support you in a race: a half or full marathon, triathlon, etc.  So when Parents Magazine reached out to SBA in October, looking for kids interested in appearing for a photo spread including kids of all kinds, SBA reached out to us.  Emily and I headed to NYC for the shoot in October.  It went very well, and two weeks later, Parents e-mailed us, asking that Emily come down and do a cover try!  We were blown away.  We have never even had a family picture, any kind of professional pictures!  We have never even done pics of Emily at JCPenney or anything!  Emily had a blast on set; she asked for Lady Gaga to be played and she had everyone dancing away.  Everyone at the shoot was super professional, yet fun and inviting.  It was an amazing experience for Emily, and I have to say one of the best experiences for me: to watch Emily be photographed for the cover of a mainstream magazine was overwhelming.

What made this so important to us is they were not doing a story on spina bifida.  This is a mainstream parenting magazine, the first of its kind to feature a child who happens to use a walker, or crutches, on the cover.  Emily isn’t on the cover for special needs; she isn’t on the cover because they are taking about SB.  She is on the cover because she did awesome at the first photo shoot and they saw beauty in her, true inner beauty.  And in addition to the print copy, she will be on the cover of the tablet version, and she is the banner on the FB Parents page.  Any other places where Parents is, that image will be [there], like [on the] Parents Pinterest page, for example. [Check them out on Twitter, too!]

In addition to the cover, I did a brief interview with the Editor-in-Chief, Dana Points. That video is on their website and may also run in the tablet version of the February issue.

And there was a brief interview with Ellen Seidman, who blogs for Parents and has is the author of the blog Love That Max.  It’s my understanding that there will be an inverview with Dana Points, the Editor in Chief at Parents, about the shoot on Ellen’s Love That Max blog on Monday.  Here is the article from the Parents website.

I haven’t received the February issue as of yet, but there may be a photo inside the magazine as well, of Emily doing a Valentine’s craft.  But I don’t know for sure (I’m dying for my copy to arrive!)

We have the same goals and dreams for Emily that we had before we even conceived her.  We want her to be independent, confident, strong, and happy.  We expect her to go to college, get a job she loves…and if she wants to be a pastry chef, a teacher, a doctor, a musician, a writer, a businesswoman – whatever she chooses as her path, we will stand behind her and support her.  During the Parents video interview, Dana Points asked the same question…what are our hopes and dreams?  I stopped for a moment and looked over at Emily, who was dancing away, having a truly glorious time.  And I thought about how dark things had been the day we heard her diagnosis, and how uncertain I had been of what her future looked like.  What a blessing, to have trusted things would be okay.  Even though I have no idea what her future holds, I am excited to be part of the journey.

 

 

What do you feel is the most important thing that a new family welcoming a child with SB needs to know? What do you wish you had known/been told when Emily was born?

Get a great support team: get your child into Early Intervention as soon as possible, and make sure you have a service coordinator who will listen and fight for you.  Get a great team of therapists and don’t be afraid to ask for a new one if they aren’t working with you or setting the bar high for your child.  Look into whatever programs you can get to help cover costs: Medicaid waivers, SS [social security], grants, etc.

Trust your instinct as a parent and fight for what you want for your child.  We learned this very early in Emily’s life.  Often professionals will tell you what your child needs, but you have to question their value system, and see if their recommendations match your family’s goals.  When Emily was about one, we wanted to get a loaner-stander to bring her upright.  It was our belief that her cognitive development would be enhanced by being off her stomach or back on the floor.  When we approached the Ortho[pedic surgeon] about it at clinic, he shot us down without reviewing Emily’s medical file, without examining her.  He told us we needed to come to terms with her diagnosis, and accept she wouldn’t walk.

This was unacceptable to us.  We had fully accepted that she may not walk – but never would we allow someone else to tell us she couldn’t do something.  Instead, Chris and I believe in giving Emily as many tools and therapies and technology as we can, and letting her show us what she is, or isn’t capable of.  We promptly changed orthos, and perused the stander through other avenues and had her in a stander within a month.  We now drive out-of-state to see [the] ortho at Shriners in Erie, PA.  They treat Emily as an individual, and work with us as parents.  As you can see from her pictures, she is proficient with her walker, and the same goes for her crutches.  And, on October 23rd, during physical therapy, she turned to our therapist and said “Don’t help me!  I will walk all by myself,” and walked across our family room, wearing her AFOs [leg braces] but completely unassisted.  While she will need the use of her walker or crutches when walking to preserve her hips and knees, we couldn’t be prouder of Emily for establishing what she can do.  She defines spina bifida; spina bifida does not define her.

 

Blissful Emily. 

 

A big thank you and much love to Elizabeth and Emily for allowing me to publish their story. I recognize that every parent of a child with spina bifida has a unique story to tell, one that is theirs and theirs alone. I will be forever grateful to them both for opening up to me, and to all of us. They’re indeed making this world a better place– by making spina bifida “normal.” 

 

Love,

Laurita ♥

 

**Publisher’s Note:  This post is in no way sponsored by or affiliated with Parents Magazine. All photos used in this post are owned by Elizabeth Keicher, and have been published with her consent.