In Case You Are Jealous of My Friday Night

People often comment on my Facebook posts (especially fellow ladies!) saying what a fabulous life I have. They see me gliding from event to event, effortlessly, cozying up to public figures and instagramming delicious food (and coffee drinks)!

I don’t blame you all for commenting, or even feeling a twinge of jealousy or resentment. It’s natural, and to be completely honest, the same thing goes through my mind when I’m instagram- or Facebook-stalking my friends and colleagues.

But, do you want the brutally honest truth? Because here it is.

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There’s A LOT that gets filtered out of my life when I post on social media. Like, a hell of a lot. When I publish a photo of me in a gorgeous dress with my hair and makeup flawlessly done at an event enjoying the company of others, here’s what you don’t see:

You don’t see/hear the laughably-inevitable meltdown/pity-party two hours earlier about not being able to wear the shoes all my other girl peers are wearing (heels, stilettos, etc.).

You don’t see the panic attack I’m having as I’m rushing to make it out the door on time and have to stop and raid every drawer in the house for urinary catheters. Since they are delivered and I need a doctor’s prescription, it’s not like I can waltz into a public restroom with a few quarters and get a catheter out of a dispenser. (But you can easily find tampons or condoms, no doubt!)

You don’t see the frustration I feel when trying to find the perfect purse to match my outfit— that is, one that is sleek enough to carry easily but that will fit at least 5 catheters (because when your LIFE depends on using a plastic tube every three hours, there’s no room for guesstimating. Better to overestimate than…God forbid. And if I have an infection…forget it.)

You don’t see me up all night with indigestion because my digestive tract is much slower than everyone else’s. That expensive dinner I had cost me a good night’s sleep.

But most of all, you don’t see the struggle it is as I try my best to “fit in” (say what you will about being an individual, but don’t kid yourself— EVERYONE wants to fit in) while treading the delicate balance of staying “healthy” (whatever that means, because I haven’t felt “healthy” in many years) and being able to breathe easy and have some semblance of a social life.

That all being said, I know how truly fortunate I am. I have opportunities that many of my peers with spina bifida do not. I don’t lose sight of that.

But, today is Friday. Tonight, God willing, I actually am going out on a Friday night alone (a rare occurrence!) to attend a social / professional function. Just a while ago, I got off the phone after talking to my medical supply provider and my urologist’s office back-to-back. It feels like I am constantly having to negotiate how important a life-saving product is to me. Negotiate how many times a day I am allowed to pee. Can you imagine having your visits to the bathroom regulated? These are questions I actually get from my doctor’s office. (They will actually insist I drink more water, and then ask me why I use so many catheters!)

Not to mention my private medical insurance, which makes me jump through bureaucratic hoops just to be able to receive these bare necessities.

I don’t want to be calculating. I don’t want to be counting catheters. I don’t want to leave half of my meal untouched because I’m afraid of indigestion. I don’t want to walk into the place and immediately scan where the bathrooms are. I don’t want to wonder where I’ll park my wheelchair.

Tonight, I just want to act my age, and know that I’ve earned it. Tonight, I don’t just want to LIVE, I want to feel ALIVE, and know that my posts on social media actually reflect the fabulous reality.

Your Shoes are Killing Me

 

One of the definitive moments of the feature film, “Sex and the City,” shows protagonist Carrie Bradshaw entering the large closet of her would-be new apartment. As the lights flicker on, she takes in the size of it (really, it’s ginormous) and imagines all of the designer shoes she will fill it with.

I cringe whenever I watch that scene, as much as I love that film (can you say, “guilty pleasure”?).

Because I would never find enough “sexy” shoes to fill that closet with, even if I could afford them all.

Because the shoe industry has neglected to make shoes for women like me. Women with small feet. Women with spina bifida

For me, an assertive invitation of “Let’s go shoe shopping” from Mami evokes feelings of being a lamb dragged off to the slaughterhouse.

I’ve been that girl— the one who has broken down in the size 5 aisle of Payless, or many a shoe store. Because they don’t carry anything smaller for me

Indeed, some of my cutest “girly” shoes are in children’s sizes. And yes, they’re flats

I can’t wear heels unless they are even. None of those stiletto-style heels or wedges— even the shortest heels will have me teetering off-balance within seconds of standing.

 

Shoes

One of the few pairs of shoes in my closet that have short heels. I wore this outfit to a vintage-themed event. When I posted this as my profile pic a while back, I received compliments on my cute pose. Little does anyone probably realize I am grasping at the tree to keep from stumbling.

 

As I visit shopping malls and see signs indicating accessible entrances and restrooms, and ramps conveniently placed across from accessible parking areas, I am reminded of how far we’ve come as a society that is striving to welcome people with spina bifida and other disorders.

As I scour the ladies’ footwear section of any major department store, I am cruelly reminded of how far we still need to go. 

Indeed, I think my gender makes things worse for me as a shoe consumer. Men can get away with wearing more comfortable shoes, and even dress shoes don’t have heels. In fact, they could probably get away with wearing the same pair of shoes for a week straight, and no one would be the wiser.

The entire culture of being a woman in the 21st century is centered around footwear. “I don’t know if I have shoes that will match this outfit!” “Let’s go shoe shopping this weekend.” “Oh, my shoes are killing me, and I didn’t bring rescue shoes.” 

Guess what? Your “rescue shoes” are what I would wear to a social function. For me, there is no such thing as rescue shoes, because I cannot wear the shoes you need so badly to be rescued from. 

I can recall so many occasions on which I’ve attended parties with girlfriends. Near the end of the night, they are complaining about their shoes. “God, my shoes are KILLING me, Laurita! You are so lucky you get to use that wheelchair. Can I borrow it?”

No, you may not borrow my chair, because it is not a one-time deal. With this wheelchair, (which I use often for events, especially when I have to resort to wearing uncomfortable boots to match an outfit) comes a lifetime of regret. A lifetime of envy, resentment, and anger, because I cannot wear the shoes that are killing you right now. Because I wasn’t granted the luxury of being able to wear strappy heels that I will remove in less than two hours to dance barefoot on the dance floor after my feet have blistered.

Because as much as I hate to admit it, especially to myself, I LOVE the shoes that every woman loves— the strappy, shiny heels that you seem to glide effortlessly in, while I stumble clumsily in my flat boots.

Because Fate long ago decided that I do not get to live the Carrie Bradshaw fantasy for one lousy night, because that’s life.

Oh, your shoes are killing you? Then by all means, be my guest and remove them. You know what? They’re killing me, too. 

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. 

 

 

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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. 
 
 

10 Things About Me That Might Shock You

Okay, I really, really didn’t want to have to do this. Don’t get me wrong– I think some people’s naiveté is so gosh darn cute!

But lately, I’ve seen an onslaught of “disability is so-frickin’-inspiring” stories that have made me roll my eyes and, sometimes, want to log out of my computer for a while. :(

So, whether you’re ready for it or not, here’s the truth– the brutal truth. Granted, some of it may upset you, but I’m okay with that.

 

1. I don’t cry myself to sleep at night, lamenting that I have spina bifida. 

I hate to break it to you, but most nights, I crash into bed and sleep, non-stop, for eight hours or so, after either blogging till the wee hours of the morning, or watching a funny video or doing something else that helps me unwind. So do many of my non-spina bifida peers.

 

2.  I drink. 

Yep. I don’t mean the “stumbling-out-of-Walgreens-at-3-a.m.-after-buying-a-cart-full-of-junk-food-and-tuna-fish” drinking, but yes, I drink socially. I always drink with trusted friends, or family members around. I never put myself in situations where the person I’m riding with has been drinking. That’s just not cool.

 

3. I don’t just automatically become BFFs with everyone who has spina bifida, like me. 

It just doesn’t work that way. I love connecting with others with spina bifida, of course, and many people do befriend me after visiting my blog. But I don’t necessarily “click” with everyone who has spina bifida, and that’s fine. It would be like saying, “all Latinos have to get along,” or “all African-Americans have to get along.” Are you kidding me? What century is this?

 

4. I have many friends who don’t have what is perceived as a “disability,” and we have a great time together. 

I’ve been blessed to meet people at so many different events and conferences. Most of them have very different characteristics, and you can’t lump them into one category. I love that! When I meet people for the first time who only know me through blogging/social media circles, I am often struck by how insignificant my “disability” is to them. It’s because they met me online first, without seeing the wheelchair or other things that people might otherwise see first. They value me for my qualities, and I value them for theirs. We have intellectual conversations. We have inside jokes. We have a true bond.

 

Coffee = Bliss. :)

 

5. While romantic love would be nice, I don’t necessarily seek out people “just like me” as potential partners. 

Yep, it’s true. Believe it! I don’t aspire to a “matchy-matchy” relationship where my partner has spina bifida just like me. I look at intellect, personality, common interests and future goals as criteria for potential partners, and not their physical abilities/disabilities. I expect the same from a potential partner, too. I don’t want to be disqualified because of a perceived “disability.” It’s always a mystery why certain couples are attracted to each other. I don’t think I’m supposed to question why “some opposites attract” and others don’t. Please, don’t question me, either.

 

6. I can open doors, tie my own shoes, go to the bathroom on my own, fix myself a sandwich, etc. etc. 

While my cooking abilities are still questionable (LOL!), I do a lot of things for myself, on my own. And I’m still learning. Aren’t we all?

 

7. I can probably out-spell and out-edit you, or anyone you know. 

Writing is my thing. Spelling and grammar are also “my things,” I suppose. Name the time and place. Chuck Norris and I will be waiting.

 

8. I use a wheelchair part-time, when needed. And hardly ever inside the house. But I can dance like nobody’s business. 

I’m not talking Gangnam Style here, but I like to think I can salsa dance circles around most people. 😀

 

9. I suck at giving directions. No seriously, I can’t find my way out of a paper bag. 

During road trips where my father asks me to read a map, I usually toss the map away and reach for Google Maps on my iPhone. Siri is becoming my best friend, a.k.a. navigational device.

 

10. I don’t just think about the spina bifida cause 24-7. There are so many wonderful causes that deserve my attention. 

I love social good, and I have a feeling that I live for social good. Whether it’s through a blog post, a Tweet, a Facebook update, or a donation, I enjoy supporting many different causes. I feel strongly about supporting LGBT rights, charities that give to the poor, the homeless, the hungry, and organizations that help children and adults with different chronic conditions. I think social media provides us with some of the best tools ever to support and spread the word about great causes. It’s awesome, because social media makes it easy for us, so we don’t have to choose just one cause to throw all our support to.

 

 **Bonus Tip/Fact: If you ever need a favor from me, try bribing me with coffee.

Nine times out of 10, it works. And the other 10 percent of the time is unaccounted for. I just made it up. 😉

 

 

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.