To Tanzania with Love | The Laurita Spina Bifida Project wants to donate wheelchairs

“How sad it is that we give up on people who are just like us.” — Fred Rogers (“Mr. Rogers”)

I don’t really remember what it’s like not being able to walk. As parental anecdotes recall, I was about two years old when I took my first steps. My parents were overjoyed, of course, but probably more than most parents, because I have spina bifida. According to my doctors at the time, I wasn’t supposed to be able to walk.

I may not remember what it was like crawling around the house or not being able to stand up, but, at age 30 now, I am beginning to grasp what it means to have limited mobility. My knees and back hurt constantly, and my wheelchair is getting much more mileage than it used to.

As I recently learned through a good friend I’ve never met, there are people in Tanzania, and in many other countries, who do not know the privilege of owning a wheelchair— what a blessing it is to have the equipment to facilitate mobility.

Little did I know until these past few weeks, that there are people on the other side of the world who would give anything to have the freedom I am often complaining about— the freedom to move.

That’s why my non-profit organization, The Laurita Spina Bifida Project, has offered to help the Association for Spina Bifida And Hydrocephalus Tanzania (ASBAHT) by raising funds so they can purchase wheelchairs, walkers, crutches, and a prosthetic leg for a young girl with spina bifida.

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Image courtesy Sifa Sylvia, ASBAHT 

A shifting perspective

It really gives me pause to reflect on how grateful I am for my “inconveniences.”

Over there, where my friend lives, people aren’t griping because someone took the accessible parking space. Or because their wheelchair won’t fit in their friend’s car when she offers to give me a ride.

They don’t complain about these problems because they don’t exist. Because access to the mobility devices they need doesn’t exist.

Many moms of children with spina bifida and hydrocephalus must push their children in strollers instead of carrying them. If they don’t have access to the brain surgery to have a shunt placed, the children’s heads grow until the parents can no longer carry them. Even these strollers are very hard to come by. As for me, I am only vaguely reminded I have a shunt in my head when the weather changes and I feel a slight headache.

This holiday season, I am fully committed to making the freedom of mobility a reality and not just a dream for at least several people in the Tanzanian spina bifida community…people who are much like me.

Maybe this will make a huge, life-altering difference for them. Maybe it won’t. All I know is, everyone needs someone in their life who refuses to give up on them.

I have you guys. Now, it’s my turn to be that person for somebody else.

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Image courtesy Sifa Sylvia, ASBAHT 

How you can help

What we need, first and foremost, is monetary donations. Whether it’s $5 or $500, every dollar makes a big impact when you add it all up. Trust me on this! How incredible is it that for the price of a latte macchiato you bring us one step closer to giving a deserving human being the gift of mobility?

 

Here’s a rough estimate of what each item costs, in U.S. dollars:

• Wheelchairs – $140.00 each

  • Walkers – $70.00 each

• A prosthetic leg for a youth with spina bifida – $460.00

Other ways to help out

If you own a company or know of a company or organization that might be interested in partnering with us to help raise the funds, please reach out to me at laurita.tellado@gmail.com. I truly believe “it takes a village,” and you are all my shining example of that!

Consider this campaign for your company’s end-of-year charitable contributions. Every donation is tax-deductible.

Also, since there are just so many wonderful social good campaigns during this time of the year, we need your help with getting the word out. Please, post to Facebook, Tweet, share, blog, Pin, Instagram post, etc.! There is truly no action that is too small to make a difference.

Please share / post using the hashtags #TheLSBProject , #SpinaBifida, and #Give5ToThrive (because we want to encourage that no amount is too small!).

Keep up with this campaign by following and connecting with us on social media:

The Laurita Spina Bifida Project on Facebook

@TheLSBProject on Twitter 

@TheLSBProject on Instagram

Remember what it’s all about

Finally, keep in your mind and heart that we are doing this to pay it forward. We have been so Blessed throughout this entire process, and I’m grateful for each and every person who has been part of The Laurita Spina Bifida Project’s journey thus far.

In the words of my friend Sifa of Tanzania, the angel behind-the-scenes who has put me in contact with the ASBAHT: “It will be an honor for ASBAHT to partner with you or any other organization or individuals out there with the heart to help the forgotten children, youth, and adults living with SBH in Tanzania.”

Thank you, Sifa. We’ll do our best.

Love,

Laurita ♥

My Actual Letter to the Mother who Aborted her Baby with Spina Bifida

 

A note to my readers: 

Recently, I received an E-mail from a mom who contacted me for advice. She had a pregnancy affected by spina bifida, and at the recommendation of her doctor— she chose to abort. In addition, she wanted my advice on how NOT to have another baby with spina bifida. As you might have read in my previous post, I felt the entire gamut of negative emotions upon opening and reading that E-mail— anger, sadness, judgment towards her, and just an overall sense of melancholy that seemed to pervade my emotions for several days. 

In a desperate attempt to sort out my thoughts, I took to the only place I felt I could safely share my heart— this blog

 

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The backlash was almost immediate. I expected there would be pro-choice advocates (I am still very much on the fence in the abortion debate— so don’t ask me) who would argue that she acted on her rights. Really, I anticipated that. 

What I didn’t expect was the anger and vitriol that spewed, even from moms of children with spina bifida who know me personally. I was accused of not being a good advocate because a good advocate “doesn’t think of her own feelings.” 

How is it even possible to do that!? I could never put my own feelings aside, for it was my own feelings that helped me become an advocate for the spina bifida community. It is my emotions that fuel my passion for activism and education. I could never turn off my emotions. That is just absurd. 

However, I also was not prepared for the outpouring of love, support, and encouragement from many friends and followers who applauded my article. They felt it was a good tribute to how many parents of kids with spina bifida— and adults with SB, especially— feel when they come across stories like these. I will be forever grateful especially for these people, for they buoyed my spirits up during one of the most challenging times I’ve encountered in my 5+ years of blogging. 

What a difference four days makes! 

After a few days away from the circus (really, it was ridiculous!) I decided to finally reply to this woman with a clear head and lighter heart. I’ve also been physically sick with various illnesses which have had me very preoccupied. 

So, without further ado, this is what I actually said to her— verbatim, raw, uncut, no edits. And it was from the heart. 

 

Dear _____________,

Thank you so much for contacting me. I can’t imagine how difficult it must be to contact someone with spina bifida after losing a baby with spina bifida.

First, let me say I am very saddened and sorry for your loss. However you lose a baby, it is heartbreaking and it must be so difficult. I admit, upon first reading your E-mail, I was quick to judge you. I felt angry that you did not want to have a baby with the condition that I have, as if having spina bifida means that my life is not worth living. This is why I did not answer you immediately. But after much thought, crying, and praying, I have come to realize that there are many like you who do not have the information they need to make this decision. I know for a fact that many doctors put pressure on mothers to have an abortion when spina bifida is diagnosed.

I have lived with spina bifida my whole life, but I have never been a mother, so of course, my advice is based on what I know from having spina bifida myself.

But, I receive many E-mails from mothers who are pregnant with a baby with spina bifida, and many who have children with spina bifida.

Let me start by saying that there is no way to guarantee that you won’t have another child with spina bifida. Nobody can promise you that.

Sadly, there has not been much research or information about spina bifida until recently. Honestly, the only way to guarantee that you won’t have a baby with any disorder or disease is to not get pregnant. A B-vitamin called folic acid has been shown in recent years to help prevent a child from having spina bifida, but even if you take it as recommended by a doctor, it only works about 70 percent of the time. So, that is not going to promise you a baby without spina bifida.

Here is the link to some information about folic acid published by the March of Dimes, a wonderful organization that helps prevent birth defects and support families of children affected by birth defects: http://www.marchofdimes.org/pregnancy/folic-acid.aspx

Finally, because you seem very determined to not have a baby with spina bifida, the final piece of advice I can think of offering you is this: if, by chance, you do end up having another baby with spina bifida, please know that it is NOT a death sentence, or a tragedy. 

I have met many, many families who have children born like me, with spina bifida, and who, like me, grow up to be happy, successful, even healthy adults. Yes, they sometimes go through many surgeries or other medical complications, but most can grow up happy and make friends, and as adults, get jobs, go to school, and even get married and have their own families. I have played with many children with spina bifida I have met through these families, and they are absolutely beautiful and precious, and very smart and active.

It is possible to have spina bifida and live a happy, healthy life. 

I work as a blogger, writer, and social media professional. My work has taken me to different places, as I am often invited to speak at events and conferences around the United States. I have connected with adults with spina bifida and families all over the world who reach out to me for advice or simply to know that someone else understands.

I do not mean to say that I never get sick or feel pain, because I do. I have had 19 surgeries and many, many hospital visits. My family has been through a lot, and it is not easy. Pain is a part of life, and even “healthy” children will get sick, get hurt, and suffer at some point. Every parent feels their job is to take away their child’s pain, but like my parents have done with me, their job is to stand by me, to hold my hand when I am having a hard time. They are my best friends and love me so much.

So please don’t think that having spina bifida means I have had a horrible life. Thank God, I live a wonderful life and I feel grateful for every minute of it.

I hope this serves to encourage you, no matter what doctors say, no matter what others say to you, to be the best mom you can be for your child, whether he or she has spina bifida or not.

That’s all you can really do.

 

May God Bless you and please contact me if you want to talk some more. I am here.

Laurita

 

To the Woman who Aborted Her Baby with Spina Bifida

 

Dear Woman,

First off, let me say that I am not writing this on an impulse. In fact, I have given this a lot of thought and have decided to give this situation a “grace period” in which I could cool off, reflect, cry, pray, gain perspective from others in your situation, and allow myself enough time in which to answer you without anger or bitterness.

Of course, this time has allowed me to be more merciful and fair to you. But please know that I needed this time as much as you did. It’s not easy to for me to process my emotions about an issue that is so personal to me.

But, you E-mailed me asking for advice and answers. After choosing to terminate your pregnancy of a child with spina bifida, you want my advice, my insight, my wisdom, on how to have a “healthy” baby.

How’s this?

I have nothing to offer you. No advice, no answers, no wisdom, no tips, no magic crystal ball to predict what your next child will be like. 

My first instinct, upon reading your E-mail to me, was to hate you. After all, you managed to break down wall after wall of cautious, precarious illusion of self-esteem that I have spent 28 years painstakingly building. And for 28 years, it has worked for me.

 

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My Mami when she was about eight months pregnant with me. I am my parents’ only child.

 

When I first began blogging five years ago, I was moved by the many moms who contacted me. Most have had children with spina bifida, and some were pregnant with a baby with spina bifida, and wanted advice on how to handle the birth of a child with “special needs.” Or maybe they wanted solidarity; just the notion of knowing someone else out there in cyberspace can relate. I was elated at the idea of being able to help these women; give them a glimmer of hope for what the future held for their children. I offered them my friendship and unconditional support, and in return, I have been rewarded many times over by their reciprocity, their encouragement in my difficult times, and their genuine happiness at my triumphs.

Then I opened your E-mail. It’s as if five years’ worth of fortresses of support and encouragement from these moms and little white lies I told myself quickly eroded around me. I was exposed. Vulnerable. You shattered my illusion of invincibility.

I built a community of support and encouragement, of sharing knowledge along with the good, the bad, and the ugly about spina bifida. Women all over the world contact me to thank me for simply sharing my story, trivial as it may seem to many. Because the story of my normal yet fulfilling life gives them hope. It helps them to know their children can aspire to this.

And yet, I cannot help you, because you aborted your baby. You cut the common thread we would have shared. Now all I see is a large, dark chasm between us, because I am nothing like you. 

No, I am that child with spina bifida, the one you chose to abort. I look in the mirror, and I see the life that was discarded because it wasn’t deemed worthy of living.

And you ask me for advice because you don’t want your next baby to turn out like me.

And I am angry beyond words. Because in spite of all I have accomplished in my life, no one wants to have a child like me.

Not even my own mother would have wanted that. But she did.

 

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I was about 18 months old in this picture. Whether or not Mami envisioned having a baby with spina bifida, she and I have always been thick as thieves.

 

And that, plain and simple, is what frightens me the most. That maybe, just maybe, your story and my mother’s are not all that different. You each won the lottery that no one wants to win.

I wish you well…and maybe next time, take a second glance at your lottery ticket.

It’s Never Too Early #RSVawareness #PreemieProtection

 

This is part of a sponsored collaboration with MedImmune and Latina Mom Bloggers. However, all opinions expressed are my own. 

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As many of you know, one of my greatest passions in life is raising public awareness of spina bifida and the challenges that affect people living with SB, as well as the accomplishments, talents, and abilities of these very people.

Along the way, I have become aware of so many other worthy causes, in particular other serious conditions and illnesses that also deserve awareness and publicity. It is in sharing information about these causes that I find great purpose.

November 17th is World Prematurity Day. (It’s actually the day after my birthday!)

With many wonderful awareness initiatives, walks, and fundraisers that now take place nationally, it’s awesome to see that much of the public is now more informed about the incidence of premature births.

What many don’t know about, however, is a disease that affects many premature babies– respiratory syncytial virus, or RSV.

It was the lack of awareness of spina bifida that encouraged me to begin writing this blog in the first place. And now, it’s the lack of awareness of RSV among parents that has compelled me to partner with MedImmune to share this vital, potentially life-saving, information. 

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RSV is a very common seasonal virus that affects nearly 100% of babies by the age of 2. 

Here are some fast facts about RSV and prematurity that  every parent needs to know: 

  • Each year worldwide, 13 million babies are born prematurely
  • 75% of parents don’t know the definition of prematurity (birth at or before 37 weeks gestation)
  •  Most pregnant women don’t ask their healthcare provider about the risk of delivering prematurely and the potential consequences of preterm birth for their child
  • Severe RSV disease is the leading cause of infant hospitalizations in the U.S., with approximately 125,000 hospitalizations and up to 200 infant deaths each year.
  • RSV season usually occurs from November through March for most of the U.S., but it varies regionally, and from year to year.

 

Most of the moms I’ve befriended or who befriend me on social media have a child with spina bifida. As pillars of strength and examples of grace and perseverance for their families, these women would do anything for their families, and it would break my heart to hear of one of their children falling ill with RSV, especially with everything else they already have to deal with because of spina bifida. 

This is why I feel it’s so important for me to share the symptoms and warning signs to look out for when diagnosing RSV. Parents, please be on high alert if your child exhibits any of these symptoms: 

  • Persistent coughing or wheezing
  • Bluish color around the lips, mouth, or fingernails
  •  Rapid, difficult, or gasping breaths
  • Fever (especially if it is over 100.4°F [rectal] in infants under 3 months of age)

There is no specific treatment for RSV disease, so prevention is your best bet. That being said, here are a few simple parents should take to help reduce the risk of your child getting RSV, particularly during high season, which is from November through March:

 

  • Understand the risk factors and ask your child’s pediatrician if your child may be at increased risk
  • Wash your hands and ask others to do the same
  • Keep toys, clothes, blankets, and sheets clean
  • Avoid crowds and other young children during RSV season

 

Yes, this information may seem very overwhelming, and I’m sure that it’s nothing that parents want to even think about. But, as the tired old saying goes, “it’s better to be safe than sorry,” and by taking the proper precautions, parents, especially those whose children have other health issues, will have one less thing to worry about. 

And it’s never too early– or premature— to take good care of our children!

For more information and tips, you can visit www.RSVprotection.com.

 

Turning My Most Painful Memory Into Triumph

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“Yes, the past can hurt, but the way I see it, you either run from it, or learn from it.”
—Rafiki, “The Lion King”

School should have been one of the happiest periods of my life. Instead, it was the source of my deepest pain—even now as an adult. I remember the taunts and jeers in the cafeteria. ”Cripple!” “Retard!” I remember trying to keep up with the others in P.E.

“Run, Forrest, run!”

In high school, I was accepted into the theatre magnet program at my school, a big deal for me. I was passionate about acting. For a while, I was part of a group of kids who were different—creative, outgoing, often misunderstood. We all got along. My ever-doting parents always welcomed all my classmates at my birthday parties. In fact, I became “known” for my house parties.

But by the time I was planning my Sweet 16 party my social life had taken a drastic downturn. I made a list of all the upperclassmen in the hopes that, by inviting them to my party, they’d accept me. A week later, no one would look me in the eye or talk to me.

I was devastated.

To read more, click here.

I’ll Show You My Reasons

 

Author’s Note: This post was written in October 2013. Over a year later, I still feel this way. Thank God Nicholas made a full recovery from his injuries described below. But his and my family– as well as so many other families– continue to wait for hope. We wait for awareness. 

 

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October is Spina Bifida Awareness Month. We’ve just made it past the half-way mark, and already I’m feeling like a broken record. 

I’m angry. I’m sad. I’m frustrated. I feel helpless. And all because it’s October. 

October is Spina Bifida Awareness Month. 

It’s also Everything Else Month. 

I’m not angry at the other causes– breast cancer, down syndrome, domestic violence– how could I be? They are valid, serious causes, every bit as worthy and deserving as spina bifida of being recognized and honored and supported, not just in October, but every month. 

I’m angry because the excuse that many people give to not support the Spina Bifida Cause is because they are busy supporting these other causes. 

I’m angry because they don’t get it

I’m angry because they believe spina bifida is less serious. Less worthy. Less important. 

On Monday, I visited Nicholas in the hospital. Nicholas is an eight-year-old boy with spina bifida and hydrocephalus. 

Last week, he was the victim of an unexpected, traumatic and heartbreaking incident when he was attacked in a park. While I won’t go into the details here, because it’s a situation that has caused his family– and all of their friends and loved ones– so much pain, suffice it to say he suffered two concussions and began having frequent seizures. 

These seizures could be enough to cause him irreversible brain damage. He already has developmental and speech delays because of the many neurosurgeries he’s had. 

How is Nicholas doing now? Thank God, he’s out of the hospital, as of last night. I’ve been in frequent contact with his mom, Cheryl, who is my very dear friend and who slept at his side every night in the hospital. According to her, his seizures are now under control, but only time will tell if he will get back all of his cognitive functions.

He’s not himself right now, she told me. Indeed, when I went to see him on Monday, the usually cheerful, calm eight-year-old was impatient– he even walked right out of the hospital room at one point, determined to visit the playroom. When he didn’t get his way, he growled and screamed unintelligibly, clearly frustrated.

Cheryl noted that he never behaves this way. She misses her sweet little Angel. 

There was one moment that stood out in a positive way for all of us, when a young hospital volunteer stopped by to perform magic tricks.

Nicholas lit up. His mother, and all of us that were in the room with them, watched in amazement as Nicholas even verbalized what he was feeling. He wanted to know “how he did that” when he demonstrated a trick. He walked right over to the young man and did not take his eyes off him the entire time. 

Watching him was, indeed, magic. 

Of course, many causes will demand your attention– this month, and every month. All of these are important, and we should take the time to learn as much as we can to help those we love– and ourselves– prevent illnesses and other devastating circumstances.

But, to a child living with spina bifida– and to the family that cares for him or her– often, there is no frame of reference outside of spina bifida. Sometimes, there is no escaping the uncertainty and pain that comes from knowing that someone you love is suffering. 

There are plenty of moments, like the one we witnessed with Nicholas, when you get a glimpse of hope, of recovery, of that return to the simple joys of childhood as it should be.

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Happier times. Celebrating my birthday 2 years ago with Nicholas and his family– dad Jerran, mom Cheryl, and big brother Daniel.

But spina bifida complicates things. They can turn even the most common illnesses and injuries into a nightmare. Sometimes, we lose hope. 

During those moments, we try to choose to hold on to the moments we’ve enjoyed– the moments that make us laugh out loud, even through tears. The trivial moments. Sometimes one trivial moment can matter more than 1,000 serious moments.

But, my anger remains unassuaged. People still dare to question why this matters to me. 

I can only think of one good reason: 

Because I’ve been there, too. 

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Just days after I was born. The battle to survive and thrive with spina bifida begins almost immediately after birth for most of us.

 

BlogHer was very gracious in allowing me to share my story with their many followers! Please read, comment, share my post, and let BlogHer know that we need more stories about spina bifida awareness. 

Love,

Laurita

Help Keep a Hero Moving Forward

A few days ago, a longtime friend of mine, Julie Harley, reached out to me and told me about a contest she entered for her daughter, Ruby. Ruby has spina bifida. Ruby also has been diagnosed with autism.

As a mom, Julie spends a lot of time, energy, and love making sure Ruby and her sister have the best quality of life possible. I remember several years ago, the first time she contacted me through Twitter. She seemed like most of the fabulous moms I know– worried, anxious about the future, often frustrated with the lack of resources or knowledge in the community.

A precious moment between Julie and her daughter, Ruby.

 

Julie is not like most moms, though. She might be like most moms in the spina bifida community– strong-willed, determined, compassionate, and activist-minded. She also isn’t afraid to share even her family’s most vulnerable moments, in the hopes that their story will help others.

One of the greatest challenges Ruby went through recently was when she had to be on a strong antibiotic for an infection. As a result, the prolonged use of the antibiotic resulted in her contracting C-Diff, a dangerous infection that is very difficult to get rid of.

In addition to her daughter’s own challenges, Julie has struggled through back surgery and multiple knee surgeries, making it hard for her to lift 75-pound Ruby into their current van.

Now, she needs the support of her community– our community. She has entered to win a custom wheelchair-accessible vehicle so that she can continue giving beautiful little Ruby an amazing life!

Normally, I know I don’t write posts like these. But, I have come to care so strongly about the Harley family, as they are a true example of people who are always smiling, no matter what they’re going through. I have nothing but admiration for all of them!

And while Ruby is indeed the focus of this contest– the little heroine– there is no doubt in my mind that she inherits her courage and resilience from her incredible mom.

Please, take a moment to visit this link, and vote for Ruby. It won’t take up more than 30 seconds of your time, but it will be life-changing for Ruby and her family.

 

Love,

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. 

Get a FREE Baby Carrier When You Purchase a B-Agile Stroller

 For all you parents of young children, you’ll want to read on to find out about this great deal from Britax!

Until September 30th, when you buy a B-Agile Stroller, you will get a baby carrier FREE. Yep, I said the magic word! 

Get a FREE baby carrier with the purchase of the B-Agile stroller. Sweet deal, eh?

 

This innovative stroller is “Travel System compatible” with Britax car seats, as well as with other major car seat brands, when used with the Britax infant car seat adapter (sold separately). 

 

The three-wheel stroller is designed to improve steering and maneuverability, and when it comes to your little one’s comfort, the possibilities for reclining are endless! Plus, with the All-Wheel Suspension, your tot is guaranteed to have a smooth ride. 

Check out this entertaining video featuring the quirky members of Britax’s B-Ready Stroller Street Team! They took New York City by storm as they demonstrated the strollers to eager parents. One lucky dad was the winner of a stroller for his child! This is perhaps the best way to see these sets of wheels in action. 

 

 

So, parents, don’t wait too long to get this high-tech set of wheels for your child. You only have a week before this opportunity rolls on by. 

 

**Disclosure: This post is sponsored by Britax and I will be compensated. I am a member of the Britax Latina Advisory Board. All ideas and opinions are my own. 

Announcing the Winners of Our First BRITAX Giveaway!

For a week, moms of young children, as well as expectant moms, filled this blog with excitement– and comments! I want to thank each and everyone of you who entered our very first giveaway with Britax.

And so, without further ado, the envelope, please…

The lucky winner of Prize Pack 1, which includes the Head & Body Support Pillow as well as an EZ-Cling Window Shade, is….

 

a Rafflecopter giveaway
  Astrid Rivera!    And the winner of Prize Pack 2, which includes a Stroller Board and a Kick Mat, is…   a Rafflecopter giveaway

 

Natalie Shmigelsky!

 

Congratulations to both winners! They will both be notified by E-mail today. Please be sure to respond to me with your shipping address so that Britax can send you your prizes. :)

Thanks again, and look forward to more giveaways– as well as more great content in general– on Holdin’ Out for a Hero.

 

Love,

Laurita ♥