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.

13124802_1047111855378039_7534330809870307715_n-2

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.

13151889_1047111848711373_7458864981166002702_n

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 Sin of Omission

DuctTape

 

Yeah, it’s been a while, to say the least.

I spent the last few hours posting photos, status updates, and responding to Tweets about an event I attended in Orlando, and which I plan to write about on my other blog.

Earlier tonight, I put on my casual-dress-professional-cold-weather attire and was present at an exclusive preview tasting at a chocolatier.

I sipped great wine, ate fine chocolate, and mingled with friends, old and new.

We exchanged lighthearted conversation about our blogs, and weighed in on other recent events many of us have attended.

I exchanged hugs, social kisses, and sincere thanks to the people who hosted and invited me.

And I did it all with the utmost sincerity. Of that, you can be sure. 

No one knew that, for about a week, I’ve been dealing with a persistent, painful bladder infection that has me cringing every time I pee (a.k.a. “self-cath,” but whatevs. Peeing is peeing.).

No one probably imagined that, every night for the past three nights, severe bladder cramps have kept me up late and have almost brought me to tears. (Well, not really close to tears– but only because I have a pretty high threshold for pain. I’ve grown “accustomed” to it, if that’s even possible.) 

No one could have known that, just this afternoon, I was on the phone several times with my urologist’s nurse, scheduling what will be my first appointment in years with him. I’ve been in a urology limbo of sorts, because he is a pediatric urologist, and while technically, he is supposed to see patients until they turn 21, I am a “special case,” because I have spina bifida and an augmented bladder. He performed my bladder augmentation surgery– my most invasive and dangerous procedure to date– when I was 10, and I trust him with my life. 

Indeed, no one, save for my parents, would have known any of this, because, simply put, I haven’t talked about it. 

And why would I talk about it?

Since the holidays, I’ve been to numerous blogger events, celebrated birthdays, weekday happy hours, workshops, and the like.

My posts on Facebook have often been the trigger for playful, harmless jealousy. Friends often comment, wishing they had my life. From what I usually post on my Facebook profile, I can’t say that I blame them. By all accounts, I seem to lead a pretty fabulous life. 

I’ve got news for you, though.

Everyone omits on Facebook. 

Yep, that’s right. From the bitchiest posts to the statuses that are downright inspiring, we are all guilty of carefully vetting and considering the content that we post on our social media profiles. 

Why would anyone assume I am an exception? 

In fact, if anyone has good reason to filter her output, it’s me. 

Because my girlfriends don’t want to hear during our ladies’ night out about how my urine stinks of ammonia and looks as murky as swamp water.

Because, as bloggers, while we all over-share to an extent, no one wants to hear at a professional gathering of social media influencers how Miralax isn’t doing the trick for me just yet.

Because, God forbid I should choose the joyful family Christmas dinner in Puerto Rico as the venue for disclosing how I’ve totally slacked off on my neurosurgery stuff and am now desperate to schedule a follow-up with my neuro to find out the results of my MRI, which I had done before the holidays.

Because God forbid I be more human than people can actually bear. 

Unsurprisingly, the issues I just described above (and many more) are very common topics of discussion on many of the private online groups and forums I’m a part of that pertain to life with spina bifida.

You might find it odd, but I actually don’t share too much in these groups. Don’t get me wrong– I’m eternally grateful for the love and support many of these people show me and others with spina bifida. I’ve forged many great friendships with parents of children with SB, and with adults with SB, all over the world.

I guess that I don’t feel the need to share everything about the spina bifida part of my life with them. Heck, they majored in this, as did I!

But I want to share it with you. 

And I want to be able to share honestly and openly with you– without any of the following responses that I’m dreading right now, and that I always dread:

1. Pity. Please, absolutely NO “I’m sorry you have spina bifida” talk. It makes me feel as if you believe that living with spina bifida is pitiful and shameful. And trust me– I don’t need that. 

2. Discomfort, awkwardness, squeamishness. I’m sorry if I slip up during lunch and casually mention I have to go cath. Usually I say “pee,” but occasionally I will slip up and make some allusion to the fact that I use a plastic tube to urinate. Obviously, I overlooked the fact that you are not as used to this as I am, and any remark that you make along the lines of “ew” and the like will only make you come across as a jerk. Please, grow up and get over yourself. Call me when your pee is prettier than mine.

3. Holy talk. You know what I mean here. I consider myself to be a religious/spiritual person with my own faith and personal relationship with the Creator. And if you say you’ll pray for me, I’ll gladly accept your prayers, good vibes, etc. But please don’t attempt to make yourself feel better about my ailment by saying that “everything happens for a reason.” It’ll upset me, and will only serve to make me wonder why this “everything” doesn’t seem to be happening to you. 

Simply put– I don’t expect everyone in my life to relate to my struggles, anymore than you might expect me to relate to all of yours. If you can’t relate to the situation, that’s perfectly fine. I think admitting you can’t understand what it’s like, is actually the first step towards putting yourself in another person’s shoes.

The ugly truth about life is that permanent chronic conditions like spina bifida can’t be cured, anymore than you can bring your deceased loved one back from the dead or force the cast of F•R•I•E•N•D•S to do a reunion.

It’s just not going to happen like that.

We all go through difficult, challenging, brutal stuff. So from here on out, I promise to try to level with you. I’ll try to be honest.

Are you willing to try to listen?

 

“Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend.”   –Albert Camus 

 

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. 

 

cropped-Nicholas_and_me_cover.jpg

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.

DSC02970

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. 

Scan 112750001

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

This Week’s Rundown– Keeping Spina Bifida “Relevant”

Perhaps the toughest challenge I’ve faced in the past nearly two years of Holdin’ Out for a Hero is keeping the spina bifida cause relevant. This not only means keeping it at the top of my feed on Facebook, on Twitter, and on other social media sites. It also means I have a hard time finding new and different ways to write about what I write about that will keep both you, the reader, and me, the writer, interested and engaged.

It’s especially frustrating whenever I realize I’ve missed a key opportunity to promote the cause. Some days, it feels like the public just isn’t ready to learn about spina bifida!

Me at the UCF KnightWalk for Babies this year sporting two of my most defining items: my SBACFL T-shirt-- and my laptop. ;)

 

There are those days when I wish I could hand people a pair of special binoculars through which they could see the world through my eyes— and truly experience life with spina bifida, even if only for a few minutes.

These thoughts weighed heavily on my mind as I heard of my little friend Chance’s back-to-back hospitalizations for shunt malfunctions this past week. He had just returned from the hospital after his sixth surgery when his mom, Amanda Kern, noted some strange symptoms in her baby boy.

He ended up having to go back in for two more surgeries. I thought about and prayed often for their family, as I have come to know Amanda and care for each of them. My heart hurt to “watch” them go through all this. Fortunately, Amanda is very efficient at keeping all her friends and relatives updated!

Chance is now back at home, and Amanda has been witness to yet another miracle. She visited Mary, a woman I met at the SBACFL playdate recently. When I met Mary, she was very pregnant with her third child, who was diagnosed with spina bifida. I can now announce happily that Mary’s son, Mason, has entered the world.  He is currently in the Neonatal Intensive Care Unite (NICU), so I ask that we all keep him and his family in our prayers. Still, it looks as though Mason is off to a beautiful start.

So, to bring it back to my earlier frustrations: how do we keep spina bifida relevant? Well, people might sometimes ignore a 24-year-old who’s aging out of that stage where people still feel compelled to take action on my behalf. But we can’t ignore the children. Look at them. They are the next generation of the spina bifida community, and they’re going to need all the support they can get. With prevention methods being highly publicized, and quality-of-life issues being swept under the rug, they need someone who will fight for them.

I believe this is the first time I wore my "Redefining Spina Bifida" T-shirt. I was at the Salvador Dalí museum!

And it’s not just Mason and Chance. It’s Lina, the young woman who desperately needs a kidney. It’s Masha, the little girl in Russia who yearns to find a family in the U.S. who will take care of her and love her like any other child. Often people will see or read about these stories and not connect them to the spina bifida experience. But, it exists. People like us are out there. We’re not last century, before folic acid consumption. We’re today. We’re NOW. 

To help keep the spina bifida cause  even more relevant, please donate to the Spina Bifida Association of Central Florida’s Walk-N-Roll fundraiser! Help me reach my goal of $1,000 so that this organization can continue making a different in the spina bifida community.

 

Love,

Laurita