As Long As It’s Healthy– Right?

We’ve all heard it. I read it in my Facebook feed all the time– usually whenever someone asks about a baby’s sex, many parents will respond with the same canned, well-meaning response: “Oh, we don’t care, just as long as it’s healthy.”

Ouch.

I know you’re probably thinking I’m an insensitive jerk. Believe me, I don’t mean to be. In fact, I wish for the well-being of all of my friends’ and loved ones’ children. And it’s a perfectly natural parental desire to pray for a healthy child.

I’m sure my parents did.

 

 

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I’m sure my parents stressed out endlessly and spent many a sleepless night, worrying about the health and well-being of their unborn baby back then. Any good parent does, although I’m no expert.

No, I’m not a parent. I’m not that kid, either. I’m the other one. You know, the one you prayed your heart out that your child wouldn’t be anything like.

The unhealthy kid.

Before this turns into a folic acid debate (don’t we just love those?), please keep in mind– I was born before the medical community was seriously beginning to talk about how to prevent spina bifida with the public. My parents weren’t warned about how beneficial folic acid might be before pregnancy. That being said, they did everything they knew to do to ensure my health and well-being from the start.

I’m sure my parents felt they had been kicked in the gut really hard when they found out I was born with spina bifida, hydrocephalus, neurogenic bladder and Arnold Chiari malformation, among other issues, all serious conditions that would require surgery in a matter of hours.

I’m sure Mami woke up feeling disoriented and confused when she found out that, instead of sleeping beside her, I was, at less than a day old, recovering from my first surgery– in an incubator away from her, in another hospital.

And, I’m sure Papi felt completely torn in half at having to rush between visiting Mami, who was recovering from a C-section and peppered him with questions about what I was like every chance she got, and visiting me, this girl he just met, who was completely dependent on doctors and nurses to keep her alive. Mami didn’t get to see me at all for five full days.

I know they felt helpless.

Mami recalls sitting in the surgery waiting area while I was having one of many shunt revisions (brain surgery, for the freshmen). Another family was waiting for a woman to give birth, and they were speculating whether they would need to buy blue or pink clothes. Mami felt livid. She thought to herself, “I wish I had their concerns!”

Thirty years and 19 surgeries later, my parents are undeniably happy. They adore me, and I adore them. Indeed, if anything, living with spina bifida and hydrocephalus has brought us closer, and it gives me such a great peace of mind to know that, challenges and all, they wouldn’t change me for an instant.

 

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Their “unhealthy baby” became a polished public speaker since elementary school, being invited, often as keynote speaker, at fundraisers and benefits for different charitable organizations.

Their “imperfect child” graduated from the University of Central Florida with a B.A.

Their “sick kid” fought to make her community college accessible to all students, and met with the college’s senior administration to make it happen.

Their “disabled daughter” (ugh– the worst!) started a non-profit organization at age 27, The Laurita Spina Bifida Project, connecting people all over the globe who live with spina bifida, thereby fulfilling a childhood dream.

 

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They no longer wish for that “perfect, healthy baby.” (And please, define “perfect.” I’d love to hear that definition!)

They wish and pray for my health and well-being, whatever that means for me at any given time.

They cry with me during my setbacks, and they rejoice in my triumphs and accomplishments. We work alongside each other, we pick each others’ brains, and we travel together– a lot. We eat, drink, and are merry. We go to Church, and then we go to Happy Hour. We entertain friends and family at our home.

We live a great life. It is not perfect, and yet, it is ours.

I no longer feel afraid that my parents grieve what could have been. I no longer fear that they are waiting for that “healthy baby.” They know now what’s possible, and whatever seems insurmountable to us, we muddle through it with faith and love for each other.

And, rest assured, we are never bored. Perhaps “healthy” is overrated, after all.

My Sin of Omission

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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 

 

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 ♥

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