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.

Join Me in Getting Covered #TakeCareChat

Disclosure: This post is part of a campaign with Ad Council and Get Covered America. I will be compensated for publishing this post and for participating in the Twitter chat. All ideas and opinions are my own. 

 

If there’s someone who truly understands the value of having good health insurance, it’s me– trust me. I certainly wouldn’t be here without the vigilant care of many good healthcare providers and nurses, and there were times in my childhood when I was literally in and out of the hospital every other week.

Sadly, more than 1 in 6 Americans don’t have health insurance.

This is mostly due to one of the following reasons:

  • They don’t receive coverage from their employer 
  • They cannot afford coverage
  • They were previously denied coverage because of a pre-existing condition

 

Under the new Affordable Care Act, people cannot be denied health coverage because of a preexisting condition.  This is fabulous news for me, having spina bifida and hydrocephalus! Thanks to the ACA, insurance companies can’t turn me away because of that. 

I feel very blessed and fortunate to have access to good healthcare, and I don’t wish to take that for granted for a single second. But, if you’re not willing to take my word for it, perhaps you’ll listen to this adorable menagerie of pets who have a message for you:

 

 

What’s more, most people will have to pay a fine if you don’t enroll in healthcare up by March 31st. The 2014 fine is $95 for an adult or 1% of a person’s income, whichever is greater. (The fine is $47.50 for a child, and a family can only be fined up to $285.)

I’ll be joining Ad Council and Get Covered America TOMORROW from 1 to 2 p.m. E.T. during a Twitter chat where you can learn more and ask questions about getting covered. Be sure to follow @GetCoveredUS on Twitter and Tweet using the hashtag #TakeCareChat to participate in the conversation!

 

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In the meantime, you can visit GetCoveredAmerica.org to find out how you can enroll in health insurance, and to get answers to some frequently asked questions about the process. There are also some pretty awesome tools on the site, like the Get Covered Calculator, which can help you discover how much assistance you could qualify for to help pay for your insurance coverage.

Figuring out how to navigate the ins and outs of the ACA can be daunting, especially since it’s so crucial to your health and to the health of your family. But with the proper tools and resources, you’ll be enrolling in no time– and hopefully by the deadline of March 31st!

 

–Laurita

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