Monday, October 1, 2012

Spina Bifida Awareness

October First.
October is a very special time of year, for pretty much everybody. I mean seriously, can you think of a single person who doesn't like October? "Oh, the start of all of those family rich bonding events?" "Aw gross, colorful leaves wistfully falling and painting the earth with their majestic beauty, no thank you!" "Oh, you have got to be kidding me! Look at all of these pumpkins bringing back joyful memories from my happiest moments in childhood! How horrible!"
Okay, you get it. October is very special to a lot of people for a lot of different reasons. For me, my list of why October is awesome just keeps growing. Since having Roman my list has grown to include Spina Bifida Awareness month.
Now, October is probably home to more causes to be aware of than any other month. But, I think it's important to be the voice for your cause, no matter the competition. So if I may, I would like to take this time to do what I do best; be the voice for mine!
In order to properly advocate for my cause I need to do one major thing: Make you aware! It's awareness month, remember? But this is tricky, because I want to make you aware without sounding repetitive. I mean, how long have I been harping on about Spina Bifida? It would seem that eventually the conversation would run dry and I would finally say, "So uhh what's new in your life?" And also, I need to not be boring. I know the facts, I've heard them from the start. I can quote the percentages, the dates and the demographics. I can easily tell you the sad stories and the happy ones. But, that's boring, and it's easy to find via the internet. I don't want this blog to stand as a carbon copy of percentages from other websites. I want this to be more. I want this to allow you to feel the hurt, sadness, loneliness and all of those other crappy feelings. Because after that you're going to feel the joy, the happiness, the pride and the other various feel good emotions. You can't have one without the other, that's not allowed. If you want the good, you have to at least try to feel the junk.


Every single time a friend or family member announces that they're pregnant, or announces that they would like to be pregnant, I chime in with my rant on folic acid. You know the rant. Folic Acid is not a signed promise that your baby will be born with a perfectly normal spine. But, taking Folic Acid is a good way to help prevent it. Wearing a seat belt doesn't promise that you will be totally unharmed in the event of an accident. But you wear it anyway, because hey, better safe than sorry.
Usually in these efforts I come off sounding like a Munchhausen mother or a really hip sympathy hog. I'm not searching for your "awws" and I'm not looking for you to rub my shoulder and give me a big, hearty hug. I mean, you can give me a hug, I'm not opposed to hugging. I quite like hugs actually. Anyway, If I come across as a fear monger or as a drama queen it's mostly because...well, I kind of am.
Spina Bifida is scary as hell! If I knew that I should have been afraid of it BEFORE I got pregnant I would have done so many things different. Or nothing, who knows. I'm not magic.
The point is, Spina Bifida usually happens before a woman even knows she is pregnant. This is why it is CRUCIAL for me and the people in my SB community to be fear mongers. It might not, and probably never will and it's very doubtful that it could ever happen to you. But, better safe than sorry, right?

In the interest of awareness, it's not my job to sugar coat it. It's my choice if I want to say, "Oh, we have our days. But all is super, thanks for asking!" or "Well, I'm not sure if we're dealing with just typical three year old angst or if I need to employ the services of a well trained psychologist." But Spina Bifida can really suck, so a lot of times, we sugar coat it.
Sometimes our kids can't pee. Sometimes they have severe kidney reflux. Sometimes they can't hold their poop. Sometimes their brain is forcing its way into their spinal column. Sometimes they cant walk, sometimes they can't eat, sometimes they can't breathe, sometimes they need surgery and then surgery and then surgery. Sometimes. They. Need. Surgery! Brain surgery, neck surgery, back surgery, leg surgery, hip surgery, bladder surgery and eye surgery. Sometimes they need braces, catheters, trachs, walkers, wheelchairs, breathing tubes, arm crutches, casts, canes and right sided ventriculoperitoneal shunts. Okay, yes I am tugging at your fear bone here. Some of these are more typical than others and some are just downright rare. But, if one person reads this and says, "WOW! I wasn't aware that Spina Bifida wreaked so much havoc!" Then POOF! My face will appear in the clouds giving a giant thumbs up and then another set of clouds will swoosh by and they will kind of look like they say, "Mission: Accomplished!"

That's the bad. You had to have it.
In the interest of awareness, it's my job to deliver a little taste of inspiration. When I see Roman terrorizing the aisles of Wal-Mart, that's not inspiring. That's a three year old disobeying his mother in the store, he just so happens to be in a wheelchair. He's not doing anything that he wouldn't be doing if he didn't have the chair. With or without Spina Bifida that kid would be hauling butt down the aisle with me shuffling after saying, "Roman! Knock it off! That's IT! I'm counting to THREE! Onnnneee.....Roman!....Roman!!....TWOOOOOOO....ROMAN. ABLE. POTTER!! DO NOT MAKE ME SAY THREE!!"
That's not to say he doesn't make my heart swell to unhealthy sizes. He does. All my kids do.
When Roman is feeling tired at PT and wants to stop messing around with his legs and just play, he knows he has two choices. He can throw a huge fit and beg to stop. He can say he's too tired and doesn't want to take one more step. And he has, he has asked that we stop because he simply can't continue any more. But there are even more days where he'll throw his fit, make a fuss and ask to stop. But, the inspiring part is when his PT says, "Roman, finish this and then we can rest." or, "Roman, take 12 more steps and then we can play." And instead of throwing a fit he pushes on. Even though his cheeks are red, even though he's got sweat running down the side of his face,  even though he's exhausted, even though he's worked his ass off. He finishes the job. To witness a three year old do that? That's inspiring.

I didn't ask to be one of the thousands of moms who are a voice for this cause. None of us did! If given the choice I would have been a voice to the "moms who have too many gold bars to carry all at once" cause or the "moms who can't wear mom jeans because their butts are just too plump and well sculpted" cause. You know, the important ones.
But, I am one of the voices, and most days I'm okay with it. Some days I want to cry and scream and change not my life, but Roman's. Some days, I want to find a religion that will let me spend the rest of my life just begging for a second chance. To make it go away. To find a "cure" for Roman's Spina Bifida. Sometimes I feel very, very, very sorry for myself. But when I feel like junk, I remember that I'm one of the voices and Roman is one of the faces. And we have a job to do. So, I hope that in reading this you felt sad but it ended on a happy note, because Spina Bifida REALLY does suck. But it's not a tragedy, it's not devastation. Yes, it's a life changer but it's not a life ender. Use our story to scare your friends, your family, yourself.
Don't be obsessed, and don't let it change your mind, and don't let it consume your pregnancy, and don't let it keep you up at night. Just take that little concern and put it in your pocket, or a fold of fat, or in your armpit, I don't care. Let it peek out for 5 seconds when you're thinking about starting a family, let it peek out when you're talking to a friend. That's really all that awareness is. A little concern that you share when it needs to be shared and then you tuck it away. Don't throw it away, just tuck it away.

Now, the great thing about Spina Bifida Month is that you'll get to read and see and hear from a lot of other SB moms, which is great because this isn't THE truth, it's just MY truth. I usually tend to err on the bitter and cynical side, so it's perfectly okay to disagree with me or even think that I'm a bit of a jerk. But just wear your seat belt.


  1. I <3 you. What a very well put take on awareness. And October. And one of these days, I will hug Roman Potter. IF he'll let me.

  2. I love your post! I'm doing a series for SB Awareness this month that gives the general overview alongside our son's story. I love that you share the good and the hard side as well with SB.

    (Oh, you can find the series here if you're curious: )

  3. This is a very awesome look into Spina Bifida. Good and bad. Pretty perfect. Thank you.

  4. My sweet Granddaughter is 26 days old, still in NICU, and her SB and Hydro make me want to preach Folic Acid! to every woman I see.
    I am usually focused on her abilities, especially when she does something she wasn't supposed to do, but I have felt a bit of sadness/frustration for her.
    Thank you for sharing your little sweetheart's story.