Spina Bifida Awareness Month

This month must be the Month for Awareness! Breast Cancer, Health, Spina Bifida... Well I've been wanting to do something or write something about Spina Bifida and haven't come up with anything brilliant or anything I think would help with awareness. What ever that means, awareness. Do I want people to just know that I have a cute, precious baby with Spina Bifida or do I want them to know about what it is or how to prevent it or what???

I came across this blog post that I'm going to put here that puts into words what I feel should be what Awareness should be. two things. #1 women of child bearing years should be taking a folic acid all the time, not just when trying for a baby, most births are unplanned anyway, and #2 That if you are one of the 1 in 1000 that happen to find out you are going to have a baby with Spina Bifida that when the Doctor gives you the choice of termination, that you will laugh and say why would I do such a thing to a child that is going to knock your socks off with the things he's going to do to beat 'your' odds! Charlotte is perfect, yeah so what if I have to cath her 5 times a day and I have to make sure her head doesn't start to swell or that she's not as strong as the average 5 month old but she can smile and laugh and likes it when her sister plays with her. She brings such a joy into our family I wouldn't want it any other way. I gave her all I could to make sure she could have the best quality of life and now I'm doing all I can to keep up with that! I really believe she will lack for nothing in regards to happiness and a FULL LIFE!

This post came from Choo Choo's and Tutu's, Nate the greats mom! For the full post with pictures click HERE

For the last week, I've been thinking I need to write something about October being Spina Bifida Awareness Month, but I've just been mulling this around in my head. I'm always asking myself and others "What's the point?" What is the goal of this SBAK class we're doing? What do we want to accomplish with this mailing? What outcomes do we want to see from this event? And that's what I've been struggling with: What's the point of Spina Bifida Awareness month?I've never completely understood awareness ribbons. Breast cancer awareness--Who is NOT aware that breast cancer exists now? What's the real purpose? To me, it seems the purpose is to make us women aware that we need to do self breast exams and get checked out by our docs from time to time. Okay, that's a worthy goal, but is that the clear message we hear this month? And Autism ... well, the awareness campaigns have been pretty successful, I guess. Every time I see one of those puzzle clings on someone's car, I see another person affected. But again, what is the point of this awareness?

Every now and then I see a Spina Bifida Awareness ribbon or car cling, and I've actually never been a fan. To me, that just says, "Hey! Look at me! My kid has Spina Bifida!" So? Is that what I want everyone who passes my car to know about me and my kid? How does that help anything? (To be fair, probably the only reason I don't have one of those ribbons on my car is because they're not easy to find. I wouldn't go online looking for one to order, but if someone was selling them in front of me, I'm sure I'd buy one.) I have bought a bracelet that says "Spina Bifida Awareness--Hope." And I've just bought some awesome T-shirts that say "Redefining Spina Bifida." Those are clearer messages to me. (Okay, it's totally becoming apparent that I was a communications major.)So tonight I finally sorted it out in my head. For me, there are two great things that can come from Spina Bifida Awareness Month. For others there might be other goals, such as advocacy for their children.

But these are the two that stand out to me:1. To make all women of childbearing age *aware* that they need to be taking their vitamins BEFORE getting pregnant. And since about half of all pregnancies are unplanned (60% in Kentucky, fyi), that means all of us should be taking a multivitamin or prenatal to help prevent birth defects by up to 70%. (Preaching to myself here too.) Some people say they eat a healthy diet, so that's good enough. Uh-uh. Did you know you'd have to eat 14 cups of broccoli, or drink 8 cups of orange juice, or eat 200 medium red apples EVERY DAY to get enough folic acid? Honey, just take the pill and get it over with.I'm going to be honest, I know this is an important goal simply because most people really are unaware, but this has never been my fire. I do work health fairs and explain all this to women, but it's sort of beside the point for me. And I know it's because I was taking 1mg of folic acid 4 months prior to getting pregnant, and it still happened. I also know it happened for a reason.

2. The other goal I see as important for SB Awareness Month is to let women know that if they find out their unborn baby has Spina Bifida, there is no reason to terminate that pregnancy. This is my fire.I totally understand that overwhelming fear, because I was there too. I also wished the "problem" would just go away. I also got bad news ... The most severe form of Spina Bifida. L2--higher than average. Arnold Chiari Malformation and hydrocephalus. It was terrifying. I chose to trust God. I knew He doesn't make mistakes, and if He gave this child to me, He was going to help me raise him. And I don't want to sound like a crazy person, but He told me so. I heard Him. Not audibly, but very clearly.And this is what I got:

A handsome! ...

silly ...

train-loving ...

outgoing ...

stubborn ...

Did I mention train-loving? He really, really loves trains ...

brave ...

HAPPY! ...

running! ...

fun-loving ...

Daddy's boy ...

totally adored ...

musically gifted (That's right, I said it! He's gifted!) ...

hard-working ...

Superman!
Does that look like a boy who has a poor quality of life to you? Does he look sad, or sick, or disabled?
Some might say, "Well, sure, but he's an exception." No, not really. It's true--Nate does not have a whole lot of medical issues. I know some kids who have fewer issues than Nate, and some who have more. But you know what? I think all of us think our kid is the exception. We all consider our kids miracles, and they ARE because we gave them the chance to be. Not because we're any braver or stronger or more patient or better parents than anyone else, but only by the grace of God.


Another superwomen of a mom of the cutest little boy is doing an awesome awareness feature on her blog. She is featuring a different kid with Spina Bifida each day of the month. And she got such good feed back she's now featuring two kids a month. Charlotte was featured on October 9th. Please please check out her blog http://themclellands.blogspot.com/ and see all these precious kids all thriving and living life to the fullest, and knocking the socks off of all their doctors! Here's the link for just Charlotte . You'll get sucked in with finding more about all these wonderful kids. I sure do. I have to limit my time with each one!