Wednesday, October 5, 2011

Looking back...

It's October.
In addition to being the most awesomest month out there, (next to April, September, November, December and January) It also happens to be a very special time for the mother's like me. 

It's Spina Bifida Awareness Month!

This isn't like, "National Hug A Puppy Day" or "Red Thong Appreciation Day!" We take this thing very serious. To spread awareness and honor our children we're all doing something a little different. Some are featuring a new SB rockstar on their blog, others are raising money, selling candles or wearing ribbons. 
These are all very wonderful deeds. It is my opinion that if in any given day you educate even ONE person about SB, then you kick butt. 
We're a week into October and I've done nothing to educate, raise money or raise awareness. I started thinking about what I could do, which in turn made me think about our journey, which in turn reminded me of a story. 
I'm going to share that story with you. 

When Roman was only a few months old, he had a very serious heart condition that needed surgery. While in the E.R one night a nurse said to me, "It's not easy being a special needs mom." I looked at her. I was too tired to find the right words. "What's wrong with your kid?" is never an okay thing to say. So, I gave her the, "don't make me ask what's wrong with your kid" look. "My daughter has Downs Syndrome." 

As horrible as it sounds, I was so tired and so upset and so kicked in the face with self loathing that I actually thought, "Here comes the part where we congratulate each other on how awesome and superior we are." I didn't want to have the conversation where we discuss how hard it was, and how much we've overcome. I wanted her to get his stats and get out. 
I'm so thankful that she didn't pick up any twinges of anger or annoyance in my tone. I'm thankful that it was dark enough that she didn't see the total lack of interest in my eyes. I'm thankful she was an over-sharer, because somehow she knew I needed to hear this. 
She told me how she had broke down to her friend one day, asking how will her daughter ever do the fun things in go to prom? Her friend simply told her that her daughters dreams aren't the same as hers. She said "You're worried she won't be able to go to prom, when really that might not even be important to her at all.  She might get the same excitement over a new doll." 
The nurse did good. She hooked me. She said, "To you, walking is all that's on your mind. But for him, he might not even care. He might just want to play." 

We talked some more about how right she was and how amazing we are, we went on to discuss how hard the NICU was and how we really are quite amazing. :)

As she was leaving she said, "It's not his legs that will take him to Harvard." 

That one statement has stayed with me for so long. I think I became so comfortable with the idea that it became less of a nice thing to say, and more of a challenge. I'll see your profound statement and raise you one  Harvard grad. Wheelchair or not. 

At the risk of writing a book, it IS SB Awareness month, which means I have absolutely no choice but to talk about SB in a more medical way. Apparently there is more to it then just saying, "Spina Bifida sucks, now you know." So let's cover some of the basics, and if you have any questions you can e-mail me or Google. But, whatever you do-don't Google. 

Things I copy/pasted: 

What is Spina Bifida?
Spina Bifida literally means “split spine.” Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Spina Bifida is the most common birth defect that disables people for life. Every day, about eight babies born in the
United States have Spina Bifida or a similar birth defect of the brain and spine. 

What causes Spina Bifida?

No one knows for sure. Scientists believe that genetic and environmental factors act together to cause the condition.

How is Spina Bifida Treated?
A child with meningomyelocele usually is operated on within two to three days of birth. This prevents infections and helps save the spinal cord from more damage.

A child with meningocele usually has it treated with surgery, and more often than not, the child is not paralyzed. Most children with this condition grow up fine, but they should be checked by a doctor because they could have other serious problems, too.
A child with OSD should see a surgeon. Most experts think that surgery is needed early to keep nerves and the brain from becoming more damaged as the child grows.
Spina Bifida occulta does not need to be treated. 

What Can You Do to Prevent Spina Bifida?

Women who are old enough to have babies should take folic acid before and during the first three months of pregnancy. Because half of the pregnancies in the United States are unplanned, the Spina Bifida Association asks women to take a vitamin with 400 mcg (0.4 mg) of folic acid each day during the years of their lives when they are possibly able to have children. Women who have a child or sibling with Spina Bifida, have had an affected pregnancy or have Spina Bifida themselves should take 4000 mcg (4.0 mg) of folic acid for one to three months before and during the first three months of pregnancy. 

Educating from the couch, 
Mrs. Potter. 

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