October 12, 2011

The awareness project - A letter to the Editor

One of my good friends Colleen, came up with a great idea to draft a simple letter about Spina Bifida to help spread awareness and make it available to anyone who was interested in submitting it to their local paper.  The Spina Bifida community is very proud and feels strongly about getting the word out about our wonderful children.  I loved her idea for several reasons - one being that it wasn't too time consuming.  I love to come up with great plans or ideas for things I want to do, but unfortunately executing them seems to be a bit harder for me.  There just doesn't seem to be enough hours in the day to do all that I want to do.  But thankfully this was a super easy one.  So last night when I was supposed to be sleeping I submitted my "Letter to the Editor" to eight local newspapers.  I'm really hoping to get at least half printed.  It's a short letter (see below) since most papers require it to be under 300 words but the idea is to get people talking about Spina Bifida.  Talking about what it is and what it isn't.

To the Editor:

October is Spina Bifida Awareness Month. Spina Bifida is the most common permanently disabling birth defect, affecting about one out of every 1,000 newborns in the United States.

What is Spina Bifida? It's a birth defect that results in the spinal cord protruding from a baby's back. The back can be surgically closed before or after birth, but damage to the spinal cord can cause paralysis, hydrocephalus (fluid on the brain), bowel and bladder issues, and other challenges.

What causes it, and how can it be prevented? No one knows what causes Spina Bifida, but women can reduce their risk by up to 70 percent by taking 400mcg of folic acid daily for three months prior to conception. Every woman of childbearing age should take a daily multivitamin.

What are people with Spina Bifida like? There is a wide range of outcomes. Some are barely affected, some are severely disabled, and most fall somewhere in between. Some use wheelchairs; others use braces, crutches, or walkers; and some walk independently. Most have normal intelligence. Spina Bifida is only one part of them and does not define them. They can become teachers, doctors, musicians, athletes, or anything they want to be.

What do you do when you see someone with a disability? Instead of looking away, make eye contact and smile. Instead of shushing children who ask questions about a wheelchair or other differences, encourage children to ask the person about it, or answer with: "Some people's legs don't work the same as yours, so they need help to get around." Emphasize people with disabilities are more like everyone else than they are different.

If you would like to learn more about Spina Bifida, visit www.spinabifidaassociation.org.

Nicole Summers

If only the Dr.'s could give a picture of Annabelle (or any of our many, many SB buddies) when giving parents the diagnosis of Spina Bifida for their unborn child.  It really would make the rest of their pregnancy so much easier.  I am truly a very lucky lady to have Annabelle as my daughter.  I'm not just saying that - it's really true.  My life is good and it is so much better because Annabelle is in it.  Just look at her sweet face. 

I am inspired by her strength and determination on a daily basis
I read this today on my good friend Joanna's Facebook page and I thought it was perfectly worded so I had to share it.  Love you Joanna!

"SPINA BIFIDA AWARENESS : You should be aware that having a child with SB may cause increased motivation to help others, a new found perspective in times of trial, a desire to enjoy the little things and commitment to change the way the world defines "disability".

Studies show that raising a child with SB will induce strong feelings of gratitude for even the simplest of milestones and produce a willingness to do anything, talk to anyone, try any method necessary to make life better for your child.

Side effects include feelings of worry, fear, uncertainty, and anger but are tempered with love, faith, determination and hope.

Having a child with Spina Bifida is not easy...but loving one is". ♥

Annabelle is VERY loved!


  1. Nicole, I love this. The paragraph about what you should do when you meet someone with a disablitly is wonderful.
    I love the pictures and what you shared about Annabelle.
    And what your friend wrote is wonderful too.
    Thanks so much for sharing.
    Love from,

  2. Great topic.
    Great post.
    Great writing.
    Adorable pictures!

  3. So well said, all of it!!

    Hope you're doing alright. xo