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!

October 8, 2011

Helping to spread awareness

Last week I was asked by two friends to submit a little something about Annabelle for their blogs.  They are both spotlighting children with Spina Bifida on their blogs as a way of spreading awareness during October, which is Spina Bifida Awareness month.

Cassie asked that we submit a picture and a little blurb about what we wish we knew "then", back when we were pregnant and so worried that we know now.  I used this picture from Annabelle's 2nd birthday since it's currently my favorite of her. 

I wrote the following: "As a mother I knew deep down that regardless of her challenges she would be a wonderful addition to our family. What I didn't know then was how amazingly happy she was going to be. She is truly a happy, loving little girl. Her smile and laugh are infectious. She has a genuine love for life. She doesn't focus on what she can't do but on what she can. She has brought more joy and happiness into our lives than I can put into words."  I could have written so much more but decided to keep it short.

If you haven't had the opportunity to check out Cassie's blog and all of the other amazing children please do.  These beautiful children and their families are so inspiring. 

Karen wanted a silly a picture of Annabelle and for me to describe her in just three words.

Here's the picture and words I came up with.  It was hard to narrow it down but I do like what I chose.


Please take a peek at Karen's blog to see all the adorable children she is profiling as well as the in depth descriptions about what Spina Bifida is and is NOT.  She's got some great information there.

October 2, 2011

Spina Bifida - what it is

In keeping up with Spina Bifida Awareness Month I wanted to provide a little background on what Spina Bifida is for those that aren't yet aware.

Spina bifida is the most frequently occurring permanently disabling birth defect and the most common Neural Tube Defect. It affects approximately one out of every 1,000 newborns in the United States.
Spina bifida results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.
Because of the paralysis resulting from the damage to the spinal cord, people born with spina bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with spina bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with spina bifida live well into adulthood as a result of today's sophisticated medical techniques.
Although Annabelle's spina bifida makes some aspects of her life a little different than others these things just become her normal. As you can see she really is just like the rest of our silly family but with some "extras".

*picture taken 8-21-2011

October 1, 2011


October is Spina Bifida Awareness month.

I think everyone affected by SB has their own thoughts on what "awareness" is and how best to get the word out about Spina Bifida. I hope to share some of my thoughts on loving and living with someone who has Spina Bifida over the course of the month.

Sadly, I am very aware that I haven't blogged in over a month but I wanted to start the month off right. So for today it will be short and sweet just like our Annabelle.

Just in case you weren't AWARE I love this girl with all my heart.

Just in case you weren't AWARE she has two of the proudest big brothers who would do anything for her - no joke, she is their princess.

When you or a family member has Spina Bifida it makes you keenly AWARE of and also appreciate what matters most in your life.

We are AWARE how blessed we are!