"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family."
" Faith makes life possible. Hope makes life workable. Love makes life beautiful."

The Winwards

The Winwards

Monday, October 20, 2014

Spina Bifida Awareness entries 11-20

Spina Bifida Awareness Day #11

Spina Bifida brings out strengths and attributes in yourself and your child that you didn't know either of you possessed. Spina Bifida has also taught us that we are stronger, and have the strength to do what is needed.

Spina Bifida Awareness Day #12 - Each year approximately 1500 babies are born with Spina Bifida!! My son, Tanner was one of those 1500 born in the year 2008. Spina Bifida is one of the most common debilitating birth defects, yet no one really knows what it is. To me, that is sad. Spina Bifida needs more awareness! More knowledge, and less ignorance.

Tanner says "Spina Bifida is wheelie awesome! Get the word out"

Spina Bifida Awareness Day #13
A 2012 synthesis of 17 international studies estimated that once prenatal diagnosis is made, spina bifida has an abortion rate of 63 percent. AN ABORTION RATE OF 63%! This includes late term abortions.
We learned of the possibility of a spina bifida diagnosis at my 5 month (22 weeks) ultrasound. We visited the high-risk doctor for confirmation at 24 weeks and were given the option to terminate, and told "Your baby boy has Spina Bifida, he will have no quality of life, when would you like to abort?" Abort my sweet, courageous, loving, awesome Tanner? NO WAY! We chose LIFE, left and never went back. I still avoid driving past that Dr's office.
An estimated 166,000 individuals with Spina Bifida live in the United States, most of which are adults. This is likely due to advancements in prenatal testing which give parents the option to terminate the pregnancy. To the end the LIFE of a very living human being just because they are a little “broken.” To me that is the most selfish, sad and cruel thing imaginable!!

Spina Bifida Awareness Day #14
Even people born with Spina Bifida can do and do amazing things! As Aaron Fotheringham "Wheelz" would say "You are only as disabled as you think you are"
Practice makes perfect.  Try, try, and do it until you can.  What a great role model for my son!!

Spina Bifida Awareness Day #15
It's not hard to love someone with Spina Bifida 

Spina Bifida Awareness Day #16
Going out with Tanner, we get looks, stares, odd comments, and ignorance. Sometimes we are lucky and get a parent who lets or encourages their child to ask questions. 
One time when we are at Costco, a child came up and asked questions. Followed by his mother saying "I hope its ok that he is asking. I try really hard to teach my kids that everyone is important, no matter how they look, or what their abilities are." 
That mom made me cry that day, but in a good way. And she got a hug. Such a breath of fresh air! 
Please, please, please teach your kids that children like my Tanner are not scary, that they are important just like everyone else. And that wheelchairs give kids like Tanner more freedom. To Tanner his chair is FUN.

Spina Bifida Awareness Day #17 
Spina Bifida doesn't stop anyone from achieving goals, reaching for the stars, and doing great things! 
Tanner received 2 awards today. Perfect Attendance and the Scholar Honor Roll Award (the hardest award to obtain at his school, and he was the only one to get it in the whole kindergarten) There are 5 classes.  
This year has been a hard transition for him, but he is rising above, and I am so proud of him!

To get the award he had to achieve the following - 100% attendance - less than 2 or less tardy's - Exceeds Standards on report card average - Leadership in the classroom or for the school (Paideia Academy)

Spina Bifida Awareness Day #18
Spina Bifida is labeled a lot of things. But it is also these things!

Spina Bifida Awareness Day #19
A neurological complication associated with Spina Bifida is Arnold Chiari II malformation—a condition common in children with myelomeningocele (the type of SB Tanner was born with) —in which the brain stem and the cerebellum (hind brain) protrude downward into the spinal canal or neck area. This condition can lead to compression of the spinal cord and cause a variety of symptoms including difficulties with feeding, swallowing, and breathing control; choking; and changes in upper arm function (stiffness, weakness). We have been blessed that Tanner only has a mild form of Chiari, and that the only effect its had on him so far is a sensitive gag reflex.
A lot of children with SB aren't so fortunate and some have feeding tubes, trachs and other complications.

Spina Bifida Awareness Day #20
How we react to questions, looks, and ignorance shows our SB kids how to react. I try really hard on a daily basis to treat others with kindness too.

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