Thursday, October 30, 2014

the word I hate hate hate and ending spina bifida awareness month

Ive been silent the last couple weeks on the Spina Bifida awareness. But thats cause Spina Bifda took up my last few weeks.  Its life. Surgery and Healing trumps blogging any day.

But I knew I wanted to do one more post. That I had one on my heart and that I wanted to end Spina Bifida Awareness month with it.

I've written about it Here before and have talked openly about my own personal struggle multiple times.

When people describe Spina Bifida. When they talk about it. When you hear about it. When the conversation comes up there is a word that ALWAYS, ALWAYS ALWAYS comes up with it.

I hate the word.

Its awful.  

It makes my stomach sink

It makes me feel ill.

When someone uses the word around Toby I want to pop their mouth. With a chair. 


I wish I could take that word out of the dictionary.

I have a strong dislike for it. (if you couldnt tell)

So whenever anyone throws that word around. (which i get the technicality of it, but we arent talkign technical we are doing mommy talk) it makes my insides feel they just got squeezed and spit out.

Here is the definition for it.

This is what what is used to describe my son. Before we heard spina bifida we heard the words birth defect.    

For a while I never really addressed this. Never sat and analyzed it. But it hit me. Defect means somethings wrong. Something went wrong. inadequacy, shortcoming, deficiency, imperfection.  For years I struggled with that thought. For seeing Spina Bifida that way. 

The word defect can give the thought of God missing something. All these other babies came out great and perfect and exactly right. Healthy. But oh....this one...this one slipped through the cracks and is now defective.  Defect gives the idea of losing importance or of losing its worth. Of God missing an opportunity to do what He was supposed to do.

is this the way we view disabilities?

But let me tell you. After years of struggling. After years of fighting guilt and uncertainty. 5 years ago this month God set me straight. 
God didnt miss something. God wasnt unaware. It wasnt something I did or didnt do. There wasnt something with my body and they way my body provided for my babies. 

5 years ago I wrote a post called, "The fingerprint"  of course I cant figure out how to find the link so I'm going to post a little section of it.  I wrote about sitting in Nates teaching to the teens as he hit on disability. He spoke of all the familiar feel good verses. 

He spoke on being knitted together. When God was forming Toby. When Toby was growing in my womb was Gods back turned? Does somehow the verse of being knit together not apply to Toby? Or does it even more so?

Nate described it this way, (I'm taking this segment out of his book Be Confident in Your Creation)

"Did you realize that you are the work of the only true God? The One God who formed and created all heaven and earth and the same God who only has power to rule all creation is the same God who took the time and care to mold you as a potter molds the clay! This fact should make you jump out of your seat and praise God for your creation. You are the possession of the King of Kings and Lord of Lords. Perhaps some perspective will help you wrap your brain around your personal value. The price of a well-made quality guitar can range anywhere from $250.00 to $1,000.00. Now you take that same guitar and have a big name country music star sign the guitar all of a sudden, the value of that guitar skyrockets. The personal signature of an important person adds to the value of the object. You have the signature of God in your life. If the signature of a country music star can add to the value of a guitar, how much more would you say the signature of God adds to your value? You are priceless because God created your personally and left His fingerprint of expression."

This is now have I view Toby now! Spina Bifida isnt a defect. Its not a mistake God made. Spina Bifida is God putting his signature of Toby's life, on all of our lives. He allowed Toby to be formed this way. He wasnt unaware. This was His purpose and His plan.  

So when I hear the word defect to describe Spina Bifida its like nails on a chalk board. Toby is not defective. His worth isnt diminished. His value hasnt changed. If anything God took special care to put a special touch on Tobys life. Toby has God's fingerprint right there on his back.

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