secretramblingsofapastorswife

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.  Defect. 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 ...

Spina Bifida is confusing. Its hard to grasp on to and understand.  I know lots of us have heard, " I had a friends cousins uncles best friend who had spina bifida and he walked great and you'd never know." And then... you can see stuff like this and think, okay I think I got it. I have broke the code...  and then....... But then you see a kid walking without crutches at the same level as a kid thats a full time wheelchair user. Why is this?  What's the deal? There are kids who had fetal surgery. There are kids who didnt. There are kids who have had tethered cord surgery, there are kids who are waiting it out. There are kids who have shunt surgery after shunt surgery and then their are teens with the same shunt they had since they were tiny.   We shout awareness and we play videos but then I think it gets a little hazy.  One kids dancing and jumping, another kids spinning in a chair, and another kid is running with crutches a...

Toby and I hear a lot..... "you are so strong." "such courage." "your faith is an inspiration." "we dont know how you do it." "You are so brave." "Wow." "You are such an example to me." And we appreciate it. Every word of it. but today in light of Spina Bifida Awareness month I want to take time to take the spot light off Toby for a moment. I do believe he is all of those things, but there are others in our lives that are those things and more. We know not every family has this. We know we are blessed beyond all we could imagine.  To my Friends You are so strong. You know that hanging out with me means baggage. You know it means helping me. You know it means work and you do it. You call me. You text me. You are there. You listen to my fears, you see my tears and even when there is nothing to say you are there. You can jump from having fun to hearing stories that ...

Today I was asked/told "I'm not sure I understand the purpose of posting this photo." along with asking about his schooling, what he can do and what he cant do in regards to the photo. and this is the photo in question.    Now usually im an oversharer. I share, share, share, type, type, type, photograph, photograph and photograph.   But this is something I've never shared. Nothing I've never done.   It just didn't seem like mine to share. My choice to show.  But with it being Spina Bifida Awareness Month and all...I asked him.  He's talked a lot about showing scars and sharing things with close friends. I thought he might be ready for it.  And he was. He didnt bat an eye at it.    It was a big moment for me, for us, for him.   And so when I clicked on facebook 700xs to see what the reaction would be to put something so "private" out there I was slightly shocked by the response of one.(e...

Its Spina Bifida Awareness month but I'm jumping to a totally different topic today.  Any idea where I'm going with this? Now this is a blog post that I want feedback on. I want to hear what you think.  So look at this as an open discussion. In almost any church in America you can see this.   And in and of itself none of these things are bad. As a matter of fact some of these products are pretty stinking awesome.  I've gotten a kitchen with some pampered chef, im typing with jamberry nails and Im wearing marykay makeup. I know you probably think I'm a hypocrite now. But I want you to understand that my problem is not with the product. 12  And Jesus entered the temple 2  and drove out all who sold and bought in the temple, and he overturned the tables of  f the money-changers and the seats of those who sold g pigeons.  13  He said to them,  “It is written,  h ‘My house shall be ...

Ive thought about what to write around this time. I've even sat down a few times to write and it just doesnt come. None of it seemed enough. Spina Bifida Awareness is important. Its super crazy important.  When we heard the words 'spina bifida' we had no idea what it was or what it meant. We had no idea what our future looked like. We had no idea of anything. We just knew it was bad, very very bad. We sat in an office hearing words that sounded like a foriegn language. Hydrocephalus. spina bifida myelomeningocele neurogenic bladder.   What the what?! We were young. We had a 8 month old (im guessing, im too tired to do the math) and we had no idea what what going on. It was like this Hurricane diagnosis had just swept into our life and screwed it all up with a bunch of words that had no meaning. We are 8 1/2 years out from those horrible hard first days. In that time Ive talked to a few moms that were pregnant with their babies. Sitting right where I was ...