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 ...

Dear Shunt, I hate you! Hate you. Hate you. Hate you. But for real. I hate you. I hate you because you put fear in me like I've never felt before. Every headache, every puke, every virus that hits my son makes me shake in fear because I think its you.My mind immediately jumps to you.  I think this is the moment, the moment you have failed us. Every day of exhaustion. Every bad therapy day. Every off day for my son, my mind goes to you. I hate you for that.  I hate you for all the false alarms. All the CT scans that seemed unnecessary. All the ER visits and sleepless nights that weren't needed. I hate you for real.   I hate you for the moments you've stolen from my family. I hate you for the fun things you've messed up.  I hate you because tomorrow you will be replaced. Because today we found out that you really did fail us. Today the fears, the CTs, the pukes, the headaches, the shaking eyes all came together and this was the moment I feared the most. An...

Ministry looks so so different from what I thought it would. For one it hurt a lot more. For two I seemed to be doing a lot less of it than I thought. As a 16 year old newly converted atheist to Jesus follower I was ready to serve Him and serve Him forever and ever. My dream was youth ministry, a Pastors family. I went on missions trip after missions trip. Visitations, activities, worked at a Christian Camp 2 summers. Met my husband there (who was studying to get his degree in Bible). I was in school studying to help churches, work hard and give everything I got to whatever church God brought us to. And God did. He brought us to Texas but before that He allowed some things to take place.... Grace. We were right before our 1 year anniversary or right after (i can never remember this type of stuff) when I found out that I was pregnant with Grace. I was so close to getting my degree but I knew that my plans had changed from the moment I looked at those pink lines. We had...

 Recently Ive seen post after post after post about things that offend people, hurt people, bother people. And granted there are some good ones and worthy ones to be upset about. We all know about the Kanye West mess. It was ridiculous and idiotic of him and honestly if for some crazy reason (heaven help me) that was Toby sitting there at his concert I would have flipped my lid for my child to be pointed out and put on the spot, humiliated and otherwise.  and really doesn't he just look like a total jerk. I originally had mixed emotions about the whole thing when I first started watching all the shares and posts popping up.  At first horrified and then just irritated that there was ONE MORE THING that I had to get all witchy about. Was it just a harmless mistake that was turned into a big deal by the lovely media.  But then as I thought on it more it really was a big deal. It really was offensive and wrong.  Andrew Morrison-Gurza    had a fanta...

Im tired. Exhausted. Burnt out and done in. Special needs his hard. Its hard hard stuff. Its exhausting and relentless. and sometimes ive had enough. I know there are moms out there that feel the same way Im feeling today. I'm worn out of special needs....but not because of my child.... Because of you. You. Insurance company that denies whatever they want whenever they want without seeing the whole picture.  Who seems to think they should decipher what can help my son and what is not medially necessary. You. Medical Supplier that can NEVER EVER seem to get our order right. Always something missing or wrong. You, who doesnt look at my child as a child who depends on you to get it right. You, who seems him as a name on a paper....if even that, maybe just a number. You. Doctor who just tells me to ignore things. They arent a big deal, but never bother to explain what is going on.  Who only wants to make decisions based on what will keep law suits at bay. You. Hospi...

I stink at hard.... like really. If one more person tells me I'm inspiring, strong or the best mom they know i might just throw a brick at them. (thats a little dramatic and btw I know you all mean well and it is incredibly heartfelt.) It can just sometimes seem like huge shoes to fill and a burden to bear.  This month has been hard. hard hard hard hard hard.  Like cant describe it hard. Like cant even wrap my own mind around it nonetheless share that hard with you. The reason I share this even now is because I again (I know I say it 100xs) I think there is beauty in honesty. There is beauty in the fact that we are not alone in our struggles and if no one is ever willing to share those struggles.....well then.... we will all feel very alone now wont we.  These past weeks have been dark. Theyve been scary. Theyve been exhausting and overwhelming. And Id love to tell you that all around me I felt Gods grace, His mercy, His love and His strength. I would love to ...

Wanted to take a few moments to update and clarify. 1. The reason we havent given the names of the surgery and been a little vague is that Toby is almost 8 and we know that he needs to start having some rights to privacy. This is a more sensitive surgery and have decided that even though we are asking prayers and giving some detail that we want it to be his choice if he wants people to know exactly what was done. Also, its just plain confusing. Its 7 surgeries done at once....hard to explain. 2. Toby has a vp shunt. Tobys shunt saves tobys life .Keeps him Toby. It is in his brain but drains down into his stomach.   3. So when his fever spiked, and we found a pocket of fluid with signs of infection the doctors first goal was to protect his shunt tubing and act fast. It looked like one of those worst case scenarios fast. Crazy amounts of antibiotics and a drain later and we are in the clear.  It did have bacteria and everything else is being run through labs but we know tha...

Ugly isnt pretty. Which is why when you take a selfie its always one in which you consider yourself "looking pretty." Its why tagged pictures become untagged pictures quite quickly.The problem is both our truths. That selfie, hey we looked pretty (and we did) that tagged picture....well that day we looked....we will just say not so pretty...but they are both truths. we looked both ways. Its why we clean up our house from top to bottom right before a friend comes over. Its why we wear makeup, do our hair, pin 100 pins of different haircuts..... cause ugly just aint pretty.  Sometimes special needs world is so two sided. Like crazy bipolar two-sided. Like jump the grand canyon in 60 seconds two sided.  We like to blog the pretty side. The my kids a hero. My kid works hard. My kid is amazing. Look at what my kid did side. Cause well the ugly isnt pretty and who wants to show the ugly side when the pretty is just so doggone pretty. I'm gonna step way out of my comfor...

What a day. .... .AGAIN.  So thankful for this outlet to share our  lives and to have a way to just breathe through it all. Im sitting here listening to my husband listen to "Jesus Bring the Rain." as I type my mess.  I guess we all deal different ways.   So if you arent "friends" with me on facebook here's a brief recap. Toby has a large bump on his vp shunt tubing for 11 days (a shunt tubing that keeps him alive and keeps him Toby) yesterday he started complaining of headaches and then puked.  Now some of you will be like...hey no biggie, sickness goes around...but all you SB mamas will groan with me and say, "oh man."  He felt somewhat better as the day went on so we just went with it. This morning hes struggling more with the headache and even got back in bed. (not the norm for a 7 year old boy) So my poor husband takes however many kids to a field trip with the Christian School and comes home to take over 4 other kiddos while I ta...