secretramblingsofapastorswife

Its been a while since I've written because, well, who has time for that anymore. But then this showed up in my insta feed. And I was like...."WHAAAAAAT!??? Finnick Odair in a wheelchair!??? This might be the best movie yet. I watched the trailer and thought. "AMAZE! What is this beautiful story about.?" And then I googled. CURSE YOU GOOGLE. I went ahead and read the whole premise. Spoiler and all. If you haven't read the book and don't want it spoiled go ahead and stop reading. Ive had friends ask me to go see the movie with them...because....well....Finnick. And honestly if I hadn't googled I would have been perfectly happy to see it. But I did. And honestly, I truly try not to be offended by everything wheelchair related and such. I try not to be hyper sensitive and over zealous and post all the posts and stuff. But tonight I read an article that perfectly explained all my thoughts after I read what I did. When I first ...

You might have noticed that my page has changed. This blog used to be called "raising toby." My Facebook page used to be called, "Pray for Toby." And now all that has changed. You see as Toby grows I start to lose some of what I felt was my story to share. As Toby gets older my voice that has told the story becomes his voice that tells the story. It's no longer my story to share. I am part of the first generation of "blogging parents."  I'm still figuring this whole thing out in the age of social media galore and ways to pour your heart out and honestly I haven't figured it out yet. I don't want to look back in 10 years and have to apologize for what I put up. So what I'm doing is leaning towards caution. Leaning towards quiet and leaning towards respect. One day Toby will be preteen Toby. One day Toby will be teen Toby and one day Toby will be man Toby. Will all those Tobys want me sharing his story for all to see? I don't kn...

When you feel like someone/something wrecked your life. There are times in my life when I've felt like its been wrecked. (when what I think should be the path gets derailed or changed or straight up messed with.) There are moments when I've handled it with grace and with all the correct words, phrases and verses we love to use. There are moments when I've handled it with a straight up junky attitude. There are moments when I'm somewhere in between. Ever since the Lego movie has been out and I've heard it (in my mini van) 1737 times there is a quote that gets stuck in my head. It's when President Business says, "YOU WRECKED IT!" And that's sometimes how I feel. I felt like my life was on a specific path when God wrecked my life, my plans and the direction my family was going in. The problem is sometimes the wrecking doesn't feel like God. Sometimes it feels like specific individuals and/or events that make choices that affect your family....

I'm sitting here on the night before my anniversary just reflecting and mentally looking back at the past 12 years. This isn't written pretty and I'm typing on my tablet so just go with it. We've had an awesome 12 years together and I've laughed till I've cried and I've just plain cried. We've done big things like Disney for our honeymoon and small things like walking around Target looking into the awful magnification mirrors in the beauty section. (don't do that its awful) We went to college together and took Greek together while being married. Ẃe worked at GAP together and you were my boss for a little while. We started helping in a church plant in the youth together.  So many things that were such a big part of our lives and part of what has shaped us to be who ẃe are. I'll never forget making a bologna sandwich for you and having no idea that I needed to take the red part off. That first year when you ate all my burnt food except the bu...

So I had quite a few friends share this story and I've seen praise after praise for this woman.  And I get it. I really really get it.  I do.   But Holy Moly that story rubbed me the wrong way! If you don't want to read the story Ill give you my general run down. First of all Morgan (the woman the story is about) posted the story on her own facebook page. Rubbing me wrong right here.  Its one thing to do something like this and have someone "catch" you in the act, its quite another to share a long emotionally driven post about it. Secondly, can we just stop and say What the what??!! The man refused and she pushed his wheelchair anyways!!!  Let us all bow down and call you hero. Let us place flowers on your head and share your story in as many emotional ways as possible. You are amazing!   I just cant. When I read that all I could picture was Toby. Toby when he refuses help and someone wont listen to him. Toby when all he wants to do is be the one ...

If there is ONE thing the combo of ministry and special needs has taught me its to ask this question. What if the tables were turned? There is just so much benefit to asking that question! There is so much GRACE when life is viewed through that question! There is less judgement, more thought, less fighting and more understanding, less hurt feelings and more compassion. When my feelings get hurt... When I get frustrated about something...When I think someone handled something poorly....If I can just stinking remember to ask myself.... What if? What if I were the friend with the abled body kids? Would it be hard for me to always go to their house because I knew it was easier on them? Would it be hard to know that every outing with them was so much more work then an outing with another friend? Would it be worth it to me to try to offer encouragement and possibly offend? Would I want my kids to sit on the sidelines to play instead of getting their energy out at the park? W...

So All I wanted in life was to look like Whippy Cake....okay well Becky from whippy cake. shes gorgeous. she has awesome hair... truly awesome. always. I dont think the chick knows what a bad hair day is. for real. follow her on instagram. she is awesome. So finally after having long hair for the first time ever. I chopped it off. CHOP CHOP CHOP.  and it was horrible. I avoided any and all camera for the first 6 weeks.  It finally started to grow. This post is just a fun little documentation of growing out a pixie cut. because really its a challenge and it took some doing and really im not even all the way to the its officially grown out stage. So first there was this. Granted this was after at least 6 weeks of grow out. (you can just imagine how short it was) Try the pin the bangs back and go for smooth without looking like a boy. Earrings and extra makeup were a must. Then there was rocker chick USA. It was getting too long to smooth without lo...

It took me a while to even know what those letters meant. I'm pretty sure I googled it if I remember correctly or asked a friend that is way more "with it" than I am. I've seen people squawk on FACEBOOK about how people try to make their lives seem better than they are...or the opposite, how people like to only complain on FACEBOOK.  Its always one extreme or another.....So just in case I fall into one of these categories here's my TBH 1. To be honest I lose things all time. Like ALL THE TIME. Really really important things like keys and wallets and debit cards and brand new mascara I just bought. (the last which made me feel the most crazy) I know its something that can be solved. I know its a completely childish thing and makes me feel and seem like a mess. But I seriously CAN NOT get it together. Bless my husband and his reordering of debit cards. 2. To be honest I angle my pictures so you cant see the crumbs, toys, laundry, spilled sippy cup and lar...

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...