Tuesday, September 23, 2014

Dear Shunt

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. And here it is. So guess what, I hate you.

And yet I love you. Because you've been with us 7 1/2 years.  The first one like you didn't even last 7 1/2 months and so therefore I love you.  You stayed steady and strong. You did your job. You protected my sons life. You protected his brain. You protected who he really is. So I love you.   

But yet I still hate you.  because you have threatened to fail and today you did.

I hate that because of you we will be separated by a hospital again as a family. I hate you because we will miss days of school. I hate you because his hair that JUST grew back will be shaved. I hate you for the moments of playing and hanging out with friends that he will miss. I hate you for the IV and the pain that he will have.  I hate you for the scar you will leave behind. I hate you for the fear of infection that we will have for weeks after this surgery. 

and yet I still love you because I know without you we might not have him and that is enough to make all the hate worth it....

and yet I still super hate you. 

Yours Truly,

His Mom 

ps  if you dont know what a shunt is you can read more about it here. 

Saturday, September 20, 2014

when your ministry doesnt look like ministry

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 Gracie and I began the most important job ever of being a mommy. (btw shes been worth it and Id give up a degree all over again for her)

15 months later Toby came. and again my plans were changed forever. Nate was in the process of earning his Masters Degree but with Toby's needs we knew it was now or never. At one point we were told that we needed to rethink serving full time in a church all together. That Toby's birth would make it hard. That I wouldn't be able to lean on my husband. That Id have to be independent with taking care of my kids. (for the record horrible advice. I am a hot mess without my husband by my side helping me along with this stuff. And I think the true model of an amazing Pastor is how he takes care of his family.) Toby needs us, both of us.

So we came to Texas and I dove right in. Ladies Conferences, Teen activities, Missions Trips to New York and Washington DC, plays, counseling, nursery, children's church.  We dragged our kids along where we could and got a babysitter for when we couldn't. My kids were not gonna slow me down!

I desperately tried to keep up. And wanted to. I loved it. I loved being in the work. Being a part of the work. I loved every missions trip. I loved every activity. (ok not true, but for the most part I did)

A few years later after being scared to death that SB would happen again and coming to grips with God's sovereignty we had Milo.  Milo was my sweet angel baby and now my very hyper 5 year old. He adores me. I adore him. It works out well for us.
A couple years after that we had Vander. My lazy snuggle bug. Daddy's boy all the way and one really bad two year old.  But he's super fun.

We were done. DONE DONE.  (yea right)

A couple years AFTER THAT we had Wren. You can read a little about her scary beginning here.

Somewhere between all those babies ministry changed drastically for me. It was a slow change not an overnight one. I stopped making it to every activity. I stopped going on missions trips. I stopped saying yes to everything and pushing myself to be a part of everything.

I felt like a failure. I felt like maybe I had given up. Maybe I wasnt trying hard enough. Maybe my heart wasnt in it. I was wrong somehow. Because it didnt even feel like I was a part of it anymore. The church had moved on without me and I was living a very different life than I had planned.

It has taken me some time, and its still sometimes a struggle to remind myself. But I am doing ministry. My ministry might look different from Nate's, but I'm doing it. I'm doing one of the most important things I could be doing. If I choose to look at it differently I can easily choose to be bitter against my kids, bitter against God for allowing my children to have special needs. The needs and their lives consume me. They are little vacuums that suck about all the energy and life I have.  I minister every day. When I change a diaper, I minister. When I make a meal, I minister. When I discipline, I minister. When I teach them, I minister. and heaven help me even when I do laundry, I minister. 

I miss things in ministry and honestly a lot of times its the fun things. The London trips, the Guatemala trips, The activities, (except for when we were with young families then my kids did the activities with us, it was awesome) I give up what some might view as the "REAL" stuff.  The hardcore ministry. But Im beginning to look at it differently. I'm giving up the really neat fun stuff, the spiritual highs and the great opportunities, for the front battle lines. I'm raising the next generation of ones that follow Jesus. Ones that stand for righteousness. Ones that will fight for their faith. Ones that will share their faith. And honestly with todays news, possibly the ones that will die for their faith. 

I'm IN ministry. The greatest most important ministry that God could have ever given me the responsibility for.

And trust me when I say, I know that this isnt just Pastor's wives that struggle with this. I know there are plenty of wives that are at home right now while their husbands seem to be a part of something bigger, something greater. I hope I can encourage you with, 
If you are doing what God has called you to do than you are doing the greatest, biggest something you could be doing. 
to doubt that would be to doubt God. 

ps  I still love working in the church and I do every chance I get. But I no longer feel the guilt when I say no because I know I'm choosing what God has called me to. He granted me these lives to take care of and he allowed 2 of these lives to need extra care. There is no doubt in my mind I'm doing what's best. And yes I do look forward to a time in my life when I will be able to do even more for the church and "traditional ministry jobs" but I dont pine for it. 

Thursday, September 18, 2014

offense, fights and body slams

 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.    had a fantastic response to the whole thing. It was well thought out and not terribly emotionally charged. It just made sense. It was wrong. And here is why. I love those type of posts.

But then again there are those things that just aren't big deals. And we  post about them and get all crazy. And we comment to each other the horror of it all. We practically pat each others backs for getting offended.

Tonight I read this blog entry titled, "When did we start hating big families."  Honestly I clicked on the link and read it, thinking Id be fist pumping the air, sharing the blog on my facebook and all us mommies of big families can comment on the horror of it all.  But when all was said and done and I sat there. I just couldn't share it. None of it really rang personally true to me. When people say "Whoa you got your hands full."  I don't think they are commenting on the fact that I have too many. Or that they wish some of my children weren't alive. But good grief that's how we can react. I merely say, "a really good full."   On the back of my car I have a vinyl that says, "if you think my hands are full you should see my heart." it wasn't because i got so many bad comments every time I went out but more in a way to make sure those commentators knew how awesome this was. This life of mine. Its AWESOME.  BUT FOR REAL, MY HANDS ARE FULL. I AGREE. Sometimes people even say, "You know how this works right?" or my least favorite "You need to get a TV in your bedroom." But honestly do they mean harm by it? I really don't think so. Dumb comments? sure. Harm? not so much. I cant say that Ive had any big family haters and honestly the thought seems a little crazy to me. Everywhere we go I get comments on our family, some odd, some not so thought out, but never straight up hateful.  And honestly for every odd comment there has been 2 great sweet encouraging comments. (and trust me I'm sure there are hateful people out there that would love to tell me to use birth control and all kinds of stuff but for us it just hasn't happened and I don't think society as a whole feels that way)

Another example.

A few weeks ago I was scrolling through my newsfeed at a doctors office and this popped up
because of Wren's eye issues. (nystagmus and possibly occular albinism) I'm a part of a group called "Little Four Eyes" Its a support group for moms of kids in glasses and such. And let me tell you they were freaking out about this!!! A school had put this up for the science fair. Again, at first I was like "THE SHAME."  And then I was like, "wait, what? really?"  Is this really a huge deal.  I mean really. Dumb move by the school, But really awful, horrible, formal letter complaint? I don't know about that.  I think some of the parents need to realize that "being nerdy" is kinda in.  (I only know that cause Nate's back working with Youth for the time)  But these mommies (now not every one) were horrified by this.  And of course everyone commented and patted each other on the back and discussed the woes of how hard it is. (Which honestly, when you have a kid in a wheelchair its a little hard to feel too sorry for a 5 year old in glasses when they don't have a serious eye issue. )  But really, I just didn't get the horror of it. I didn't understand how horribly offensive this image is.

Sometimes I think us mommy's are such strong fighters for our kids because a lot of times we have to be. But sometimes because we are so used to fighting our first reaction is to body slam someone. (and yes Ive been the body slammer and the body slammed)  If I take myself out of my situation, baby with eye issues and Toby in his chair or crutches would I know how to perfectly respond or know what to do.  I know we all hear ADVOCATE. STAND UP. PROTECT. and yes absolutely we should. But trust me when I say I think can we do more damage than harm sometimes. I think so. Ive stared down a few moms that haven't handled things well with questions from their kids. Ive been ready freak the freak out on some.  Ive  seen posts of people chewing out someone.  I wonder if sometimes we make people afraid to ever talk to someone in a wheelchair. Do we scare them off with our ferocious body slams because they didn't use the terms we like.  They aren't in our shoes and in our situation. What would we be like if we we rent here. We might just be saying some dumb junk ourselves.  honestly, Im pretty stinking sure I would be.  
What you didn't use the correct term for disability??! BODY SLAM.  What you used the term disability, don't you know its differently abled!!?  BODY SLAM. You didn't bend down when you spoke to my son?! BODY SLAM. You bent down when you spoke to my son, do you think hes a baby!? BODY SLAM. 
 I mean really these poor friends of ours. I really am all for educating and teaching and helping people understand what is appropriate and whats not. But sometimes I think we have a long list of  "rules" and people ended walking around trying their best to not offend us. Or they just avoid us because well chances are we are going to be offended anyway.  And we just keep freaking the freak out. 

maybe when it really is time to freak out, maybe people aren't listening as closely because we just about pooed our pants about the past 7 things that didn't actually matter.

We are fighters. We fight for our kids in glasses. We fight for our big families. We fight for our kids in wheelchairs.  

And I applaud you because I do the same. 

but maybe.....just maybe we need to make sure its really a fight before we


(im a little afraid of getting body slammed for this post)