Tuesday, February 25, 2014

Two sided truths

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 comfort zone with this post and show you the 2 sides. I know not every parent  of a special need child feels these. I know these wont apply to plenty of families. But this is my two sides. This is my pretty and my ugly.

The Pretty
1. I am amazingly proud of my son when I see him do something for himself and become independent in an activity. I can struggle watching him try so hard but in the end it is a beautiful thing.

The Ugly
1.  Sometimes I just dont care about independence. Sometimes I just want to pick him up. Do it for him. Let it (whatever it may be at the time) be done and over. and not for his good. but for mine. So my life can just move on and we dont have to wait another 10 minutes for the dreaded braces to be put on or the shirt to be buttoned.

The Pretty
2. When he is at a friends house or an activity I miss him fiercely and our family feels very incomplete.

The Ugly
2. When he is at a friends house or activity I realize how much easier it is to go places without a wheelchair and stuff. I can easily feel so overwhelmed with how hard it really is with a handicapped child. How what seems normal really is stinking hard. Then I can be overwhelmed with guilt at those thoughts.

The Pretty
3. I just want the world to give him a break and be willing to help him out. Teachers to show some special treatment. Move to the front of the line. Park close. Let characters at Disney world (not that weve been but if we had) show him some extra love.

The Ugly
3. I just want the world to treat him normal and see the other 4 beautiful children around him. I want them to take my other children's hands and show them attention and love and make sure they know they are just as special. That there is no difference

The Pretty 
4. I am thankful for this amazing gift that God has given us. That we have seen more grace, love, hope and faith through this child then I ever thought possible. I would never change anything about the journey.

The Ugly
4. I wish it were different

The Pretty
5. I am patient and understanding with him.

The Ugly.
5. I am short tempered and frustrated with things I know he cant help.

The Pretty
6. His disability has helped shape our family into what we are today. It has given his siblings a compassion and spirit of serving that I would never have been able to teach them on my own.

The Ugly
6. His disability can turn our family from stable to roller coaster in 60 seconds. Our children can be slammed with fear over puke. Our children understand that at any moment we could be in the hospital and they are tossed to and from other homes while we pour our time into one child. (thats hard people) We try to explain and compensate but really...right now...there just doesnt seem to be a way.

The Pretty
7. His disability affects his ability to walk and run.

The Ugly
7. His disability affects so much  more than you can see. It is much more than just his physical life affected. And I never want to admit that. It scares me more than wheelchairs.

The Pretty
8. He gets invited places and is involved in other kids lives due to loving friends.

The Ugly
8. I am always afraid he will not be included, not be invited, not be able to keep up because of his disability.

The Pretty
9. This is just our new normal. We do what we do and its no big deal. He is who he is, wheelchair and all.

The Ugly
9. I still cry.

The Pretty
10. I push for strength. We do therapy 5xs a week and constantly make him do more and try harder.Its worth it.

The Ugly
10. I continually struggle with fear that I'm pushing too much, too hard and that there is no way I can understand how he feels. Sometimes I want to give up, give him his wheelchair completely and just say, "Please, just be happy. Please."

The Pretty
11. Over time I've developed thick skin for words and stares about him.

The Ugly
11. Sometimes words and stares break me and a trip to Target can make me nervous beyond belief. All it takes is a couple stares, ugly comments, rude kids and the next 10 trips are terrifying.

The Pretty
12. Our family outings looks a lot like yours.

The Ugly
12. I wish our family outings looked a lot more like yours.

The Pretty
13. I'm so thankful for the wheelchair and how happy he is in it.

The Ugly
13. If I have to get that wheelchair out of my SUV one more time I might just chop my arms off so I am no longer able to. I hate it.

The Pretty
14. I'm confident in our Doctors and our choices of treatment.

The Ugly
14. It feels like there is no one you can trust. You are the one making decisions on ER visits, CT scans, surgeries and that burden is enough to crush you. The weight of his health is on your shoulders and that is something I never understood about special needs parenting.

The Pretty
15 I am upfront with our struggles, honest and transparent.

The Ugly
15. I hide a whole lot. There are parts that you will never know about our life and things we do that you wont understand. You think you know what it consists of. You think you understand our day to day. But really you dont.

So you see....The problem is. Both sides are TRUTH. There's just two sides. And yes someone pointed out recently. Blogs are weird. Its a journal but everyone reads it. Weird...creepy....But yet I think there is good.  I know that sometimes my feelings feel very alone. very isolating. if maybe one other moms knows hey its okay. there are two sides and sometimes there are people out there that get both sides. Or if one person says to me, hey I get number 14..There's community in that. There is rest in that. And at this point with the roller coaster, bipolar, jump the grand canyon life that we live...Ill take some of that rest.



Friday, February 21, 2014

my pretty package got thrown away

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 take Toby into the ER.  
(sorry i know some of the details bore you but some people really like it and well...i do what i want here) 
Loooong story short. We are home. We are home with almost less answers. The ventricles in his brain were larger than 10 days ago but not large enough that neuro says surgery is necessary now. He said is the shunt on the way to failing....maybe....Can we fix it with changing his valve setting.....maybe....Can the shunt fix itself....possibly....Is this related to the bump.....I dont know....Why is it changing shapes....I dont know. Whats the game plan....I dont know what to do with him.   So yea... So we are home with a valve change praying that is all it takes to kick this shunt's butt into high gear. And praying our incredibly conservative Dr is right. 
 So we go home and not 10 minutes after we get home we get the call from our realtor.  The people had to back out. The husband lost his job. Now dont think I'm insensitive because thats awful and I get that and Ive thought about and prayed for that guys wife that seemed so excited to buy our home.  But at that exact moment my thoughts went to more house showings.
NOOOOO....  More crazy momma clean house time. More leave the house. Jump in the car. Cant go home for naps. And I cried. I totally did. I got off the dumb ol phone and cried.  
The thing that is sometimes hard about the whole sovereignty of God is that sometimes you think you have His whole plan worked out. You think you know what He is doing and how He is doing it and then BOOM. Its different...and its usually not as pretty of a sovereignty package as you would like. 
My pretty packaged looked something like this.  a. go to the hospital there is something wrong we do surgery no longer worry and out done with this section.  b. go to the hospital nothing is wrong with shunt but they are sure it is a virus and nothing more, we go home and no longer worry.   All tied up with a great big red bow.
Or my pretty package of soverignty for the house was so nice and seemingly was already gift wrapped and delievered. someone buys are house for more than asking price in less than 2 weeks of it being on the market, then they dont ask for any repairs because they missed the option period. with a nice ending of  We pack up and move out at our perfect date.  Now its more like....all the first part (since it already happened) but then....And then they backout and we are now stuck trying to sell a house very very quickly.

SAY WHAT!!???

I really liked my pretty nice clean choices so much better.

And yet here we are.

Its not even a doubt God thing. And Ill tell you why. Its because I'm in the WORD.  Like really in the Word. Not just oh this verse sounds nice and this fits what I want to hear from God. But IN GODS WORD ALL THE WAY UP THE ELBOWS.  this is not a pat myself on the back moment but more of the difference to how i handle trials now that im truly digging deep moment. 
You see Ive been reading in Revelation. And well...Ive been really wanting to read Revelation but I figured there was no way I was going to "get it" "understand it" or "for petes sake apply it to my life today" but I really really felt like thats where I should be.  And let me tell you I love it.  Its awesome, amazing and has been so eye opening.  But here's the real deal. Here's where the POWER HITS. Last night I told Nate (and he so kindly reminded me today) " how can people think God cant handle and be in control of their little tiny problem when He will be in control of all the end time events. All the tribulation. All the things that happen will be within His power. His time. His way. How in the world can anyone doubt a God that can control so much and be so amazingly awesomely powerful?? Yea well, good thing I said that and good thing God showed me that because today when the temptation to believe that God's sovereignty might not be as sovereign as it is I got a good reminder that....His sovereignty is just that.  Sovereign.  
It doesnt matter if it looks like I think it should.
It doesnt matter if its going a certain way and then turns another direction. 
It doesnt matter that its not wrapped up with a great big red bow for me to open and holler about how Great God is.
It doesnt even matter that what I thought was my pretty package got seemingly thrown away.
He's Soverign. He's Good. He wants good for me.
                                   And well thats quite enough for me to get it together and go clean my house.

Sunday, February 16, 2014

The mommy martyr

This picture.....

This picture  makes me smile. It also makes me feel slightly crazy cause well taking any picture with 5 kids is crazy. (though wearing pajama pants makes it feel somewhat better....it was sunday afternoon..pajama pants)

So if you cant read whats on the back of my car it says

If you think my hands are full, you should see my heart.

This saying means a whole whole lot to me personally. Hence it being plastered on the back of my car.

So I thought Id do a quick blog post on why.

1. I need to remind others. Yes, I might look frazzled and crazy getting in and out of my car. You might see me chasing a wheelchair zooming down the slightly sloped parking lot all while dragging a grocery cart full of kids behind me. (its happened) You might see me even slightly (of course only slightly) lose my cool with a couple of the sweet charming children. I might drop 15 items and leave 5 more behind when I come to your home. I might misplace my phone 500xs because I'm always running around calling Doctors/friends/husband and then setting it down somewhere. And  a sweet smiling stranger....or okay a stranger EVERY SINGLE TIME I leave the house might kindly come up to me and say with a laugh, "WOW You've Got Your Hands full"  And yes I do. Yes its crazy. (Yes thats pee leaking out of diapered kid)....But these kids have filled my heart even more than they have filled my hands. And I truly want everyone to know that. Because today teens are taught to work harder, work better, get better grades, go to a better college, have a better career, make more money...more more more. being a mommy isnt enough. being a stay at home mommy sure isnt enough. and I want to fight against that thought. hey being a mommy is stinkin awesome world!

2. I need to remind myself. Through all those crazy things I just described. Through the spills, the tears, the fighting, the falling, the 'I need help',  the 'mommy can you...." through the middle of the night cuddles, the pukes, the dinners, the lunches, the clean ups and the 1000 other things that I know every mommy reading this understands.  Here's the thing though. Ive noticed a trend in blogs. And dont get me wrong I get it. I GET IT.!!! I can scream that at the top of my lungs before you read this next part.
There is a going trend in blogs and they all seem to have the same theme.."Being a Mom is Hard." I like to call it the mommy martyr.  And it is. I get it. But sometimes....just sometimes I kind of get tired of seeing the martyr flag rising high for us moms.  I get tired of the, "This is so hard." Lets all go cry in our cups of coffee together and talk about how wiping rear ends is so hard.  I know I'm not going to gain any followers with this post. But here me to the end at least. Are we truly martyrs? Are our lives really truly oh so very difficult? Or do we really truly have the most amazing job and responsibility in the whole world? Are there hard days? YUP. STINK YUP.  But are we doing each other any good by wearing our martyr robes for all to see? I get the honesty and as Ive said multiple times I love it. There is beauty in it. But from personal experience. When I wear the martyr flag for all my friends to see I also wear it for my children to see. They know when they are the burden. They know when mom is fed up, They know when mommy feels like she  has given too much too many times. And I just cant imagine what that must be like. If my friends all walked around acting like they just couldnt put up with one more of my mess ups or shenanigans......well we probably wouldnt be friends any longer. And I probably feel like a totally piece of doggy poo stuck on the bottom of someones shoe.
Then I think of the women who cant have children or who maybe have had multiple miscarriages. Or maybe have one child and would desperately love more.  What must they think of our martyr flags?? If I were them Id want to jerk it out of our scrawny spit up spewed hands and shred it! But really. Nothing puts it into perspective quite like knowing not everyone has this option, not everyone gets to stay home and have kid after kid after kid. So who am I to wave my martyr flag? Who am I to complain and gripe and roll my eyes at something God has BLESSED ME with!!! 
So with all of that said....I need to remind myself. When my hands feel so full I cant take another second. I cant take another day. I cant take another week. I need to remind myself..How blessed. How amazing. How crazy good God is. Because even though my hands are full.....and they are VERY FULL.....my heart is that much more full. And sometimes I want to raise my martyr flag the highest of all.....

God is good. God has blessed.

Saturday, February 8, 2014

perfection

When did perfect become the new standard?

I'm not sure what happened along the way, but somewhere in my Christian walk I decided (as I know many have) that perfection was and is the only way.

And really it kind of got worse with my Bible reading. I was growing, enjoying, seeking and learning so much. I was changing some here and there. But not this awesome overnight amazing awestruck all my friends and family can tell a difference type of change.

More of a, hey I would have said that horrible awful thing that just popped into my head and I didn't. 

that felt like a very minuscule success.

or a don't think that thought, don't judge that person, don't look at their sin look at yours battles going on in my head

when i would have just thought them

again....a tiny speck of success on my large grand scale of perfection. 

I felt like I was failing. Failing God. Failing Christianity and feeling like The Bible didnt have the power it claimed to have. Or maybe it was just plain me. There was something wrong with me.

Nates dumb ol sermon on fear has taunted me in my mind for a while now. The Bible never says its okay to fear. SAY WHAT????!!!!  Not cool Nate. Not cool.

I am struck with huge gigantic title waves of fear on a regular basis when I think of Wren and the unknowns.

Again failing.

Then I started reading in Acts. Acts is long. I trudged through Acts. Dont get me wrong. Its awesome. Its good. and we ALL KNOW ALL SCRIPTURE IS WORTH IT.

But I really started noticing the beauty in Acts. Not necessarily the miracles and the cool things the disciples did but I was getting glimpses of humanity.

Humanity. Mistakes. Not quite perfect Christians

Paul and Barnabas fought and actually left each other. The people praying for Paul to get out of jail didnt believe he was at the gate actually out of jail. Paul might have preached a little long winded.  the poor guy who fell asleep and fell out the window because Paul preached so long.

But in that there is Grace. 

Paul still did amazing things for God. Paul did get out of jail which means that those (not quite so perfectly believing Christians) had their not so perfect prayers answered. (maybe their faith wasn't even as big as a mustard seed.) Paul said amazing things and many people believed on Christ.  And oh the poor guy that fell out of the window, Eutychus, was raised up again.

Beautiful Amazing Grace.

Beautiful Amazing Humanity.

When was perfection the answer? When did the Bible lose power just because I messed up?

My story isn't finished yet. God still has lots and lots of work to do on me. But I'm praying that as I am learning and growing and striving towards sanctification. That people can look at me and say
....
YUP humanity....
.                        BUT oh that beautiful amazing grace.

Because truly that is what my life story is. Lots and Lots of Humanity, but mixed in is even more beautiful amazing Grace. 

Psalm 28:7 The Lord is my strength and my shield; my heart trusted in him, and I am helped; therefore my heart greatly rejoiceth; and with my song will I praise him."

Monday, February 3, 2014

Facebook and Trials dont mix

Funny how the last post I wrote I thought we would have answers about Wren. And today I sit without answers for Wren AND Toby.

Such is life.

So todays post is for me. Really just some thoughts ive been thinking but want to put into sentences.

The dreaded blog post about FACEBOOK.

But this time I dont want to talk about being a "hands free mama" (though I love her posts) or talk about how awful facebook is.

I want to talk about trials and facebook.

Facebook has created quite the little phenomenon in the christian community. Especially for extroverts like myself.

We get to voice our thoughts way quicker to a way larger audience. When we get bad news, hard news, something hurts or we find out about a trial we can quickly update our status in our very raw emotional state and boom put it out there. We hurt. We are frustrated. We are sad. We are lonely. We are exhausted. We are scared. We are _____________________.

And its there for the something + friends you have to see it and to comment on it.

It makes our trials (at least for extroverts) be seen at every angle and at every point of the process. We rarely get the time to breathe, to think things through or to heavens....PRAY about something before we update our status as to what is going on.

Now let me say, of course there are lessons to be had about being careful about your words and turning to God and not to facebook. but let me also say facebook is there...its part of life...so we deal with it and we blog about it.

Facebook can and should be a beautiful tool of a place for Christian to pray for one another. Like really pray, not just "hey im praying" and never think twice about actually praying (been guilty of that myself)which is why i hate all the hating on facebook. its been an amazing resource for me.

But you know the raw posts dont get me. Because I get it. I get the process. Just because one second you are at the tip top of frustration doesnt mean you dont trust God. Just because another second you want answers from your child's doctor doesnt mean you dont have faith.

It means sometimes that we just want you to get it. To know. That we just need someone to know that its hard and say....Im sorry. Man that stinks..Man that hards. And we know that there are people out there, real true honest to goodness praying people out there. From a special needs mommy perspective sometimes this job is straight up lonely. Sometimes you can feel like no one gets it and you so desperately want someone to just get it. get that its hard.

But here's the problem. We open ourselves us to every comment out there. Every person who wants to take our post one way or the other...and well we choose to so its kind of our bad.

And oh do they.  Every Bible verse. Every but God is good. Every but have faith as a mustard seed. Every be strong in the Lord. Every look on the bright side. Every at least your not ____________.Every comment that tries to steers us in the right direction.

I get it. I do. I get that everyone is well meaning with their Bible verses and their sweet words of, "just have faith as a mustard seed" but sometimes that just isnt what we need. I know I know you cant read our minds, you have no way to know exactly what helps and what doesnt. But sometimes our trial and our raw emotion facebook update isnt the time we need you to teach us. Isnt the time to remind of where we should be. Its the time to WAIT.

Wait for us. Bring us before the throne. Offer us extroverts that put everything out there some grace.  Because chances are we are gonna get there. We are gonna breathe. We are gonna take a step back and go....well shoot that was slightly dramatic now wasnt it. Or ok...God is still good. Okay at least _________.

But let us feel the emotion...and let us just move passed it. Let us deal and cope. And pray. And wait.

Because it stinks to be in the middle of something and to feel like everyone is trying to teach you. everyone is trying to tell you how you should feel about it.  
Maybe one day Ill learn and not put everything out there....but Ill say it once and Ill say it a thousand times probably.....There is beauty in the process. There is beauty in the getting to where God wants us and needs us to be.


PS   Sometimes the best thing to say is, I'm sorry.  No....its ALWAYS the best thing to say.