Monday, October 29, 2012

Chaos & Shalom

Last night at church our pastor spoke on prayer-- about asking for God's Kingdom to come here on earth- as it is in heaven. 
About being in the NOW of things- but expectantly believing in the things that are to come. 
He spoke about how life is often chaos, but that it is so delicately intertwined with shalom (shalom is more than just the idea of peace, but the idea of wholeness and delight)

I just couldn't help but soak in the words he was saying. To smile as he spoke, completely grasping his message. Because it so beautifully described what we are living right now. 

Our lives are a beautiful blend of CHAOS & SHALOM

Last week we were invited to a halloween cookie decorating day. It was three moms, a 2 year old, a 19 month old, Emmaus and a little bitty baby boy. 
It clearly was a bit of chaos. 
I planned and brought extra clothes for Emmaus because I wanted her to be able to participate. I knew full well she would make a huge mess, that her lack of fine motor skills would make "cookie decorating" a very loose term.  But It was important to me despite her delays I let her try. 
And a mist the chaos- in the table covered in frosting, and the floor covered in crumbs was shalom. I wasn't sad at her lack of ability to manipulate the cookie, or stressed about her sticky frosting covered self. Instead it was peaceful, the experience was whole, and delightful.
We can't control our lives- we have to just live in the now, soak in the chaos and shalom & hope for what is coming.  


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Sunday, October 28, 2012

Zombies, Germies and J.Biebs

Sometimes I am afraid of irrational things. Like when I get called into work at night and have to leave my house after dark I like to be safely locked in my car BEFORE I open the garage door. It might see a little odd. But there is just something very vulnerable about opening the garage door before I am safely locked in my car. Truth be told I am not scared of the "bad guys" I am scared of the ZOMBIES. ( Remember....I started with admitting my fear was IRRATIONAL). I once read this book called World War Z which is very realistic (minus the zombies). Anyway since then, I am kind scared of being alone outside of my safe house in the dark.
And then there are real fears- like germs (I am totally unafraid of germs normally). However- ever since Emmaus' last bought with sickness I have been a bit paranoid about her getting sick again before surgery. Normally I am all "bring on the sickness" believing it is good for your immune system- but not right now. And here we are with her starting to get sick again. If you are a prayer pray RIGHT NOW that it stops. We really want to keep our surgery date and not have to reschedule due to sickness.

And there there is Justin Bieber. How is he related to this conversation?! Well I don't really know- but I got to go see his concert with some very fun friends this weekend. It was very loud- due to the crazy screaming teens- but so so fun. It was the PERFECT pre-surgery therapy for this mama. I got to get all dolled up,  have a great girls night and dance all my stress away. (P.S. every joint/muscle in my body is sore from the dancing that took place...or maybe it was the staying out till 2am...I don't know which did more damage.)
Our Jr. High girls Bathroom pose- so excited for the show!

Are you going to keep reading now that I have admitted my zombie fear and J.Biebs love?
It's okay either way. Honesty- that is what you get around here.


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Monday, October 22, 2012

A story about provision on a monday morning.

This morning I got a bonus day- I didn't get called in last night so I don't have to sleep today~ But I had a babysitter already so I went to jazzercise kid free and then to starbucks to have a few minutes of alone time. So a guy at starbucks bought my drink just cause "he wanted me to have a happy monday". YEAH, THAT'S AWESOME.
So I got to thinking.
I have just been overwhelmed with the blessings we have received in the last few weeks. 
People have brought meals, groceries, we have been well taken care of. 
The other day a grandma- age lady at the thrift store I was at bought a bunch of fall clothes for Emmaus. Just cause she wanted to. 
(My bff is the ultimate thrifter- its kinda crazy- and while I cannot stand thrift stores, I find a ton of great clothes for Emmaus there, and since kids grow so fast they are HARDLY worn. Its awesome...and cheap!) 

And more awesome than clothes or starbucks is this. 
I have been freaking out about our unpaid time off for Emmaus' surgery. My work does not have PTO, and Dan has used all of his for the year so we are both taking unpaid time off for her surgery, then I will take two week off after for her recovery. And well that is one of our incomes that is down for the count for the month. I was trying to find a way to work some weekends, or something. Even though I knew I should just be home. 
Well a family friend felt that they wanted to give to us, help us with medical bills, ect and they      unknowingly gave the exact amount as our unpaid time off.
The day we got their letter and the check they sent I journaled this from Ephesians 3
"To him who is able to do immeasurably more than all we could ask or imagine...to him be the glory...forever and ever amen." 
Then I wrote 
I hope in the Lord to provide

It is humbling and a lesson in graceful acceptance to need help.
But we are so grateful. It has made us more generous. It has made us more aware of those people around us that need help. 

Thank you Lord for your constant provision in our lives. 

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Sunday, October 21, 2012

OH GIVE ME A BREAK!

I have been racking my brain over what to make Emmaus for halloween. I am a big fan of homemade costumes. It just seems they are so much better than store bought- Plus I LOVE creating, crafting, and ending up with a finished product I can be proud of.  And this year...I've got nothing. Which is disappointing cause it's only her second halloween! And I only have one child to think of a costume for. But I just don't have the energy or mental creativity to think of something cute and make-able.
She was the cutest little octopus last year!



All of my jeans are too tight...all of them. For a while I refused to buy new ones thinking I would just loose a few lbs and be fine. But even though the number on the scale has gone down...they still don't fit.
So I came to a cross-roads this weekend.
I bought a halloween costume...AND I bought some new jeans.  (Both from savers mind you).
You see I could find the energy to come up with a costume...but at what cost? And what would I have to give up to make the time to make one?
And Although I wish I was in the shape I was this time last year... I'm not.
My life has been very stressful in the last few months, and I haven't gotten to work out like I used to. I haven't gotten to eat like I used to. And so I can beat myself up about it- or I can just buy some jeans that fit so I can focus on my life. (And not have to wear sweats everywhere I go)
So I'm giving myself a break. Grace- I think it is called grace. Where I will eat the healthiest I can, go to jazzercise when I can and just do the best I can.
Cause that's all I can do. And it's just not worth beating myself up over.

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Wednesday, October 17, 2012

A word or two about my job

I work in a free-standing birth center. A beautiful place where midwives help women do what their bodies were designed naturally to do. I am surrounded by women daily who feel empowered to give birth naturally. To trust their bodies, feel safe in their surroundings and lean on the support of other women. 
People are often shocked that after working in a hospital I "believe in" or "work at" an out of hospital birthing facility. 
But it is truly the most amazing job. It is such an honor to serve our mothers. To empower them. To reassure them.  To stand in the gap when the doubt creeps in. To help them become mothers, or become mothers again.
People often elude to screaming out of control mothers- when speculating about my job. But truth be told that is the exception-not the standard. 
Our mothers are incredible. 
They surrender to their bodies, to what naturally is happening (even if it feels unnatural) and let it happen. Most have calm, well controlled BEAUTIFUL births. 
I daily am learning from these women. 
Even using these lessons in my daily life. 
I have to to surrender daily to what my life's circumstances are. I have to be calm (yes even through impending brain surgery of the little one) even when things feel unnatural or like I can't get through them. There is beauty all around me. Beauty in our circumstances, in our sweet little girl, in the generosity and support that we are being surrounded with. 
Tonight I can't help but love my job- and love that it is constantly teaching me. That it is constantly making me grow. 
I love helping and empowering our mamas, but truth be told- they are really doing the same for me. 



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Sunday, October 14, 2012

A thought on love & hope

I sometimes forget how much God loves me. How much he cares about me. About our family. About Emmaus. Tonight at church during worship I let "He loves us, oh, how he loves us" just soak into my soul.  
Cause truth be told God loves me so much. He cares about me so much. He wants good things for me. He cares that Emmaus has TS. He hates that she has TS. 
Cause that is not how he created this world to be. And I find that comforting.
I also realized that I am fearful of being hopeful that this surgery does amazing things for Emmaus. Dan  and I discussed this on our ride home from church. He agreed he struggles to have high expectations because it hurts when they aren't met.  And lately it seems they have been met very infrequently in our lives.  But I want to hope. I want to believe. I want to have incredible hope that Emmaus will be seizure free after her surgery, that she will learn to walk, and talk and go to school.  I know it will be hard if it doesn't go as planned, but you can't always prepare for the worst. Sometimes you have to have unbridled hope. Faith. To throw doubt, dread, despair and FEAR to the curb and just HOPE. 
The end of this week and weekend were so redeeming. Emmaus was a joy. She was herself. She was so interactive, moving all over the place and just fun. I needed a few days of that. 
I remembered the fun that being a parent is- they joy of it. I maybe had forgotten a little bit. 


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Thursday, October 11, 2012

Love is in the hand holding.

So sleep depravation is a form of torture. I think that is why I have felt so crazy lately. 
LACK OF SLEEP.
You see, the last TWO count them TWO nights I have sleep most of the night (Thank you miss Emmaus).  I feel like a new woman.
 Like I can do anything. Its amazing what a little sleep can do for a person. 
AMAZING. 
Emmaus is feeling a bit better- Dan is feeling a bit worse- 
he seriously went to bed at 645...yep he is sick.
But miss Emmaus has been so sweet the last few days. Wanting to snuggle her mommy, wanting to hold my hand.  It makes the hard stuff worth it. It is light when we have had a lot of dark days lately.
 It is lovely. 

And then there is this Epic hair. I usually comb it, or put it in pig tails, or something. But truth be told it was such a victory of her sleeping the night before I just left it all day. Cause it made me happy. 
I love that sweet crazy hair'd girl.


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Tuesday, October 9, 2012

The deets on the brain surgery & a few other things


I really wish I could say our week has started as good as our Friday evening & Saturday were.
Friday night was full of delicious date night food

Saturday Sweet Kisses
And extreme enthusiasm about a bounce house. The girl couldn't get enough. I assure you it was pure glee.

Sunday lead to snotty noses, ear infections, fevers, and today a breathing treatment and some good old deep suctioning.

Man- I am exhausted. I can do chronic illness, or acute illness, but both....I cannot do that. It has been weeks straight of Constipation, EEG hospitalization and then self and now her Illness.
Can't a girl (and her mama) get a break?!

After talking to the doctors we decided we will go ahead with the Tuber Resection. Miss Emmaus will have brain surgery at St. Louis Children's hospital on November 15.
It was not an easy decision to make but we truly are hopeful that it will change her life tremendously.

Speaking of hope. I have been a little low in the hope area lately. And truly may have crossed over to complete self pity often. But I am working on it. 

We truly are surviving based on the kindness of others right now. 
People are bringing meals, people are coming over so we can sleep for a few hours, people are watching Emmaus so Dan and I can go on a date. People are sending us sweet messages of hope, of encouragement. We are so thankful and so overwhelmed by the generosity of those around us. It is so hard to ask for or accept help, but truly we need it right now, and so many are helping. And we are humbled and thankful. 
(And Dan is extra thankful for the meals- cause I am working too much and too sleep deprived and dealing with 100 different sick baby things to plan a meal- so thankful to you meal bringers he doesn't only have to eat turkey sandwiches and cereal) 


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"Therefore we do not lose heart, though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us eternal glory that far out-weighs them all. So we fix our eyes not on what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal" 
2 Cor 4:16-18

Thursday, October 4, 2012

uhhhmmmmm what?! That cray cray.

Today was a lovely day huh? Fall weather was happening big time in my part of the world. My bestie treated me to a pedicure- and then we pigged out on Thai Place appetizers which never fail to disappoint. 
It was a wonderful kid-free afternoon. 

Mmmmkay- Also let us talk about this craziness. 
This is our bill from our recent trip to St. Louis- I won't get into the room cost, or EEG part but the $741.00 Pharmacy charge is for about ummmm max $10.00 worth of meds- the really expensive one that cost 83$ a day for WE PROVIDED FOR THEM. So no joke the pharmacy portion seriously would have cost us 10$ max at home.
This is part of the problem with our country- I won't get all political on you- cause honestly I don't care about politics but this is CRAZY- and I think we all can agree on that. 
Word to Big Bird- Oh wait- I hear that is a political statement as of this morning.

Love,
La

Disclaimer- the above amount is covered by insurance (thank the Lord) so no need to send us Gobs of money. (Unless you really want to...I kid I kid)

Tuesday, October 2, 2012

the one after the dark and twisty one

My dad said my last post was all "dark and twisty"... Okay he really just said it was dark. (But I have been watching lots of Grey's Anatomy and the twisty part is from that)
It is also probably where I am getting my fear of death...I mean have you ever seen that show? Every surgery almost dies. But its so addictive I can't stop!

I told our pediatrician today that the nurse in me is steady, unafraid, and aware that complications are rare. The mom in me is freaking out a bit.

So Emmaus' team of doctors met and agreed that a 1 stage surgery is best for her. Which means no brain mapping (pretty much where they put the EEG leads ON her brain-making  2 surgeries necessary- and making this process much longer and more stressful- she would literally of had wires coming out of her scull that are attached to her brain measuring electrical activity- ummm no thanks)

The tuber they want to remove caused 37 out of 38 seizures she had while she was being monitored. So that means there will probably still be some seizure activity after surgery- but hopefully very few and something meds can control.

Dan and I are still processing and deciding what is best for our sweet girl. We are pretty sure surgery will give her the best shot at seizure freedom or reduced seizures and we are hoping will improve her development.

Speaking of development. We started pool therapy today which she loved. Until she fell asleep at the end...which is typical- she's a funny kid.
We also had her 15month check up 25lbs & 30.75 inches.  Big baby!

Just wanted to update after my last post that was all dark and twisty.
Thank you all for the encouragement and for still reading even after I talked about diarrhea.

Love,
La