Thursday, August 30, 2012

Happy and you know it

I couldn't help but share. 
I know it seems like a small milestone, but it truly is huge. Cause not only can she clap, but she understand when music plays that you clap, she understand music is fun. It just is so much more than clapping for our girl. For us. 

Those glasses sure are growing on me. She looks pretty cute in them huh?


Wednesday, August 29, 2012

Why I live out loud.

I just read a great blog from a local blogger on "getting followers".  This is something as a blogger I have thought about once or twice. I have thought- wouldn't it be great if I could make blogging my business? 
Or have sponsors and work less - write more?!
But that discussion (its only a discussion in my head- mind you) always leaves me feeling uneasy. Feeling like I am a teenage girl trying to become popular. It leaves me feeling insecure. 

At a church retreat a few weeks ago we discussed our "outs". By outs I mean the way we contribute to the world, or try to "reach" the world. 
And as I thought about my "out",  I knew my answer was my blog. 

My life is messy. It is broken. It is sweet. It is a work in process. It is real. 

And that is what I strive to write about. 

I blog to keep track of memories for my family. 
I blog to keep track of how faithful God has been to myself and my family. (Cause I forget sometimes)
I blog because while a daughter with special needs, a husband with health problems, probable brain surgery, seizures, a miscarriage, and a psycho doggy may seem like a story of isn't. It is a story of Hope. 

And I choose to tell my story here.  


Thursday, August 23, 2012


Hey you.... KID.
Yes you! Looking at your toes. 

Now that you have glasses and you can see my face clearly- Can you start working on saying MAMA? 

You say Da-da.

You're dad swears you said Iowa once, and yesterday I am about 95% sure you said dog. 

So here is the deal- I know we have a lot to work on. Standing, walking, chewing, becoming seizure free. 
But if you could just push mama to the front of the line, and say it when I get up with you in the middle of the night, or when you need something, or just when you study my face in your new spectacles. (Now I'm just getting picky...)
MAMA. got it?!

La (aka Mama)
P.S. It is almost 11pm. GO TO BED. (unless you want to say mama- then I will run up the stairs switch on your light and sweep you into my arms and give you a big smooch and a late night snack of ice cream! Or whatever you want. )

Tuesday, August 21, 2012

In sickness AND in health

Today I met a mama who sort of like me in my pregnancy with Emmaus was having a last minute change of plans from the birth center to a perinatologist office. Her baby was fine, it was just a possible change of plans. She was nervous and scared and in our conversation she said- "As long as she is healthy, that is all that matters". 
The most basic of hope for her little one. 
That is such a common phrase. "I don't care if it is a boy or girl, as long as they are healthy". And I have never really given it any thought until today. 

But something about this mama and her situation, or maybe me relating to her being scared in her change of plans got me thinking...

No, it's not as long as they are healthy. Cause when you have that baby you will never ever think that thought again. 
You will deal with the heartache of sickness no matter how severe, you will thicken their formula, pick out their first pair of glasses, pray with them through seizures, spend hours on hold with insurance companies, apria health care, or numerous other people to figure out their care. You will check them obsessively at night when they have a fever, you will clean up when they have the flu, and you will do it all thinking you have the best job in the world! -Being your child's parent. 

You will be obsessed with their accomplishments, worry about their food intake, and food output. You will laugh when they laugh, cry when they cry. Your phones memory will be FULL with ridiculous pictures of your child.
You will be tired, but it is SO WORTH IT- ( I say that knowing tonight is "my night on"- and I will be up a lot with Emmaus and then go to work tomorrow and be tired)

Being a parent is amazing- the love you will have for that little one will blow you away. 
In sickness AND in health. 
-it's not just for the wedding vows-

Saturday, August 18, 2012

bipolar life

I kinda snapped today. Like maybe threw a hissy fit. 
 I don't know what caused it- It could have been the millionth picture of my friends at the lake this summer (sorry if it was your picture). Or my best friend asking me all sorts of questions this AM - that were completely appropriate but made me unzip my backpack  that was stuffed full of emotions that I was trying to ignore. 
Or maybe it is because I feel fall in the air- and it makes me want to pack up head to manhattan and move into a dorm.  
Tonight-  I am wishing I could go back to a simpler time. 
I think all of this is unfair. 
I think losing a baby, having a baby with TS and just having such a big/hard week is just too much.
So while I was feeding Emmaus dinner- I was also crying. Crying cause I don't want Emmaus to have to get glasses, need thickened liquids, or have TS. I want to still be pregnant with the baby we lost. I want to have a "day off" and go to the lake.
So I am sitting there feeding Emmaus and Crying- I sniffle and she cracks up. Like busts out belly laughing. 
And there it is. The joy that so delicately is intwined with the pain. 
A joy that makes me forget about glasses, or TS, miscarriage, or a day on the lake. 
A joy that brings me back to my reality- not one that is just pain- just hardship. But one that I wouldn't trade- even if my whole life is full of these hard things. 
A joy that makes me laugh so hard my tears turn from tears of pain, to tears of joy. 

And that is my bipolar life. I guess I will keep it. (ha- like I had a choice!)

Thursday, August 16, 2012

Oh Hell

You see I am the kinda girl that stands in the shampoo aisle at target staring at shampoos for an hour trying to decide which one to get. 
Or my husband says "Where do you want to go to dinner" and I rarely can decide on a place. 
I have never been good at the decisions. 

So when Emmaus' Neurologist mentioned that we should consider looking into tuber resection AKA BRAIN SURGERY to gain seizure control- you can imagine the how fuzzy my head becomes. 

How is it that God gave me (the indecisive one) a kid that needs such huge decisions to be made for her. 
(We are FAR from making a decision on this one! BTW)

So as for this week, it has been one for the record books- miscarriage, new diet & thickened fluids for Emmaus, glasses for Emmaus- and brain surgery being put onto the table. 

At least while I am standing in the "shampoo aisle" I have a happy giggly girl in my cart and a great husband at my side.

 Makes things a little easier. 
(That and the box of hot tamales I just ate,okay and some PB M&M's but I went to Jazzercise this am!)

Tuesday, August 14, 2012

Incredible Joy

I am somewhat overwhelmed with joy when truly I should be a little stressed out. 
This week we had an Occupational therapy evaluation for Emmaus, An Eye Appointment & then tommorrow/tonight at 230am we head to St.Louis to see our neurologist.
Normally this would make me ultra stressed. But I guess I just have a joyful heart this week.

The OT eval was good. They said Miss Emmaus is not chewing so we need to go back to pureed foods and teach her how to chew in the mean time. We also are thickening her liquids. She has been choking with milk & water for months- so even though this seems like a step back, we are really happy about our options and solving a problem!
Easy gel thickener that makes Emmaus' bottles way easier for her to drink! It comes in packets so it is so easy to add to any drink for her!
If you read my blog from earlier today you saw the result of the Optho appointment. The chubbs needs glasses. She has a very severe astigmatism and the Dr thinks her vision is completely blurry. (Maybe this is part of the reason she will not pick up food and feed herself!) 
6 months ago I cried when they told me she may need glasses- today, I think it is fine. This is our life, she is a joyful incredible child- who cares if she has glasses. Plus she looks DAMN cute in them. 

I am also thankful for....
Have you had these??? Seriously- I am obsessed. I text my sis in law about them incessantly. I bought 3 boxes at TJ's this week. (Just to have for the next few weeks) 

Painted piggies. 

Fall- like temperatures... TODAY WAS GLORIOUS. 

In other news- if you want an Emmaus Roadies T-shirt let me know! 
the quote on the back is 
"Through Echoes in the darkness I will walk the Emmaus road, but I will not be alone."

They are 12$ for non walkers and print cost for walkers/ those raising funds for our walk. 

I am also thankful for a great bottle of wine and homemade pizza tonight, as well as an afternoon of nothing! I need days alone to recharge. 


Four Eyes

Cutest little four eyes ever. 

Sunday, August 12, 2012

Hey you- stalker/friend.

A friend recently said "I stalk your blog" all the time. 
But truth be told- I don't really think of you all as blog stalkers- but cyber friends that read what is happening in our lives- live along side us- cry with us and celebrate with us. 
In the last year Emmaus has made a ton of new little friends

Charlotte Share's her snacks with Emmaus 
Nellie always wants to hold and snuggle Emmaus

These two are the cutest little besties that ever were.
Lila is always sweet to "maus" and from the start of Emmaus' seizures has said the sweetest little prayer for her.
"Dear Jesus, Baby Maus, all better"- 

Making memories at the pool with some of my oldest friend's kiddos.
Become a blog FRIEND- instead of a blog "stalker". Sign up to follow my blog on the right side bar- you can use google connect. And sign up in lots of ways- or you can sign up to get the blogs sent to your email. 
Stop by, stay awhile, introduce yourself, leave a comment every now and then.

Friday, August 10, 2012

Loss & Hope

This is my second attempt at writing this- my first one was sterile, emotionless and factual, and well honestly, that is how I have learned to handle hard things, but it isn’t real.

This blog is going to make my last one seem odd, because clearly this has been going on at the same time, but JOY&PAIN. They live together- they are not exclusive of each other. They are basically Siamese Twins. (Or at least holding hands at all times) 

I found out a few weeks ago I was pregnant. It was completely a surprise, (we had been taking steps to NOT get pregnant) but if you know me and my dream of 5 close in age children you know I was quickly excited (in shock…but excited). 
Excited about the chaos of having Emmaus who at 21 months will probably not be walking, or talking much, and a brand new baby. Sure, it is an overwhelming thought, but exciting.

Then this week I miscarried.

I find myself sad, and mad, and thinking what the heck was the point of all of this. I was happy not being pregnant for now, so this all seems so pointless.
I find myself compounding this situation with everything that has happened in the last year and being kind of a pitiful baby about things.
I spent most of an evening, and a good part of Wednesday bawling my eyes out. 
   --not only for this loss, but for a lot more than this. For the loss and frustrations I have felt in the last year. For this baby I will not meet on this earth, for my smiley blonde haired chubbs who has battles to face that are just unfair, for those around me who can’t seem to catch a break either.  For the brokenness of it all.
I do have an overwhelming peace about this loss, but it is still that, a loss.

My sister in law miscarried last week (I know bad week for the Ballews) and I found a print to order for her. It said this-
And to think, when their little eyes opened the first thing they saw was the face of Jesus.

I just can’t get over that.
It gives me hope. The hope of knowing someday this broken world will end and I too will be face to face with Jesus. (And my sweet little babe) But we will both be WHOLE and the sadness & hardship of this world will not exist.

As for now. I’m kinda mad, and kinda sad, and the hardships of the last 15 months seem very magnified.
But I have hope.


 I know what I'm doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for. Jer 29:11

Thursday, August 9, 2012


A lot has been happening around here this week. And I won't get into all of it in this post...but I do want to share a couple of fun things.
First- Emmaus has begun sitting up on her own. In a very unique way- but none the less she is sitting up.

She also has started using a process of sitting up, lying down & rolling to get where she wants to go. Yesterday she traveled from the middle of her room to her toy box to get what she wanted.
She no longer is happy in her exersaucer- she wants to MOVE.
And if she isn't happy she will let you know about it. The kid has started throwing little hissy fits to express her dissatisfaction. It is pretty amusing really. Only funny cause it is easy to distract her and get her in a good mood again.
Biggest thing this week?! She waved at me! She has been understanding waving & clapping more & more. I was waving at her and she picked up her chubby little hand and opened it and closed it at me MORE THAN ONCE! AKA the girl waved! I was beside myself with glee. (Still kinda am-been trying to get her to wave ever since-she just looks at me like I'm dumb) 

We've been busy enjoying Olympics (every minute of every day pretty much). I will be kinda glad when it is over. So I can get back to no TV day time and reruns of FRIENDS at night. 
Hope all is well in your homes-

Saturday, August 4, 2012

Storms Brewing

Something is brewing with Emmaus and I don't like it. She is off. Her mind is off. She is grumpy- which never happens, she is sleeping all the time. She's off. I don't know if it's meds, or seizure activity that we are missing, or a big seizure brewing, or even something simple- things I tend to over look. But I feel like we are in the eerie grey calm that happens before a huge storm. I hope I'm wrong. I hope it is just teething- that would be AWESOME! I feel like thinks have been really good lately, so I am thankful for that good stretch of time- and I am hoping this is something simple and not a big deal, but my gut tells me to watch her like a hawk.

Sometimes I wonder what lessons we are learning here. 
Are we learning resilience? Or survival? Or that things could always be worse? 
Are we learning dependence on something/someone greater than ourselves? 

It just seems that life's lessons are being taught somewhat harshly lately. 
To us, to others around us, to friends, and family. HARSH. 
It is wearing, and heartbreaking, and it seems to be never ending. 
I know it will end. I know IN THE END there will be no more sickness, or death, or pain. 
And that gives me hope. It gives me strength. 

I am thankful for that hope tonight. I'm also hoping miss Emmaus wakes up herself, and sunshiny as ever! 


Wednesday, August 1, 2012

The Sweet Stuff

Our lives are not perfect. And in this house there has been lots of heartache and growing pain in the last year. However, the sweet stuff is far better, far lovelier than any any of those difficult things. 
The sweet things. 
That is what our memories are made of.

Incredible dinners with dear friends. 

The secrets exchanged between the sweetest little friends that there ever were. 

A sweet little head tilt that surely she inherited from here mama. And the biggest blue eyes she got from here daddy. 

Sweet love between the little Chubbs and her parents.

Learning how to do things like stand- and the joy and pride we feel when the she succeeds after so much practice.
 She is even proud of herself. 

I am overwhelmed with the sweet things.