Monday, December 31, 2012

Fav 2012 photos

Just a few of my favorite pics from the year (I only took them from my blog-cause if I went from our iphoto account there would be 768,564,342 pictures posted!)



Sunday, December 30, 2012

Not your typical resolution

Tonight at church a worship song we sang had this line repeated over and over
"We wait for you to come and show your glory here tonight"

As we sung the words, and the music swelled and the voices of those around me grew stronger I couldn't help but melt into those words and let the phrase penetrate my soul.

In our life nights are a very difficult time. A time we dread really. The unknown sleeping patterns of our sweet girl puts fear into our very hearts- dread into the core of our beings.
A wise woman we know asked me if we were having marriage problems, when I shared it had been a bad week- at first I said no- then I said "Well i guess you can say that, because at 4 in the morning when your toddler is screaming and refusing to sleep it quickly turns into a marriage problem"

Of course around this time of a year people think of things they want to change in their lives. Habits, attitudes, goals for self improvement, weight loss, ect ect ect.  And while I am not a big of resolutions cause I never keep them-
what if
-instead of cursing TS for the trouble it has caused in our lives-
-instead of feeling like an inadequate parent for Emmaus in the middle of the night cause I am furious she is awake (again)
-instead of feeling ungrateful for the blessings we have received this year because I am constantly complaining about my kid being up for hours at a time overnight usually fussing.
-instead of fighting with my husband in the wee hours of the morning.
-instead of barely making it till dawn.

WHAT IF- I can just align my heart to our worship song at church tonight.

"We wait for you to come and show your glory here tonight"

I know I will still be tired, the nights will still be long. I will still hate TS and the havoc it wreaks on our lives- but I think choosing to know God cares even at 4am. That he is working even at 4 am. I think that maybe this "realignment" can change my nights into at least less dreadful times than they are now- if not even times of joy. Extra time to love and pray for my child to wait expectantly for Gods glory to come.


Thursday, December 27, 2012

Someone missed the "Be of good cheer memo"

Well our Christmas started something like this on Sunday with a sick feverish baby. 

By Christmas Eve she was feeling much better and excited to be with family, 

And open & play with her new gifts.
(Saying open may be kind of a stretch- she liked the Bows- that was about all the opening she did)

Christmas morning was a different story- she was back to feeling not so well and didn't understand why we thought wrapped toys would be at all appealing to her.
(She missed the "be of good cheer" message) 
At some point I snapped this picture- which is between frowns- and sobs- But non the less cute- and a fake "Happy Christmas Morning shot"

She quickly realized that underneath the wrapping were books- The girl LOVES a good book.
Apparently she also loves a good purse- 
And here she is after her second round of opening gifts-passed out among the Chaos.

This year we did christmas a little differently- We stuck to our budget, gave smaller gifts, gifts with meaning, received less- and it was AWESOME. Some still went a little overboard- but that happens. It was wonderful this year to focus on the reason for Christmas.
Currently I am watching Emmaus crawl across the floor to retrieve a Justin Bieber ornament she pulled off the tree. J.Biebs- inspiring girls across America- whatever it takes to get her moving!
A belated Merry Christmas to you all.


Sunday, December 23, 2012

Barbie's Dream house, snuggles & gremlins

We have been in full christmas mode around her. And I truly have (for the most part) been enjoying the season this year! There is something so cool about sharing christmas with your child. Its just a magical time of year- and one that brings so much promise and hope.

Emmaus is a huge fan of the newly cold weather and loves getting bundled up to go outside. She even loved her mittens! (I am sure she got annoyed of me saying "You lost your mittens you naughty kittens- then you shall have no pie") 
She has become the ultimate snuggler. Giving hugs and kisses whenever she is picked up. Its so funny cause its is love that is full of unbridled joy. She dramatically throws her arms around our necks and just snuggles in. I melts our parent hearts. 
(She is still seizures free-ish. She currently has a little virus and maybe had some little seizures this morning. But that is par for the course and truly to be expected when she is sickly.)

This weekend Dan and I went to a Christmas party at Barbie's Dream house. Okay truly it was just my friend's house- but it is a real life Barbie Dream house and if I wasn't married I would move in ASAP and soak in the pink girly-ness of it all. 
My hubby is currently trying to keep his head warm via face hair.  I guess when you can't express yourself by hair style you go with beard style?!

We are learning a lot about Emmaus now that she is developing so quickly. She has always been a HORRID sleeper and honestly 18 months later we just have turned her crib into a huge toy box with a small space for her to sleep and call it good. She wakes up- we turn on her light and she plays the night away. And we go back to bed. 
However- we have been learning the lesson of routine and how important it is for our sweet girl. We tend to want to parent flexibly and expect her to be able to adapt- however- realistically even if she isn't seizing she still has TS. It tends to cause extreme spikes in behavior and every single mom I know who has a kid with TS says routine is a must to avoid these issues as much as possible. 
We recently took Emmaus to my parents house so we could go to Barbie's christmas party- and then picked her up hoping to bring her home and put her back to bed. Which turned into an all night fiasco of her screaming like she was demon possessed for 4 hours- Dan agreed some where about hour 2 that we NEVER would do this again.  I ended up crying in bed cause I felt so overwhelmed by being the mommy of a girl that requires so much and she ended up falling asleep when Dan took her on a drive. (He is a really good daddy)
She soaked through her diaper on the drive and instead of risking waking her up to change her we opted to stick her soggy butt in bed and let her deal. And she slept peacefully for 4 glorious hours! 
I guess its kinda like this...
Here is Emmaus with a routine....

And then here she is without one. 
(And I am not kidding when I say this is how she was that night)

I know God chose me to be her mommy- but sometimes I feel like I am ill equipped for handling her special circumstances.  Especially when she resembles that monster above instead of the sweet little girl I know is in there. 
Well we are off to do some more festive christmas activities. Hope you all are enjoying the season and the promise of hope it brings as much as I am!


Monday, December 17, 2012

Lost shoe and army crawl

I really can't fathom that Christmas is 8 days away. The last half of November and December have pretty much slipped away from me completely. I have a honking to-do list and several gifts left to get/make before this weekend.
I started my christmas shopping last Thursday with a trip to the mall that truly was a loss overall. Literally. One of Emmaus' Stride Rite shoes that we use for her physical therapy fell out of the stroller and we COULD NOT FIND IT! We looked everywhere- traced our path, called all the stores we were in multiple times this weekend and still nothing. However, my grandma gave me money to buy her a new pair for christmas. It was frustrating cause of all the shoes we could have lost we lost the 48$ pair that we HAVE TO HAVE for therapy. Sigh- I guess that is life and in the grand scheme of things not a huge deal.
Anyway- enough of me lamenting about a lost shoe.
Happy girl at her friends "Dolly" birthday party
Miss Emmaus started army crawling this weekend! We are so excited. Forward motion has not happened from her yet and she loves that she could get toys in front of her! I couldn't get a good video but will post one when I do.
She also started pulling up to her knees in her crib- like she holds onto the side rails and pulls up so she is kneeling. Guess we need to lower the crib FINALLY!

First candy cane that I ate most of...
We had a fun weekend celebrating birthdays, seeing santa & just relaxing. I was a bit under the weather for most of it- but it still was a fun time!
I'm off to soothe my screaming child who is suppose to be napping and hopefully cross some things off my to-do list!


Friday, December 14, 2012

A message of hope on a horrible day.

Once about 8 months ago I lost faith. I lost hope. It was really a series of events and fear. 
There was a lot of fear involved. 
A young mother who is in our community lost pretty much everything. Her baby and then a few months later her husband to a freak illness and I was just overwhelmed by the misery of it all. 
And I was very afraid- afraid that if someone is given so many trials- maybe we will be given many as well- we already have a few on our list.  I didn't understand how God could just allow things to happen- horrible things- multiple things. 
Today again I am distraught by the state of the world. The brokenness. The saddness. The Loss. I hate that we live in a world were as parents we cannot send our kindergardeners to school without fear of them not returning to us that night. 
However- this time I am not hopeless. I have faith. Because I have learned a valuable lesson in the last 8 months. I have learned that the God I know and love created this world as a perfect place. That he created it to have community with human kind- but God gave us free will- and we chose "knowledge" over God.  He did not intend this brokenness, this sadness. This death. 
So yes this world is broken- it is so sad and beyond jacked up. But God sent his son Jesus in the form of a baby to be a human sacrifice for all that sad, crazy, evil the world is full of. Even though human kind chose knowledge over God- he still wanted to rescue us! 
And JESUS WILL RETURN. And while I can hardly stand the crazy, in this world. I can hardly stand that my very own daughter has challenges beyond what is "fair"- that people die, and people fail us. 
I know this-
God is faithful, 
He is good & 
He is coming back to rescue this world. 

So tonight as I tearfully write this post- overwhelmed by the state of the world. Heartbroken for the lives lost & the parents who have lost their most precious babies- I have hope. 
-Here it is from my daughters bible-

I pray this brings you hope- because it surely is truth. Whether you believe in God or not I promise he believes in you and wants you to know this hope tonight.


Monday, December 10, 2012


I had a little epiphany last night at church. I saw a little boy crawling across the floor and it hit me! Emmaus has never been around a kid that is crawling- or at least not while we have been teaching her to crawl.
She does everything by imitation right now. She imitates our noises, she laughs when we laugh, she dances when she sees dancing, (I wish I could say she sleeps when we sleep) but my point is that I need to get her around some crawling kids! She is soooo close! And I think if she could just watch and see she may actually do it. Just a thought.
But then of course I started thinking about other things I want to be imitating for her. I  have been thinking a lot about how as parents we teach Emmaus about Jesus. He is such an important part of our lives and I know that her sweet little heart probably will not gravitate towards doing good, and following the Lord on it's own. (Cause we all tend to go astray) So how as a mommy do I teach her!? Though imitation I guess, through telling her about the goodness and the faithfulness of the Lord. To teach her to Love others really well- what a challenge, but a good one at that.
(We are also trying to teach her how to go to bed right now- the good old cry it out method- its killing us!)
Man this mommy thing is hard! But well worth it!


Friday, December 7, 2012

A little rant on Enough.

Why do I have 4 Ipods?! I mean seriously why? I originally got a 30g Ipod you know the old school one without the touch screen. Then I got a shuffle that was more practical to run with. Then I got a Ipod touch cause I couldn't live without it- and now I have upgraded to the iphone. I have thought about selling my ipod touch MULTIPLE times but haven't cause I might "need it" sometimes. ummm....okay.  (Cause that is never going to happen). I take my phone everywhere and use it instead and I use the old 30 gig at home cause it has the best music on it that I don't have anymore.

My closet is full of clothes. That I NEVER wear. Seriously- never.
Emmaus has more clothes that she needs. Just cause I like to buy clothes. (And its easier to buy them for her than for me!)

We have so much. We have enough- yet my american consumeristic heart always wants more. Pre-baby, two full time jobs, no house payment- all of these things were affordable- we never missed the money.
But now- we have a baby, a house, 1 full time job and one part time one & lots of expenses.

We have used Dave Ramsey's financial plan since we first got married. It has SAVED us financially- We don't have credit cards, have paid off dan's school loans, bought his car in cash and live within our means we truly have no debt besides our house and my car which is almost paid off.
However it did nothing to teach me about ENOUGH. 
Why is my appetite for stuff so big?

I have an overwhelming urge to purge. To get rid of stuff. Cause man it fills up our life, our space. Our hearts.
I am so excited for Christmas this year cause there is very little that I want, and even less that I need.
I went to look for Emmaus the other day and didn't find a single toy to buy her. She has so many toys. And the one thing I asked her grandma for was a Little People Nativity set. Because with the way this kid is loved it will be impossible for us to teach her that Jesus is the true reason for Christmas. And that toys aren't the main focus- I mean I see how it can be confusing! Cause she gets so much stuff.

I guess what I am saying is this mama is going to work on paring down. On having a heart that is full of life and not longing for the newest and greatest thing. On taking good care of what I have instead of just buying more.

Anyone want to buy an Ipod?!


Wednesday, December 5, 2012


Today while at Walmart of all places I realized how abnormal our normal is. (Usually that is the place I go to feel completely vanilla and normal).  While checking out the lady behind us was talking to Emmaus and asked what happened to her head. To which I responded my standard "She had brain surgery a couple of weeks ago" but I guess that wasn't enough of an explanation and she asked, "but what happened?" and then I explained she had a tumor removed. And then of course I am sure you can imagine the face she made to me- as I'm sure she envisioned bald sick kids fighting for their lives against cancer. (Which clearly is not the type of tumor I was talking about, but lets be honest cancer is where my brain goes first too). People have been so kind and respectful of us during Emmaus' scary looking phase- we have heard some horror stories of things people say, but we have been very lucky I guess.
Anyway- Point is- Driving home I was thinking about how ABNORMAL our "normal" is. People who are very close to us or my friends from children's mercy who see much worse that what we handle every day seem to think our lives pretty normal- but in reality to a lot of people (aka those that don't have a kid with chronic illness, or spend their days working at a children's hospital) I guess some of the things we handle seem kinda weighty.

Speaking of normal- We are getting used to having 3 participants in our family- not just 2 (dan and I) and our little spectator. Emmaus now definitely a participant she has an opinion, a "comment" and wants to be a part of whatever we are doing.  She is into EVERYTHING. Today she spent about an hour un-decorating our christmas tree. She wants to eat what we are eating, if she is too close to the table, or a shelf in the store everything will be on the floor. She laughs when we laugh- she knows when she is funny. It is pretty much impossible to keep her entertained unless the dog is around for her to chase- And we are so thankful. (I mean she seriously just started fussing cause a commercial came on pandora- instead of a song...WOW)

The faithfulness of the Lord astounds me. And we welcome a little bit of "normal" in our lives. 
(Although I am quite sure swinging outside in short sleeves and no shoes in December is quite abnormal- but we will keep this weather too!)