Tuesday, June 26, 2012

ONE

We made it! It has been a whole year since miss Emmaus joined us and changed our lives forever! I am so thankful to have that smiling little chubbs in my life. She is a true joy and has taught me more in 1 year than I have learned in the 25 prior.
At one year of Age Emmaus is sitting, laughing at everything, and hardly ever has a grumpy moment. She loves to jibber jabber and say Da-Da. She is sleeping better these days- most of the night and a couple hours during the day. She rolls everywhere- but isn't crawling yet. She loves most foods- except eggs. Don't give the girl eggs, she won't eat them. She has seven teeth and bites hard! She likes to swim at the pool and play in the bath. She is starting to put weight on her feet when we use her braces! Which is a HUGE improvement and change!
Here are a few(bunch) of my FAVORITE pictures from the year







Picture overload? Yeah- Well sorry- The kid is cute
Happy Birthday baby girl!
Love, 
La


















Sunday, June 24, 2012

Pain and Joy

Today we had Emmaus' first birthday party. And while I thought I would be sharing all the great pictures of her beautiful party and wonderful memories, tonight something else is on my mind. (I will share the pictures and memories tomorrow or the next day) But tonight as I sit in my room I am drawn to share something else.
It has been a hard year. A year full of amazing joy and much much more challenge that I thought I could handle. But tonight I once again am overwhelmed by how beautifully and seamlessly joy and pain can live together. Today we got to celebrate Emmaus. The beautiful life she has, the joy that she brings to so many and what a blessing she is in our lives, yet at the same time milestones are hard for me. I am painfully aware today (as I will be on tuesday) of where my sweet girl is verses where she should be. I am sad that she has so many struggles, I am sad that she has so many ahead. But at the same time I am so thankful for her, and I had a fun time celebrating her today. My best friend and her husband and their little girl stayed after the party today. And while we played with her daughter and watched them interact- I was so sad for mine. Or maybe I should just say I was sad for me-because that probably is more honest. Yet at the same time I am so proud of what Emmaus is doing, who she is and how much she is changing and growing. Joy and Pain- so intertwined I can hardly separate them.
I am thankful to have good friends and their great kiddos that love us and Emmaus so well. It was a wonderful day filled with so much joy and so many smiles.
Emmaus loves to smile. Brings joy to the mama's heart.

Love, La

Saturday, June 23, 2012

Wedding

We went to a wedding last night. It was probably the best wedding ceremony I have ever been too. Completely unorthodox, but so joy filled it was bursting at the seams. As the music begins to swell and  the bride begins to walk down the aisle I always am always overcome with such excitement it gives me butterflies.  Last night was no different- although she walked into a worship song that had so much power it was like she was the bride of christ- coming to meet her savior. It was very cool. Anyway- in the midst of all of this I began to cry (of course).  At first it was just because of the wedding...then it turned into something very different. That damn fear monster. I suddenly had the realization that my sweet baby girl may never be doing this. That the severity of her TSC may prevent her/us from these joyful milestones. As I was desperately trying to get it together before it became obvious something was wrong I realized this was the first wedding we had been to since having Emmaus. Those life events that I am fearful my daughter may not get are hard the first time.
The couple chose to start the wedding with some worship songs. And it was so meaningful to me. It really helped heal my heart in that moment. (My heart is always a healing in process- but it began to shrink the fear of that moment).

A couple lines from the songs that really stuck out to me.

"You are light, you are light when the darkness closes in"
"You are peace, you are peace When my fear is crippling"
"Thy own dear presence to cheer and to guide. Strength for today and bright hope for tomorrow"

I am so thankful to be living a life that is not controlled by fear. That even though I am dwelling in a very broken world full of sickness and disease it doesn't matter- because my hope is not in this world.

Just like this beautiful wedding I am so excited for the day I am the bride walking towards the bride-groom Christ. In a place where no sickness can touch us, no sorrows can sadden us and life is as it should be.

Love,
La

Thursday, June 7, 2012

A few tid-bits about my life...in pictures

Emmaus is learning to hug. It really is the cutest thing ever. She wraps her chub arms around your neck and nestles in, or grabs your face and pulls you close. So cute. Melts my mommy heart! 
And then sometimes it looks like a choke hold...Especially with "baby Zim" 

 My daughter is VERY talkative in the middle of the night and early in the morning. 
And her hair is always rockin!

A good friend of mine came over and watched Emmaus all night so Dan and I could sleep...
Yeah- best present I have gotten in the last year- possibly ever!

I got tickets to go see this guy in concert in October...Ummm yeah, I am super excited...
(Along with every teenybopper in the KC area)

 And last but NOT least. Emmaus is SITTING!!! She's changing so much and it is so exciting! She can't sit for very long, and she will fall straight back and konk her noggin, but she is getting better every day! I am so proud of that Chubs! 
 Love,
La


Tuesday, June 5, 2012

Learning

A couple of lessons I am learning
-Sleep is overrated...but makes me an overall nicer person.
-If your spouse says something really mean to you in the middle of the night-forgive and forget (please babe?)
-Do what you love in life...and if you don't love your job find a new one.
-Don't set out to make a difference. Just do in your heart what you know you should and difference will be made
-When people give you advice they are just trying to help...even if it makes you feel like they aren't listening

I guess that is all really.
AND
I love my new job. It is the best. Incredible Birthdays.
I'm so glad we made the TS video. People are finding hope in it- especially other TS families.
I'm so tired...and MEAN to the hubs at 2am when I am tired. (poor hubs) (please pray for Emmaus' to sleep if you are a praying person- she's developing so much on her meds, but sleeping SO LITTLE!)

Love,
LA




Friday, June 1, 2012

Our Story

As I mentioned a few posts ago we are starting to raise money for the TS walk in September. We made this video to tell our story, raise awareness, and bring research funds. 
Please take a few minutes to watch our story. Please share it on your blogs, fb pages, twitter, ect. Thank you! 

To donate or Join our TS walk team go HERE

Love, La