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!


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Comments

  1. can I just say although my daughter does not have TS, I understand how you feel about having a horrid sleeper. when people ask when she started sleeping through the night, my husband and I look at each other and laugh. she is almost 3 and although she is better than when she was younger, she still has her moments. we have also adapted the "as long as you are in your room and not harming yourself or destroying your room beyond repair we are going to sleep and you can stay up and play" philosophy. anyway, I am so glad to hear she is seizure free! Merry Christmas!

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