Monday, May 28, 2012

a year since TS

I realized this weekend that it has been a whole year since we have known about Emmaus having TSC. It has been a year full of immense challenge and incredible joy. I never imagined that our life would look like this, that it would have the type of challenge caused by raising a daughter with a chronic illness. But I also never knew the great joy that comes with a special needs child. Or the huge victory we feel when she learns to do new things.
 I do wish I could go back to the day before we found out and just sit in the bliss of "life before" for a moment.
To this day. And this moment.

I have learned to ask for help this year. To rely on community, to slow down and enjoy the small things. To choose joy. Its been hard. But very worth it.

Sunday, May 27, 2012


You turned 11 months old yesterday...which means I am in full 1st birthday party planning mode! (I love planning a good party!)

It's been a long month. I'm not gonna lie. 
While you are generally a happy girl, you have gained a lot of personality this month. And are much more quick to tell us what you think about things. 
Due to a med we have recently added you have developed a HUGE amount this month. Reaching for toys, playing, rolling to get things, being more vocal about likes and dislikes. Almost sitting. You are very interactive with us and you especially like other kids. 
However, also due to this med you have stopped sleeping. You take two good naps a day, or sometimes three if they are really short. But you are up for hours at a time in the middle of the night. You are happy. Just wide awake. So we get up and play-cause we would go crazy trying to get you to go back to sleep. 
Your "normal" sleep pattern at night is you sleep from 9-12:30-1ish? and then you are usually up till about 4 and then you sleep till 6. Or sometimes less that than. Rarely more. 

We are so proud of how you are changing and growing. We find so much joy in your development. And while we are tired. You are worth every tired moment.

You eat EVERYTHING. And like everything really. 
 You are a joy sweet one.
I can't believe you have been with us almost a whole year!


Saturday, May 26, 2012

TS walk

The TS walk is in just under 4 months. So we are starting our fundraising campaign now!
Our team the "Emmaus Roadies" is wanting to raise $10,000 for TS research. Please check out the link below to sign up to donate to our team, or to join our team. We are hoping all members of the team will be able to find sponsorship as well to help us reach our goal.

TS research has come so far in the last few years. Huge breakthroughs have been made. Medications are available to help decrease seizures, spasms, and tumor growth that were not, or were less available 5 years ago.
Research effects the life of our daughter, her future. And research cannot be done without funds. We know 10k is a lofty goal. But when it matters to Emmaus' life, to others with TS so much- it is worth trying for!
So join us in walking, or in sponsorship~

Tuesday, May 22, 2012

The one with the art analogy

I had a day off today.  I rested....and crafted. And I ran a few errands.
I mainly crafted (Truly- I mainly took care of the little one, but when she was sleeping or playing I crafted).
Oh be still my creative soul. Some days I just need to create something beautiful.
I think it is therapeutic for me in a way. I am able to manipulate my materials, form them, change them and in the end have a finished product that is excellently crafted. Something beautiful. I control the outcome of my project.
My life is so opposite of that right now. I guess in reality it always has been. But these days I feel I have control of very little- that I am just along for the ride hoping the outcome is good.
I feel like my life is a jackson pollock me it makes no sense, but to the creator it is a perfect work, it is carefully planned.
Funny how beauty can come from both careful execution and chaos.
My soul feels rested after a creative day. (Now lets hope the babe sleeps tonight)

(sorry about the title...I watched a LOT of FRIENDS episodes today!)

Monday, May 21, 2012

Classic "sports movie pride"

The road around here has seemed kind of steep lately. I think mainly due to Miss Emmaus' late night play times (things look much bleaker when we are exhausted).  
But the steep roads make the good times that much sweeter. 
Emmaus is changing and growing so much. And tonight as Dan and I watched her playing, I almost got choked up. It was like something out of a sports movie where the underdogs come running onto the field to play the championship game with a sound track that shows just how far they have come. You can feel the pride...see the pride. 
Tonight we were full of pride as we watched how our sweet little one is changing, developing, how despite the obstacles in her way she continues to push forward. 
"Singing" along with mommy
She is amazing. And we are proud to walk this road with her. 

Wednesday, May 16, 2012


Almost every night for the last several months (and by several I mean all the months she has been alive) Emmaus wakes up at night. In the last few months it is more like she takes two naps at night one from about 9-2 then again from about 430am-7am.  We have tried many many things to try to get her to sleep. 
-Having a later or earlier bed time
-Different bedtime routines
-Bringing her into our bed to sleep when she wakes up (which worked for a little but now she just keeps both of us up too)
-Sleeping with her on the couch (this is so either dan and I can be sleeping. no use in 3 people being awake instead of just 2)
-Rocking her
-Letting her grunt it out. (the kid rarely cries, just grunts to show her dissatisfaction) 
-Feeding her in the middle of the night
-Not feeding her at night
-Patting her back in her crib
Point is...none of those things work. I have mentioned this problem to several friends and we get different advice from everyone....none of those things have really worked either. She is just awake. So we have stopped fighting it. Now we read to her, sing to her, and last night I actually let her play for a while. 

There she is just pounding away at her toy at 3am.

I tend to lean more towards the  "cry it out" parenting method for her children her age, but something in my mommy gut says "just get up with her." (I wonder how it will be with my future children.) I guess because Emmaus is so chill and mostly happy, I don't trust myself completely to know when she needs something. Plus she isn't the best about being able to express her needs yet. So it bothers me to know she is just chilling in her crib for 3ish hours. 
It has truly been frustrating at times and we are definitely tired...very tired. LIKE REALLY TIRED. But let me tell you it is so much easier to get up when my expectation is to play with her for a while, or read to her instead of to try to get her back to sleep. Cause that way I'm not getting frustrated at her for being wide awake. (I'm talking eyeballs completely open, laughing and gibber gabbering away-AWAKE) 

She is truly a mystery to me. I wonder what is like for her? Is her brain going crazy and keeping her awake? Is it a med thing? Is it a TS thing? Or is she just a night owl? Is she tired and just can't sleep? Or really just wide awake? 
I am so thankful she is a happy child (and that she takes good naps during the day). I truly might lose my mind other wise. 
Man this parenting thing sure isn't easy. But I trust my gut. So for now I will get up with her. And I will STRIVE to be joyful in those early hours of the morning- making them a sweet time instead of a hard time.  (And I will fail miserably half the time, but "luckily" I know tomorrow night I will get another chance to choose to love Emmaus well in these difficult moments and be joyful...) 

That's all for now.

“The night is the hardest time to be alive and 4am knows all my secrets.” 
 Poppy Z. Brite

Saturday, May 12, 2012

Mothers Day

My mornings have purpose. I wake up groggy and still tired, but the sweet sounds of your coo’s and occasional grunts pull me out of my fog, gently luring my feet onto the ground to reunite me with my purpose, you. You have started grunting a lot these days. But it has become a sweet sound to my ears. As I enter your room you quiet down, knowing your mama is near. I peak my head into your crib and you shyly continue to play with your fingers, or toes, or whatever has your interest at the moment. I’m sure you wait for my greeting. “Good morning Emmaus”. As soon as those words leave my lips you cast your gaze up and crack the biggest smile. A smile that you reserve for earliest of mornings when we reunite, after a night apart. I say reunite loosely because generally either your father or I have spent several hours throughout the night up with you. You are rarely fussy, just awake and while you being awake sometimes makes us a bit fussy. We try our hardest through our sleep deprivation to be kind and loving and even when we fail you are still happy to see us in the morning.

Mornings are a very sweet time of day for us. You are super snuggly and your hair always looks very bed-head-ish and cute. You have puffy eyes, and binki lines and and all your usual noises are softer, said in a deeper tone. I love whisking you from your crib and heading down to the couch so you can nurse and we can snuggle. I find your smell intoxicating especially in the mornings. The sweet scent of your Burt’s Bees lotion wafts up dancing around my nose with each movement you make. Some mornings I have to will myself to move off the couch, to move out of our sacred snuggling space. But I know to well that if I don’t get our day started we will both drift back to sleep and any semblance of a daily schedule that we have will be lost. We have meds to be given, play time to happen and task to be checked off a To-do list.

You have changed me dear one. You have made my heart mush. You have made me ache in ways I didn’t know were possible and have given me a new understanding of love. A love that will never end, never change, and always be true, a love that no amount of trial, sickness, or heartache could challenge.

You are loved little girl. You are wanted and cherished. You are a joy.

I am so thankful God had YOU make me a mommy.

Love, La

Monday, May 7, 2012

You are doing alright mama

I had a situation this week where I seriously started doubting if I am doing anything right in this life. Emmaus has been having these weird movements and for over a month I have explained them away as "development". And suddenly I was terrified they were seizures, or spasms, and here I am a pediatric nurse not seeing what is clearly in front of me. Good news is, I sent our neurologist a video and he agreed the movements were her learning how to control her body, learning fine motor skills.

But- in the few hours it took for him to get back to me I kinda was in a panic. 
I assessed my entire current life in that time. 
The fact I made only one meal for my husband last week. 
The reality of how hard it is to work AND be a good mommy. 
That my house is rarely clean.
That I often have a to-do list a mile long. 
That I feel called to live in community, but sometimes I trade that for much needed rest with my husband and daughter.
That I haven't worked out in a month.
That I often am a mediocre friend, and honestly pretty needy right now.
That I have a child with a very overwhelming and sometimes serious disease, that I am not as faithful as I should be about doing her physical therapy activities every day. 
I thought about how I desire to have a big family, a bundle of kids, but I wonder how that will impact Emmaus, how on earth will I care for all her needs while having and caring for her younger siblings?
I wondered why God chose us to walk this road. 

We were getting ready to leave to run errands while all this is running through my head. As I was buckling Emmaus into her car seat she caught my eye, tilted her head, and smiled the biggest smile up at me.

I stopped my self-induced guilt trip that very minute. I thanked her for the smile and for reminding me I am doing the best I can. I may have shed a little tear. And I said aloud. "Laurisa, you are doing a good job, you are doing the best you can".

To my detriment I am a planner, a perfectionist(although I often deny this). And my life just doesn't allow for that. In the last year all my plans have been derailed. And it has been better because of that. So I am choosing now to stop the self guilt trips. Its called grace- and I must learn to have it for myself.

So I just wanted to say to all the mamas out there that feel all those aforementioned things. To the mamas that feel guilty for not being perfect or even close to it really. You are doing a good job. You are doing the best you can.

I guess that's all.

Thursday, May 3, 2012

New News.

First my toes are this color. I am just a little obsessed. Thank you target for $2.49. 

Secondly I am making a bit of a career change. In the last few months it has become increasingly hard for me to work at Children's Mercy. The people I work with are great, but I am just not able to emotionally handle everything I see there very well. I hope someday I will have a better grip on our  journey with Emmaus to be able to help people that are going through the same thing we are. And I do that some now, but at a huge emotion toll to myself. I want to build relationships with people and share our journey, tell them they are doing well, encourage them over the long haul... not briefly while they are inpatient on our floor. And working on an impatient floor doesn't allow for that very often. 
So I am taking my hippie self over to The New Birth Company to be a staff Rn for them. I will be working a few clinic days a month and then taking call for births. I will remain working PRN (as needed) a few shifts a month at children's for the time being. 
As you know if you have been reading for a while I believe in natural birth. I think that *most women's bodies are fully capable of laboring and giving birth without a whole lot of medical interventions. I believe in women's health both during, after, and outside of pregnancy. I love that this company is transforming birth both in the U.S. and all over the world. 
So, needless to say I am very excited to be joining their team. 

*I want to comment on the MOST word above. I believe birth is a beautiful thing regardless of how you choose to have your baby enter this world. If you choose hospital, home, water, epidural, induction, c-section, birth center, midwife, doctor, ect. That is a personal decision. And I respect the one you make. However- I also believe there is so much FEAR surrounding birth, that birth is considered an illness or emergency almost. And in all reality it is usually a very normal thing. A lot of the "emergency" comes from the medical interventions.  Obviously (even in my experience) not everyone is qualified to have birth outside of a hospital. 
I know most of the people reading this thing I am crazy- but having my daughter naturally was an incredible experience. It was amazing to get to work with my body to have her enter this world. It doesn't even stick out as a painful experience in my mind. It was work. But it was so much more than entering the hospital, and having a baby. It was spiritual, it was challenging, it was life changing. 
You aren't going to find me judging you for the way you birth your babies, but I also won't hesitate to tell you mine, and how labor & birth are not something to be feared.

oh my. looks like i need to step down from my soap box. i promise this won't turn into a all natural hippie blog. after all i'm not really that granola. just a bit on the natural side. 

That's all the news I have. 
Love, La

Tuesday, May 1, 2012

This and That

Man I know I said this a few posts ago but things are NUTS around here! So much is changing! It is a good thing, but just leaves very little time to blog. 

First things first.
Miss Emmaus turned 10 months old last thursday. She is growing and changing SO MUCH!  
Some of her favorite things right now are her lamaze mermaid doll "marina", saying Da-Da, being awake in the middle of the night, laughing out loud, protesting when she is unhappy, snuggling, listening to me sing then "singing back to me", And almost all food. 

Here is a pic of her practicing sitting in her laundry basket-best therapy tool ever.
And one of her talking while eating her hand. Yep she is a multi-tasker like her mama

We moved into our new house last week. We pretty much love it. 
 And the home improvement projects have already begun

Fireplace/bookshelves before....boring beige, matching the walls

 And after. 
Really makes it pop huh! the TV will eventually go over the fire place where the picture is hung. 

So many more exciting things are happening. Stay tuned for more fun details to come very soon.

Love, La