Every time I feel like I am doing "okay" it becomes very apparent that actually I am not. Our trip to St. Louis has given us lots to think about. We will find out tomorrow what the team of Doctors think is the best plan for Emmaus and go from there. However, I am very confident based on our discussions with the doctors while we were there they will say surgery is a good idea. I thought I was pretty okay with this plan. That is the basis of what I am about to write.
Tonight we had this church picture thing. Our church is young. 3 years old (or 4 I forget)- it is mainly younger people, couples starting families, ect. So tonight we planned to get the "first generation" of kids together to take a picture. We planned to go before church started to get the pic. It was scheduled for 430 but I didn't get that message so we missed it. One of the dads I hardly know let me know we missed it and said "We will take one again next year". I said okay no big deal (cause really- it's not). And then I started bawling. Cause my thought that immediately followed his statement was "Emmaus might not be alive next year for the damn picture".
Yes I just said that, or admitted that I thought it. I hadn't really processed THAT fear of her having the surgery. I mean brain surgery is a big deal- I think about infection, complications like bleeding, about it not being very successful, about the time we will need off work, about her being in pain, but I haven't allowed myself to get to the D word yet. Death.
Shakes me to my very core.
Once I started crying then of course I couldn't stop. Then I couldn't relax- then I gave myself diarrhea cause I was freaking out. (Wow the D word and then talking about diarrhea in one post)
I sure hope thats why I am having diarrhea and it's not the raw cookie dough I ate earlier...the package specifically said "DO NOT EAT RAW DOUGH"...I disobeyed.
We left church early because I am watching two other little ones this weekend and while they did very good through the music they started to get restless during the service (okay truth be told one of our iphone batteries died and so they started fighting over who got to use the one live iphone). ANYWAY I was sad to leave but on the way home Gangnam Style came on the radio (if you haven't seen this you tube video check it out- HILARIOUS) Emmaus loves this video and always claps and squeals with joy during it. All three kids were dancing and singing in the car. It was amazing. It was joyful. It made me glad that we left early just because we heard the song. Because for a few minutes we could be in the car forgetting about surgery, TS or seizures with three singing, dancing beautiful babies. And two adults that were enjoying every moment of it. (I am pretty sure that song is about being a lady during the day and a freak at night and even thought it is in Korean it definitely has "Sexy lady" in the chorus multiple times- oh well win some, lose some)
Point is I am freaking out a little about surgery.
Guess that is probably normal.
Tuesday, September 25, 2012
I'm a solver, a thinker, a do-er. Not because I feel like things need to be solved. Or thought through, or done. Just because it is in my nature to do those things. I do them without thinking. I step on peoples toes unknowingly, offend on accident, do a whole lot of planning and thinking, and solving that is probably unnecessary.
And then I had Emmaus. I cannot solve her problems. I cannot make her stop seizing-
(OR MAKE HER SEIZE as we are finding out this week).
I cannot think enough about the decisions we are facing with her to ever make the "right" decision.
|Getting the EEG leads placed on her head|
I know she needs me to DO more. But despite her special circumstances, I still have to work. So I do what I can.
A lesson I am learning not so gracefully.
|Always a happy camper- unless she is stopped up-|
This last week when she was sick and inconsolable I cried a lot. Cried cause I had to be at work when I knew I should be with her.
Cried that she is my first baby and my heart wants many- but her challenges make that thought seem impossible, and daunting.
Cried from the injustice of it all (I know that sounds so dramatic-but it truly is how I was feeling). I cried because I have a 15 month old who will need me for a life time and I am already exhausted. Sure we have good days, and bad days, but baseline I am exhausted.
|Pet therapy- I am trying to convince my mom to do this with one of her dogs.|
Today a verse from 2 Corinthians has just been in my head, in my heart.
"Where the spirit of the Lord is, there is freedom"
Freedom from exhaustion, from seizures, from sickness, and TS, from dreams that seem distant, and hopelessness.
FREEDOM. Doesn't that sound lovely. I can feel the tension leaving my shoulders as I dwell on that thought.
|We can't use our computer in the room and so we watch netflix on our phone and text each other- cause we can't talk or she might wake up LOL! (or its not really funny-but I think we are so tired all we can do is laugh!)|
So the stay is going well. Sorry for the random pictures in the random post. But I had to get out the room and blog.
Things are going well here. We need her to have a few more "typical" seizures. So we can get a good picture. Dan and I both have to work on friday so please pray for those to happen soon. We are majorly decreasing her meds and she got an IV just to be safe incase she starts seizing a lot without them. Pray she seizes more so we get a good picture and they can make a good surgical recommendation.
Sunday, September 23, 2012
So that last post really should have been titled LITTLE SCREAMER.
Cause it wasn't really crying it was screaming for LOTS OF DAYS IN A ROW.
We ended up in the ER on Friday night at 230am.
Turns out she is constipated and very gassy- gas pain truly hurts so much so I now understand the screaming.
All the white below her ribs is poo.
(She was pooing daily so I never thought of constipation as an explanation for all the screaming)
They did a couple things in the ER to help her out and she is back to her old sweet self.
(Please never come back crazy screaming version of Emmaus- Mommy can't handle it!)
Speaking of screaming and hosptials! We head to St. Louis this afternoon to be admitted to St. Louis Children's tomorrow morning. This is part of us deciding if brain surgery is an option. She will be hooked up to an EEG and video recorded for 48hours. This will show if all the seizures she is having are coming from the same tubor and if it can be taken out. It doesn't hurt, but she has never liked the leads going onto her head much.
Then she will get a fancy turban to wear for a few days!
She has had the short version of this experience several times (pictured above) but this is our first hospital stay for a long version.
Her meds have been working well and she has not been seizing lately and well for once we want her to. We decreased them and today she had her first seizure! I have never been so happy to see that girl seize. (Twisted sounding I know). We are hoping for a couple while we are there. Just thought I would update so my next post from a hospital room wouldn't freak people out.
Wish us luck with our teeny hospital room, cafeteria food, and hooked up child in the next few days!
Friday, September 21, 2012
My child has pretty much been crying since Tuesday. Well I guess more accurately since midnight Thursday morning. She was grumps all week and now she is just mad, and angry, and I am guessing sick.
And getting 4 teeth. RUDE teeth...Just RUDE
It used to be if we held her she would stop crying. And now she is just crying. Its gonna be a long day around here.
|This is back in the "if I hold you, you won't cry stage"|
she is also rocking a "flock of seagulls" hairdo
In another note- did anyone else get the I phone upgrade software? Anything you love about it so far?
Just curious- trying to find something to occupy my mind so I don't go crazy with all the crying.
Also- 'Call me maybe' so frickin catchy- and annoying when it gets stuck in your head.
(P.S. Parenthood really is wonderful (and hard) even with this crazy crying- and yes she has been to the doctor.)
Well- better get back to the crying.
Saturday, September 15, 2012
There are times when at 3 am I cannot help but get up and write. My spirit is so on fire with the thoughts in my head and my mind will not rest until my fingers dance across the keys of my computer and type them out.
Tonight is one of those nights.
Today is a day of hope for us.
Where we will gather with our friends and families and walk for our little girl.
We will walk because at 15 months she cannot yet.
We will walk because we know there is hope.
Because Research matters.
Because Tuberous Sclerosis Complex is a diagnosis she has... but not a limitation on her future.
I am excited for the funds that we have raised that will go towards research. Towards finding a cure.
This morning, I am already overwhelmed with the support and community we have, that has held us up so well through these trials.
This is our story.
You can donate HERE.
I don't really care if you donate, just wanted to share the link incase. I would however like for you to share our story.
Our story is a story of HOPE. And in this world there is a shortage of hope.
If you have social media, or a blog or a friend share our story today. Post our video, link back to this blog post. Just today- Share Emmaus' story. Emmaus' hope.
We have not walked this journey alone for a single day. We knew we would need help along the way. Today is a physical representation of our ever present support.
Of our journey as we walk THE EMMAUS ROAD.
Wednesday, September 12, 2012
Hello All! Today I have a guest blogger from
I am excited to be sharing my blog space with Allison today! Go check out her blog and her awesome picture taking abilities. I love how Allison captures daily life through photos, and how she experiences and embraces the challenges and love that come with her growing family.
My name is Allison and I blog at Life with the Frenchs. I love sharing my random dailies, photography, and, occasionally, a deep thought or two. I just had my third little baby a few weeks ago and am loving every minute learning and growing along with the littles, alongside my love. Feel free to poke around my blog and decide to stick around!
Laurisa, love getting to share readers with you! I love your humor and perspective on life and always look forward to your new posts! Emmaus, love her name, love her pictures, love her even just through the bloggy world!
See, we all, somehow, some way, share something. Something we all hide and suppress and remember how much we want to forget. We've all had that moment that lasts a lifetime, the eternity second where disappointment, disillusion, discouragement collide as a swelling tidal wave of rejection. Without reliving, without returning, we can all place ourselves back there too easily. It's quite simple.
I have struggled for over ten years now with a reoccurring theme in many nighttime dreams. There's some things in the past that although are trivial, dim, vague recollections in the sunlit day, become disturbing, unsettling hurts in the dark night. I've tried it all, pleaded in prayer for the rescue from the midnight memories. And yet, they return, I've woken up yet again this morning swirled in them.
In the vulnerability of my sleeping state, I'm taken back to that place of rejection I once experienced. When I wake, it's there. My joy is robbed; my heart is hurt again.
Have you been there? Perhaps in the night as I have felt? Or perhaps through repeated interaction with someone whose end goal, it seems, is to deem you inferior? Or through series of failures that just can not be conquered? Or perhaps it was just one thing, one word, one look, or the lack thereof that your heart just hasn't been able to mend from?
My heart aches for the possibilities of realities we have journeyed, and, as I wake from the dreams feeling, are left feeling rejected, alone. Surrounded with daylight blessings, joys, triumphs, love, it doesn't matter because sometimes, the hurt, the ache, the insecurity, the rejection, it's so very strong.
It's taken me until now to discover redemption in this place of torment.
"Weeping may last for a night, but joy comes in the morning." Psalm 30:5
My fingers are flying, my heart is singing as I type furiously because I know this is rescue. This is hope. My friends, this is truth.
"I lift my eyes up to the mountains, where does my help come from? My help comes from you, maker of Heaven, creator of the earth." Psalm 121:1
My dreams still happen, I still wake remembering the heavy sting, but memories are not stronger than the present, reflections are nowhere near as clear as reality.
The reality is, a stronger redemption and acceptance are offered. And, I'm learning to let these nighttime reminders lead me to back to what I know to be truest.
"See what an incredible quality of love the Father has given, that we can be named, called, counted as children of God." 1 John 3:1
See, anyone who reads my blog knows the shameless giddiness I can't hide regarding my littles. It's kind of a new level of silliness I feel, but I love it. Love them.
And, if I, in my short years of mommyhood, my short years of living and major imperfections can love so unconditionally and thoroughly...wow, the love my Eternal perfect Father must feel toward me. He's giddy toward me. He shamelessly adores me.
"God is love." 1 John 4:8
In him, shame and disappointment are washed clean, and in it's place, renewal, peace.
In him, doubt and insecurity are no more; identity and beauty are established.
In him, hurt and rejection is healed, confidence grown.
"So therefore, let us draw near with confidence to the throne of grace..." Hebrews 4:16
Confidently soak up his love today, friends. Let any valleys of rejection you've experienced remind you, persuade you, convince you of the heights of his unconditional, all-encompassing acceptance and love.
"Neither height nor depth, nor anything else in all creation will be able to separate us from the love of God that is in Christ Jesus." Romans 8:39
Monday, September 10, 2012
This fall weather is lovely.
I know this week it will probably be 100 degrees again. But I am more than thankful even for a couple days of it.
This Saturday we had no To-Do list, no agenda, and I don't remember the last time that happened.
We headed to the farmstead to enjoy the day, animals, and pancake breakfast that Emmaus' therapy group was putting on.
I don't know if it was the chill in the air, live music, or animals, but Emmaus was ECSTATIC!
She was excited about the goats (and goats, and goats- pretty much the farmstead had a LOT of goats).
It was so refreshing to get out not feel rushed or like I had other stuff to be doing.
A no agenda day with my favorites. We call that Sabbath around here.
I am starting a crazy work week (okay two weeks)- but I'm starting that work from a time of rest. And that feels balanced.
Sunday, September 9, 2012
We have been living in survival mode for a while now.
From learning to be parents, to learning how to take care of our little chubbs with her special set of circumstances.
But we are moving on to thriving instead of surviving.
And for me it all starts with cleaning the sink. I SUCK at doing house work.
And I REALLY suck at doing it because I feel a wee bit overwhelmed with other things in my life.
So Dan does most of it and I feel guilty.
So I have simply started keeping my kitchen sink clean, which means the dishes have to be either in the dish washer or put away which leads me to unload the dish washer.
It makes me feel like I have done something and I don't wake up with a full sink starting the day feeling overwhelmed.
It usually leads me to start some laundry, clean my floors and even mop sometimes. WIN!
(This all came from a friend's suggestion that read it from the FLY LADY- you can google her methods)
And then I sit, and enjoy my cup of fall coffee. In my clean kitchen. Which gives me a few moments of rest in my day.
Thursday, September 6, 2012
Do you remember the first time your child chose you? Chose to love you in return or show you affection?
I remember when my bestie's daughter starting giving her hugs and kisses. And I remember having the bittersweet feeling of knowing it might be a while before Emmaus chose to be affectionate with me.
Well lately she has started "hugging" and then she has started kissing- I really thought she was just trying to bite me (which she does a lot too), but she ever-so-sweetly pulls your face close and opens that mouth wide and gives you the biggest slobberiest smooch.
It melts my heart.
The last few days with this girl have been so fun and so sweet. I love seeing her change and grow. Best part? She finds me hilarious. (OBVIOUSLY she has a good taste in humor)
Wednesday, September 5, 2012
We are working on a new Rhythm around here.
A balance of rest and work.
And truly working FROM our rest instead of resting from our work.
A balance of being with friends and spending time alone.
We are both extroverted introverts, we need time alone to recharge.
Eating well, Exercise.
Daily time spent with the Father.
We are getting out of the survival mode we have been in for the last year.
And moving into our rhythm. A sweet beat that allows stress to be handled well because we have a "normal tune" to return to when it passes.
I am learning to say NO.
Dan is learning to SIT DOWN.
Rhythm. It is important. We are learning that.