Wednesday, March 25, 2015

Well Hello!

It is in my nature to want to connect with people. To build relationship. to encourage. At the base of who I am these things are very deeply rooted.
I think that is why I started to blog in the first place. I have a profound belief that as humans we are more alike than different. Sure we have differences, but at the base of humanity we are all very similar.
I am to live my life out loud, to live it honestly. My life isn’t perfect. In fact, it is messy,  really messy. But it’s beautiful. And in the mess of it all is truly where the beauty is found.  In the moments of grace that surround our busy schedule, my tired reactions, and that horrid “Witching hour” those are the moments where joy peaks through.

So as I find myself in the midst of chaos generally and don’t use my spare moments to blog- come follow me on Instagram at @laballew  I frequently post picks and share “mini blog thoughts” on my post.  I will still be around here.  I am going to try to post weekly. But I DEFINITELY am there more frequently.

A little update just for the books.

I truly haven’t wrapped my mind around adding a third little girl to our family. Apparently it takes me a LONG time to get on-board with surprises.  In fact, despite this pregnancy zooming by- and the fact I am already 22weeks, I sometimes still forget I am pregnant. I am wondering at this point if I will be totally shocked following her delivery.

Emmaus is frequently saying more words, and throwing more temper-tantrums. And she is really developing a little sense of humor, which keeps us laughing.  

Shiloh is a typical sassy 19month old. She knows what she wants and when she wants it, and her vocabulary is rapidly expanding.  She climbs everything, and has graduated to sleeping in a big girl bed in Emmaus’ room.  She also is good for a tantrum frequently.

I am growing rapidly- (both personally and physically).  I am known to be seen shedding a tear or two completely overwhelmed with my tantrum throwing toddlers and then in the same breath completely overwhelmed in a good way- blessed and thankful for those girls.

And Dan. Well he is the anchor like always.  I married a good one. Seriously lucky.







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Thursday, January 1, 2015

2014 Review

As a new year is ushered in the inevitable reflection that comes with endings is upon me. I haven’t blogged much lately and I’m not really sure why. Maybe there isn’t much to tell? Maybe things have finally settled a bit?
As I reflect on 2014 I realize I truly have no attachment to it. We have had some particularly crazy years lately. 2011 Emmaus was born and we dove deeply into being new parents and raising a child with complex medical needs. In 2012 we made the emotional decision to battle seizures with brain surgery. In 2013 we welcomed Shiloh to our family and adjusted to becoming a family of 4. And in 2014, while it had its challenges, seizures reoccurring, lots of work on Dan and I’s marriage, family living with us for 6 months. It also was kind of a neutral year. No huge changes. No major life events.   Looking back on it- even in the chaotic parts, it almost seemed restful.
The girls are growing and changing super quickly. Shiloh is really loving pretend play, feeding her ‘baby’, dressing up, and is eager to be a little helper. She also has a crazy temperament.  She can go from happy to melt down in about 1 second- with tears and all. She is an emotional little girl. Her current favorite word is “nooooooo” said quietly with a scrunched up face, nasal sound and shake of the head. It really is pretty funny because Emmaus’ new work is “Yah”. We ask her all sorts of questions just to hear her sweet “Yah”. Every time you ask a question you can see her process the question and excitedly respond. This is huge progress. And for the most part her Yah, truly means she wants something. Emmaus started a ketogenic diet which has overhauled our families diet. She also started Depakote- the best drug we have used yet (amazing mood control benefits as well as sleeping benefits!) Not to mention between that and the diet we almost have seizure control again! 
We look forward to 2015. Knowing it will be a year full of change, growth and development.  Besides Dan and I setting some financial goals for our family in 2015, I am basically resolution free. No pressing matters to “work on” or huge goals to accomplish.

2014 
I started the year by saying goodbye to New Birth Company and solely working at Children's Mercy
We traveled to Destin Florida with the Girls for our first true family vacation. 
Dan and I went to Washington DC to attend the World TSC conference. 
We had fun sharing our home with Dan's brother his wife and their little man in their transition back to KC
Dan and I co-chaired the super hero themed TS walk in Kansas City
I got to take a quick solo trip to Colorado to see my friend Laci

2014 you were good to us. We are excited for all 2015 has to bring!








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Friday, October 31, 2014

Remembering the progress.

I am learning. Slowly learning to turn the brokenness of my life into beauty. To be less overwhelmed by the "what should have been" and more embracing of the "what is".
Today I remember where we were one short year ago. I was lost in the world of "newborns" all while navigating a non-verbal, barely walking 2 year old. I remember feeling fully confident and yet completely uncomfortable in my roll of mom to two.
I remember last year wearing shiloh, watching Emmaus parade around her school- holding the hand of her teacher to allow her to walk such a distance.
Today I watched her navigate sensory toys, say hello to many, laugh, enjoy her peers all without a meltdown, or a protest. THAT IS PROGRESS.
Sometimes I feel overwhelmed by how slow her progress is. How slow it seems. But truly- I need to remember the victories. See the progress.
I tend to label things. And recently I have found myself labeling Emmaus as "hard".
But truth is all children are "hard" parenting is hard.
And so in working on changing the way I view things I want to set it straight. Emmaus is beautiful. She is a miracle. She is complex, funny, and sweet. She melts my heart and ruins me in the best way. Her inability to communicate clearly is hard to me because I am so relational. However- the immense progress encourages me. All of this makes me so very proud of her.
And my little tiny baby that so quietly watched the parade last year?
Shiloh is such a funny little girl. And she is so much girl. She has taken to sleeping with not only her favorite bunny, but a Katerina kitty cat doll, and often a random toy. She loves to dance, she communicates her needs well. She has amazing recall, and talks...a lot.
Our life is busy, it is challenging and broken.
But it is so beautiful.
And today I stand remembering the beauty that surrounds us. The faithfulness and the goodness of the Lord to provide growth, progress.


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Wednesday, October 8, 2014

More than Enough

About 6 months ago I realized I needed to stop being such a "Do-er" a "make it happen" kind of person. If we needed money, I just worked extra- and truly did this to the detriment of my family. If we had a need I thought, "Well I have a flexible job, I can just work more and make it happen".  And finally I realized I need to stop taking things into my own hands so much. I need to work hard, and yes provide where I can, but stop trying to force things.  And so as a result of me backing off things have been a bit tight.
I was complaining to my mom and she said, "Laurisa do you not have enough? Is there a bill you can't pay, or something you need you can't get?"
It made me realize that we have enough. Always enough. But rarely extra. And this, when things already seem so stressful feels uncomfortable. It would be nice in the midst of a hectic, hard, and overwhelming life to have some wiggle room.
We work hard, We are wise with our money. We save where we can, because emergencies always happen, cars break down, plumbing issues happen, you get mice (I MEAN SERIOUSLY? I THOUGHT WE SHOULD MOVE- LET THE MICE HAVE THE GARAGE, THE WHOLE HOUSE IF THEY WANT?!)

We as a family have some specific needs, and I have some specific desires.  And I have been praying for these things to be provided. After a bit of nothing happening I had this epiphany that while the Israelites were in the desert God provided ENOUGH for them. Not more than enough, not an overflowing amount but enough for each day. However- he did not make them wander in the desert forever- it was a temporary thing.
I started thinking about this after someone randomly send us $200 in the mail. I mean that was a GREAT mail day! And I was starting to feel like maybe it was our over abundance? A bit of wiggle? And then when I was reconciling our budget I realized that $200 perfectly paid for the tire that went flat and had to be replaced on my van.  I was thankful once again for the ENOUGH.

I was telling a friend this story and she said she feels differently, that she believes our story is not one of wandering in the desert, but a story similar to when God turned 5 fish and 2 loaves of bread into an entire meal for a huge crowd as well as extra baskets of food left over.

And then our fish began to multiply.

Dan applied for and received a grant from his work. This grant will give us some wiggle room as well as provide for the money to start the Ketogenic Diet (A diet used for seizure control) for our family.

We went to IKEA ready to buy a new couch with money earmarked for furniture that I had been saving, and the couch we wanted was discontinued in the color we had decided on. On the way home (without a couch) I started thinking about how I TRULY wanted the pottery barn couch- (It is about $1500 more than our budget) And so I asked the Lord for a pottery barn couch. That very day one moved into our living room in AMAZING condition thanks to craigslist.

After many many sleepless nights a friend sent a $25 Starbucks gift card in the mail.

And today may be the craziest. As some of you probably know I wear Emmaus a lot. And that girl and her long legs have outgrown our ERGO carrier. Being able to wear her allows us to go do things as a family. When she gets out of her comfort zone she often freaks out a bit,  and just the sensory input of being close to Dan or I by being worn helps her calm down and enjoy herself.

So today my bestie tagged me in a contest to win one. And as I went to like the picture and enter the contest I thought, "I will never win this thing! God just needs to provide one if we are gonna get one" And I'm not kidding you 20 minutes later a girl I went to nursing school with messaged me and said she saw the picture and wants to get me the one that would be best for us. This is not someone I know well,  she and I were not best friends in nursing school, she just has been the recipient of peoples generosity and wanted to pay that forward.  I am in awe.

So I figured I would just put out one of the other things I am hoping for/ desiring. Not to be greedy. Or ungrateful for what we have been given, but because I believe God is capable of delivering this.

1. Emmaus went to the most amazing preschool last year. It was a developmental preschool that was all day. 8-430 TUES/THURS.  She grew so much being there. This year we have be given the opportunity to send her to Shawnee Mission's Preschool. It also is for developmentally delayed kids.  I am thankful for the FREE education. But I think she is regressing. I think the school she is in now is less intentional with her, and they see so many kids that it isn't the best for her. I have been praying for a way for her to go back to her other school. However- it comes with a hefty price tag. And me working 4-6 shifts extra a month to make it happen isn't reasonable. It isn't good for my family. So I will just continue asking.

We also have had people live with us most of the time we have been in our house. It provides us a way to give back and just a way to tangibly meet a need for those around us. And we have been looking into finishing our basement (it has its own enterance) so better be able to do this. So that is another prayer.

Anyway- just wanted to share the way the Lord has been abundantly providing for us. Cause I for one am amazed.







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Friday, September 26, 2014

Grieving Gracefully. Or not so gracefully.


“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.”


Lately I have been caught off guard by my grief. I thought I dealt with it. Ha.
Grieving is a funny thing. Okay lets be honest there is nothing funny about it. But it is odd. And gross and yucky- and I am trying to figure out how to do it as an adult. Because I have responsibilities. A job. Two kids. My kids have needs, and expectations, therapy sessions. And sometimes they need to eat. (Unless you are Shiloh, then ALWAYS you need to eat)
I digress.
So grieving. Yeah- I am trying to figure out how to do it gracefully. Is there a way? I find myself caught off guard by my grief often and it comes pouring over in the most untimely circumstances.
Our counselor suggested that I tend to wrap my grief up into a nice little package. (Yes We see a counselor- cause that's just good sense)
I wrap my grief up to end holding onto hope. However- he has challenged me to let go to Let God keep me afloat. To ride the waves of far enough to lose sight of the shore. And trust in the deep, that my faith, my Lord will carry me.
And I'm afraid.
I am afraid that in the deep I will be alone.
That the waves will pull me under and I will not be able to swim.
That when I cry out and the Lord will not redeem this huge mess. That he will not come to my rescue.

And I am trying to figure out how to do it in my daily life, without feeling so yucky. Because my grief is thick, it is sticky, and doesn't smell nice. It is heavy.

For a while we were extremely hopeful that she wouldn't have a "severe" case of TS. That brain surgery was her key- and she would be seizure free. That she would "catch up" or develop typically, or with just a minor delay. And as time progresses we are somehow surprised by the reality of where our 3.25 year old is developmentally. How our almost 14month old has passed her so quickly. And that with the return of seizures her development has haulted so quickly. And so we grieve.

So where do I even begin? Do I begin with her?

I should have a daughter who can talk, who can make up funny stories, and can sass me.
I should have a daughter who can articulate her needs. Who goes to preschool 2 days a week for 3 hours and then who can excitedly tell me she was the line leader, or that she made a friend. I should have to spank her butt for calling me a poop head- (I mean just just have heard this happens with 3 year olds).
She should want to dress up in a tutu, she should want to dance in the rain. She should be scared of the imaginary things living under her bed- and when she is scared of them, she should be able to tell me. My biggest concerns should be her bad attitude or how she treats those around her. I would worry about her having a runny nose, fever, and cough.

Or do I begin with Dan and I?
I shouldn't have to worry about missing med doses, and the consequences if I do. I shouldn't have to be sad we can't afford the school that is best for her. I shouldn't feel guilty that we don't have the resources that can give her the best. IE- Therapies, and classes that will help her learn to speak, use a fork, or pull up her pants.  I shouldn't have to feel bad for wishing she was typical. I should get to sleep with my husband more than once a week. And I should never have to say "We don't bite, hit or slap ourself" to my 3 year old.  I should get to enjoy sleeping in till 8am without fearing my child is dead. We shouldn't have to be awake more at night than asleep. We shouldn't have spent a nice downpayment on a house in the last 3.5 years on medical bills.

Because as our counselor pointed out this week, we not only grieve the disease Emmaus has. And the loss of the typical. But we grieve the life we do not have. And the loss of what "should have been".

I know this post seems yucky. And not so hopeful. But I think it is necessary to get through to the place of acceptance. And hope. And back to our reality- where pain & joy will always co-exist. They will always walk hand in hand. But I think this grieving is necessary to thrive there. And not just survive.

So for now please excuse  if this seems less than graceful. If it seems yucky. If it seems uncomfortably real or painfully raw. I assure you it is all of those things. And while our culture likes to sweep them under the rug. I will just continue to write honestly here.



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Tuesday, September 23, 2014

un-done

They say a picture is worth one thousand words. 

I love this picture and it is hard to look at. Because to me it tells such a raw and personal story. It symbolizes the amazing beauty, paramount potential and Isolation that is our road with Emmaus.

She is beautiful. Standing alone, moving forward even. Looking at a vast space of potential. A space that holds many obstacles, much progress, and even danger. A place that a little girl easily could get lost if not navigated with the greatest of care.  She is brave to stand alone. Confident. And yet, what truly gets me in this picture is that she is unknown. You can tell things about her. That she is little, that is brave, and confident, you assume she is beautiful. But she is unknown. A mystery because she isn't facing the camera.

This picture wrecks me. It undoes me. Because this is my reality. I am guiding my sweet child, my beautiful girl through so many obstacles, a land of potential, yet, that holds so many dangers. And I am doing all this without truly knowing her. She is a mystery to me in so many ways. I know her preferences, but not her needs or desires.
As I guide her I am confident I am doing my very best- but it usually falls so very very short. And we end in a puddle of mutual frustration. Mutual grieving.  A place of such deep isolation. Myself as a mother that cannot possibly cure what truly is troubling my girl. A little girl so isolated in her inability to communicate or even sort through why she is upset.

Lately we have been rocking. Whenever she gets upset I rock her and sing to her. It is a simple place where I can meet her. Provide calm.
It is a sacred place where we find peace together. Where for just few minutes our inability to connect and our isolation fade away and we can just BE. TOGETHER.








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Friday, September 12, 2014

Surely


Last evening at a meeting I was at a guy was talking about assuming the best in people. And he used the example of his wife. So he said “When my wife says something that grates on me, I go ahead and pre-forgive that (or basically letting it roll off his back) and assume that she stands in a place of loving me, and wanting the best for me. Not in a place to offend me.”

Lately I have had trouble believing that God wants the best for me. Not that he wants harm for me, we just have been walking through so much it is easy for me to begin to believe that because things have been so hard, that God must not truly care, that he won’t come through. And when people have been reminding me lately “God will provide” I can’t help but hear a voice in my head that says “But will he really?” 

Last night Emmaus got up at 2am. She has gotten up every night this week. Sometimes sad, sometimes hyper and happy, but last night she was angry. She was biting herself, pulling her hair, and hitting herself in the face. This is so much harder than hyper or sad.  It feels hopeless. As I lay next to her the only thing that would calm her down was my praying for her aloud. After I had prayed I started saying scriptures I had memorized to her.
The one I said most was the 23 psalm.

The Lord is my shepherd; I shall not want.
He Makes me to lie down in green pastures: he Leads me beside the still waters.
He restores my soul:
he leads me in the paths of righteousness for his name's sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runs over.
Surely goodness and mercy shall follow me all the days of my life:
and I will dwell in the house of the Lord for ever.

That last part got me thinking. “Surely goodness and mercy shall follow me all the days of my life. “
In the life I am living I would say goodness and mercy sometimes are camouflaged in the middle of the night play sessions, the seizures, crazy therapy schedules, the frustration of a non-verbal 3 year old,  and money being tight.  And sometimes it doesn’t seem so “good” or so “merciful”.

I love that it says “surely” it assumes God has good planned. The author is basically saying “Well of course” or “without a doubt”.  
 And while I know God is good, loving and kind- believing that SURELY he has goodness and mercy planned in the middle of the big messy stuff we have in our lives is a reminder I needed.

Isn't that fresh air? Surely Goodness and mercy will follow me. 




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