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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Saturday, August 30, 2014

I'm sorry, I didn't know"

"I'm sorry, I didn't know."

Today I headed to the grocery store. I took with me one envelope of grocery money, one non-verbal three year old, and a purse full of snacks and a cup of milk. I even had a list- which lets face it is the icing on the cake.
I quickly checked things off the list and to my surprise and delight Emmaus was amazingly well behaved. No whining, no throwing her snacks or pulling her hair,  just happy to be out with mama. As I rounded the produce corner an older, well dressed, fashionable woman - mid seventies I would say inquired how old Emmaus was. I smiled and said "she is three".  The woman in an overly sweet voice kinda clicked at me- and then said "well its about time to get her out of those diapers then, don't you think?"

My heart sunk to my feet, and it took everything I could do not to cry. It has been a hard few weeks around our house. The reality of having a special needs child, and the permanency of that reality has hit me like a ton of bricks. Lately it has taken all my strength to get myself up, care for my children, and not just melt into a puddle of tears all day long.  And so today, for me to wake up, do our September budget, get to the bank, make a grocery list and get to the store was quite an accomplishment.

I quickly smiled at the woman and replied "Oh, she is developmentally delayed, and has an uncontrolled seizure disorder, so she's just not there yet." To which she looked horrified and said "I'm sorry, I didn't know."

See- that's just it. None of us know.

We all walk around assuming that we know what is happening with other people. We form opinions, and convince ourselves we know best and that our opinions are truth. But we have no idea what is happening in other peoples lives, what their backstory is, or if they have had a bad day.
Yet we judge.
We judge the woman in front of us at the grocery store using WIC checks she pulls out of her designer purse.
We judge the grumpy man at subway who gets huffy with the lady making his sandwich.
We judge how people parent, how long they breastfeed, if they don't breastfeed. We judge if they spank, or if they don't. We judge what people feed their kids, or what they restrict their kids from. We judges peoples homes, and attitudes.
And yet- we don't truly know.

Just like the woman thought she could see the whole picture- a child who looked typical. Clearly was old enough to be potty trained, and was still in a diaper- so she assumed I just hadn't done it? Or was babying her?
But she couldn't see. She didn't know.
And I couldn't even be mad. Because I have been this woman. And while I haven't been bold enough to speak my opinions- I have sure thought them.

While the permanency of having a special needs child has hit me hard. The sight it has given me I am so thankful for. I am learning to fight my opinions. To give people the benefit of the doubt. And to spread love instead of judgement.
Because- I just don't know what people are up against. I don't know who is thriving and who is barely surviving. And so why not try to love those I encounter. To speak kindness, and give people the benefit of the doubt. That they are doing the very best they can.


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Tuesday, August 26, 2014

The Second Child Mom Guilt.

I never have really dealt with mom guilt before.
You know, the guilt of- I work outside our home, don't have my child set up for every activity, let my kid..., Didn't let my kid..., The guilt of what we think we should be providing, but aren't?
Yeah- I never have really dealt with that.
Until recently.
With my first child I had all the time in the world to focus on her. And with the addition of a second child- and my first child still requiring lots of attention, I suddenly am struck with mom guilt.
The baby book is pretty bare, the photos are less common. And this happens to everyone. I know, I know. But how do I explain to my second that she is just as loved as my first?
Sweet girl-
   There are about 80% less pictures of you than your sister. You wear hand me downs, and play with tupperware more than toys. None of your first foods were organic,  and you had tons of sweets before your first birthday. I didn't attend to your every cry, and you often even as a small baby had dirt under your fingernails (I mean how the heck did that get there anyway?). And the other day I smelled your sweet barely 1 year old feet and about fell over. That never would have happened with your sister.

The first moment you were laid on my chest I knew you. I knew you were mine. And because I had parented before, I knew what to do with you. You never felt clumsy within my arms. You immediately belonged to me. Your first smiles delighted me, and your giggles made my heart swoon. You were my second, but in no way were you less celebrated by me.
Yes, I failed at writing in your baby book.
Yes, I don't remember the dates of all or milestones or even what outfit you wore home from the birth center. (Sorry I was tired, I hadn't slept in two years)
But you are cherished. You are lovely. So please forgive me for the lack of photos, or lack of blog posts dedicated to you. I am learning to forgive myself and hope you will be gracious enough to forgive me too.
I refuse to be the mom spending my days feeling guilty about my short comings. Instead I will spend that energy chasing you around. Sculpting you into an acceptable little human, teaching you please and thank you, and pretending to be the queen of your princess castle. I will don a tutu for you and rule with my wooden spatula scepter. And in the end when your baby book is still sparse, and your have about 2.5 pictures of your youth- I hope you remember our adventures. And that you are confident in how incredibly spectacular my love is for you.



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One

Oh my sweet Shiloh-
    How you are already one I do not know. You my dear are a miracle. You are wonderful, you are funny, you are sweet and sassy.

We call you grandma baby and godzilla baby all in the same breath. You are a breeze of fresh air in our home. The way you learn, the ease in which you acquire new skills is refreshing. It is fun. You and I are a lot a like I have a feeling.


I love the sound you make when you eat. Always always always making a nomnomnom or ayah ayah ayah sound as you munch along. You are determined. Focused. And oh my do you have a temper.
Emmaus is your favorite. And when she is ignoring you or just oblivious to the world you sweetly stand next to her squat a little and crane your neck and head around to get your face in hers. And then you touch her face- or laugh in it. Which promptly starts a laughing fest between you two. I hope you always pursue Emmaus even when she is hard to connect with, because here is a secret for you- you are her favorite too.
At one year old you can sign milk, more, eat, and all done. You can wave hello and bye bye. You will go to anyone and really love touching people's noses. You can walk!! You look like a toddling tank, but you can walk. We are so proud of you and you are proud of yourself.
You love to dance, and you are obsessed with the doll house. And more specifically the baby and the dog. You understand how things work. I love watching you think, you figure things out super quickly and it amazes me.
You were completely unimpressed with your cake, and threw all the berries and frosting off your tray
Your name means peace & abundance and "oath of God".  You are those things to us. You are peace in the midst of our chaotic life. And you have made it abundantly full. Full of normal, full of tutu's and a love of baby dolls, full of giggling, and sleeping like a champ. You have made lonely empty spaces in our life full of light.
Baby Shi, I am so glad to be your mommy. And I can't wait to see the little girl you become in the next year.
I love you my dear.
Love, Mommy
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Thursday, August 21, 2014

Amnesia

When I get super stressed I have amnesia. I swear. Is this common? Anyone?

We haven't had bread all week. And yet there are so many things running through my head I can't remember to write it down. I look for bread, we are out and by the time I go to write it down I am on to something else and I forget that I needed to write it down. I hate being this overwhelmed because it turns my attention span to that of a gnat and I forget everything. Its out of control .
Today I actually wrote a to-do list with two things on it. And I only did one- cause I forgot to do the other. The reason the to-do list was so short was because I couldn't remember what I needed to do.... Seriously. Stress. Makes me go blank.
I was brushing my hair and stopped to do something else- and later went to put on make up just to realize I only had completed half my hair brushing task- I mean a 1 min task I can't complete because I am too distracted? Lord help me
I mean- my kids got fed, and I think I brushed their teeth? Maybe? I know I brushed mine while giving the LONGEST phone survey known to man about our last hospital admission.... I thought it was the neurologist calling or I wouldn't have answered- lets be honest. Oh- and I showered. that is a major WIN!

I have been researching. So many meds, so many options, so many decisions to be made. I never in all my wildest dreams thought being an adult, a parent would be so real. So hard. That the decisions we make daily would be so huge.

And I am forced to deal with the simple fact, that as of right now- nothing- NOTHING (on earth) will cure Emmaus.  Palliative- now that is a concept I despise. No cure, just treating symptoms of an illness. Praying for a breakthrough. A cure.

It has been a hard week. Lots of seizures. And a new school for Emmaus. I had no clue it would be so different from TLC and right now I am missing TLC something fierce. She immediately belonged there. And this- is different. It is big, and institutionalized, and impersonal.  I need to give it more time. I'm aware. Just right now- that in itself seems like a task.
Everything does.

Praying that tomorrow I wake up clear, and focused and ready to bust it because we are celebrating our baby Shi turning one this weekend. And I have done nothing. So sad really. I love parties, and planning. And first birthdays for fat babies.
I mean- I can't remember what I need to do- so the productivity is at a minimum.
I did work out more than once this week, and ate less candy than usual. So win, win?


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Monday, August 18, 2014

New School

And just like that... Summer is over. 


Today Emmaus started Pre-school in the  Shawnee Mission school district.
She did great! I on the other hand was a bit of a mess.
As I process through why I am finding very deep layers of nerves.
I went to a public school in kindergarden and first grade and had a pretty negative experience. So I am nervous she will not be treated kindly, and if she isn't treated well how will I know? She can't even tell me.
My best experience in school was at a christian school that echo'd the teachings I learned at home. Where it wasn't just about teaching the children, and standardized testing. But about growing a child's character, beliefs and core values.
I am also going through the typical parenting process of wanting to protect my child's innocence. And while yes, this is only pre-school I care so deeply about what she is being taught outside of our home. How she is spoken to, how the world reacts to her, and what she is learning.
Truly- it makes me up my game at home. Knowing that she is out in the world. Out of our home and less protected. Makes me want to be more patient, and more loving, more encouraging in our time together.
The onset of seizures again also give me an extra component of nerves. Again, not something I can control. But she feels more vulnerable now than two months ago.

Like I said I may have cried. However- except for a few nervous whines as she got on the bus- she was a champ. She calmed down once she got in her seat on the bus. She watched us out the window as the bus drove away and didn't cry. She was happy getting to her classroom and her teacher said she did well all morning.

The day was quick. Last year at TLC she went from 8-430. And this is 8:15-11. And she is right down the street instead of 30 minutes away- however it seems like so much of a bigger deal. Crazy.

I will leave you with my page of nerves and a ridiculously cute couple of pictures!


This is my very favorite.
Well- Happy School Year!
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Tuesday, August 12, 2014

Never give up

I am a disaster. I am emotional. I am sad. And I feel the hope we have clung to for the last two years falling through my hands like grains of sand.
I maybe just ran up the hill to my house faster than I have run since I was in high school. Booked it. Because I am angry. And sad and I was gonna make that hill pay for that anger.
Yeah- it didn't really help. And on top of my anger and sadness I wanted to vomit. FAIL.  But on the plus side my sis-in-law and I shaved a solid 4 minutes off our route tonight.

Tonight I am looking at my life and wondering how this can be it? Wondering why these hard things have happened to me. To my girl.
We went in for a video EEG due to some suspicious seizure activity from Emmaus. I thought we would have to stay the whole 3 nights to catch something. That we would leave saying a med adjustment would do. Or better yet- that perhaps she wasn't seizing at all.
Instead in less than 24 hours they had plenty of data. She had several seizures we had seen. And even more we had not. In fact the neurologist running the EEG said the tuber that initiated the seizures was firing (aka seizing) about every 5 minutes. Thus she is seizing almost continually. We don't see them that often obviously because it isn't spreading to other parts of her brain causing the staring/blinking/giggling we have been seeing. Yeah- thats only happening 6-8 times/ day.

I got my hopes up. In the season following surgery where she had zero seizures I got to hoping that seizure freedom would be her norm. I started to feel safe in the everyday.
The walking up the steps by herself. The sitting in the bathtub while I grab a towel. The playing in the living room while I cook in the kitchen. You know, things typical non-seizing 3 year olds have freedom to do.  I stopped telling everyone she has seizures. The longer we went without one the more safe I felt.
And while losing the hope we have clung to so fiercely really hurts. It is better than never hoping at all.
So tonight while I feel so defeated, tired and lost. I know this.
God is good.
Even when he lead his people into the wilderness He provided them with everything they needed to survive. And he eventually lead them to the promised land.
I believe the same is true for us.

Tonight I am very thankful for the community we live with. Because I truly feel too weak to walk. To think and to deal. And so I know the people that surround us will help carry the weight for a while. So we can grieve, regroup and stand back up.
And the peace of knowing that is amazing.


And this girl. She is fierce. She is strong. She is my hero. 
Slowly, gently, she is teaching me to never give up.
So I won't.



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Wednesday, August 6, 2014

A generous heart

Sometimes the most simple acts of generosity blow me away.

I long to be generous. Not a little generous. But- give up something I really love- because I know you would love it too- generous.
I think that part of the reason I am such a huge Dave Ramsey fanatic is because when you don't owe others money, your money is freely yours to generously give.

As a family we have been given so much.
I can't even begin to list (nor will I try for fear of forgetting something) the gifts we have been given. The generosity especially in times of need that we have been shown.
And the faithfulness not only from the Lord but from our community too.

Tonight we had a fundraiser at Chick-fil-a to raise funds for the TS walk.  And man did our community show up.  It was incredible to see friends old and new. Friends I met for the first time tonight- but that are friends none the less. People came from all over the KC area to support Emmaus.  To support us.

And while people gave donations even above their time and dinner prices the sweetest most generous gift of the night came from a little girl that had never even met Emmaus.

I am sure she knows a little about Emmaus- as this event was for her. But she wanted to give Emmaus a little disney princess doll. And we all know how precious anything princess is to a 3 year old girl.
Reflecting on this generous act- I find it a little interesting that the age group most typically considered a little selfish, not eager to share and somewhat self focused (a child) so honestly and easily gave a precious gift to another. In fact- it wasn't just another, but another child she had never met.

And then I think of myself- And wonder, how I can be more like this sweet girl?  How do I reach out and give good gifts to those around me? Not my seconds, or my left overs- but things I love.
As adults I believe we are far too focused on our comfort, on what we have earned or what is owed to us. On having the very best, on looking a certain way to those around us. And so we miss the point.

So this little princess?
 It speaks volumes to me. It takes me out of my comfort zone. It rearranges my heart and my attitude. And it challenges me to become more child-like in my generosity.













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Tuesday, August 5, 2014

Thoughts about the last year

It has been a hard year. A good year. A really fun year. As I reflect on the fact that this time last year I was extremely pregnant and A WEEK overdue I cannot quite fathom how far we have come in a year.
This year I had two daughters learn to walk.
I watched as my big girl became a big sister.
I watched them both meet so many milestones.
And I've watch them become equals.
It is a bitter sweet journey to watch Shiloh so rapidly turn from baby to toddler. And to watch the mental gap between between the girls close.

It has been a hard year in our marriage. Adjusting from one to two has been harder that we both expected. Busy schedules, about a million life changes, and two girls to take care of. It has whipped our butts.  However- with all struggle and pain comes growth and strength.

We have learned to simplify. We have begun to keep a calendar so we can rest well.  We say no to things we can miss to make room for that which we cannot. We have learned to be strict in having rhythms of work and rest.
I go to work and joke with my managers that "I am an excellent nurse, but I only do the bare minimum when it comes to non-patient care (like I am not on committees, and I don't volunteer for anything extra) because truly- I am there just to make money for my family.
The days at home are long. But they are good. They are so good. Full of A big girl that is the most snuggly yet most whiney creature I have ever encountered. And her little sis- A spunky, dramatic, independent, joyful little one.

This year has been so different than I expected. I have been so incredibly challenged, and blessed by these children. And by my husband who has so patiently and consistently been an incredible support  to me and wonderful father to our girls.
It has been a year of growth for all four of us.

This life we live is so very messy. It is hard and way more real than I was prepared for. It is uncomfortable. And yet the joy and beauty that stems from those roots is immense. Incredible.

And I am thankful for it.



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Wednesday, July 23, 2014

The babies at the berry patch.

Summer. 
The time to make memories. 
To toss aside the routine and craziness the school schedule provides.
To embrace the calm. The open spaces. And the freedom. 
I truly had my heart set on taking the girls to the blueberry patch. I don't quite know why. 
I don't remember going to any type of fruit picking when I was little. 
And honestly I don't love blueberries. 
But it just seemed like a fun things to do. A fun memory to make. 
Luckily I had a girlfriend who was up for a last minute adventure. We spent the morning packing sippy cups, diaper wipes and lathering the babies up with sun screen. 
We loaded up in my van, listened to high voiced stories, and Emmaus' never ending plea's for "More Music" from the back seat. All while fitting in some much needed mommy conversation. 

The blueberry picking began. 
My girls probably ate as many as we bought. 


 Shiloh like to pick them, however her speciality was finding ones on the ground and eating them. 
I let her. Of course. 
Brushing the dirt off her face periodically.

 And Emmaus-  in her typical Emmaus fashion she sat in the middle of the row drinking her cup, enjoying her own company. Refused to pick any blueberries actually off the bushes (which was part of my thinking- that it would be an excellent fine motor activity for her).   She shoveled blueberries into her mouth by the fist full- until I took the bucket away. And then had a bit of a meltdown. So she rode on my back while we picked berries. (Side note- wearing Emmaus has saved my life. And pretty instantly calms her. Something about her sensory issues and being tightly held/worn by me. MAGIC)

We ended our trip with incredible thunder top blueberry muffins. Imagine still warm blueberry muffins with cinnamon on top. So yum.
 Blueberry faces all around. 

I think this was the first of many trips to the berry patch.


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Friday, July 11, 2014

And thats a wrap. First year of preschool is complete!

I do not claim to be an expert at raising a child with special needs. In fact, I fail. A lot.
I often find myself at a loss at how to help her. I do not possess supernatural patience. We probably watch too much "Daniel Tiger". And it is quite possible that I let her watch 4754839498 Adele Music videos and covers today- because she kept saying & signing "more music" and then said "Adele" when I asked her if she wanted Adele. (The girl is obsessed with Adele. Could be worse I suppose- but I am a bit sick of Adele)  -In case you missed it- that is two words people....in a row. Practically a sentence. Bam. My kid speaks.
So my point...  I am not a natural at this special needs parenting thing and I probably wouldn't have chosen this road if I had been given a choice. (I would have missed out majorly)
So I find myself in awe of people who chose to work with Special needs kids.
We had the opportunity to send Emmaus to an incredible developmental preschool this last year.
Full of people who chose to build their careers around children with special needs.
Teachers. Therapists. Administrators.
It is truly incredible and honestly blows my mind.
I was terrified to send Emmaus to school. Would they like her? Would they be kind to her? Would they make her feel safe and loved?
Every aspect of the school was incredible. Her therapies were in house. Her teacher & para amazing! She ever had the reception girl wrapped around her finger- they would visit and she would ring the bell.
I basically loved all of it- minus the price tag and the ridiculous drive during rush hour down town twice a day.
Yesterday was our last day. (she will receive preschool services in our school district starting in Aug)
I maybe cried a lot. Like ugly cried.
I cried in the morning when she refused to take a picture by herself. You know- I just wanted a good last day of school pic- and I even got mad when she threw a fit about it. FAIL.
I cried after I dropped her off, thinking of how much she has changed and all she has accomplished in the year.
First day of School Aug 2013 
(She wasn't even walking yet!!- And did her bangs seriously look like that?)
I cried when I picked her up, and when I read all the sweet things her teachers and therapists wrote about her.
BAH. And now I have to do this every single year for the next 15?
I hope we are always so lucky to have wonderful teachers and experiences.

 Emmaus with her wonderful teacher! They had such a great bond from the beginning! We are very lucky to have had such an incredible teacher for her first year!

Last day of school July 2014 
 No but seriously- this is more realistic to how the morning went. 
 The drama...



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Monday, June 30, 2014

An Excellent Day

Yesterday was a good day. A really good day.
I would say good days for us are far and few between. Don't get me wrong. We have a list of things we are thankful for daily, and we have great moments each day. But generally speaking Emmaus has a lot more hard moments than good ones. And So I have conditioned myself to have pretty low expectations. For example. I took treats to school on her birthday and she basically lost her shit. She freaked out, pulled her hair, screamed, threw the pretend cake her teacher had set out. She did enjoy the singing. And I enjoyed the grace her teacher extended to her. And the fact that her teacher knew the music that would make Emmaus happy and played it during snack time. But overall- I wasn't surprised by her reaction or disappointed- like I would have been six months ago. I am learning to keep my expectations low and then when a good day comes- I am pleasantly surprised!
And yesterday we were surprised by a really good day.
She woke up happy. She went to target with her dad and sister and didn't have a single melt down. She walked around all day embracing the knees of those around her giving the best hugs! I heard her say words I have never heard before! (Strawberry, downstairs) She took a nap. And all of this happened on the day we had planned her little birthday party.

I even had a little craft time in the morning to finish this book garland- which always is a plus. Creating anything is good for my soul! 

She was ecstatic to see some of her favorite people. She didn't freak out when we sang to her, or cry when she got overwhelmed. She just was a fun happy girl.

She even enjoyed opening her presents, which has never happened before! 

 And then baby sis capped off the party by taking 5 big steps in front of the remaining family! I have been convinced she would start walking while Dan and I are out of town this week.  We missed Emmaus' first steps because they happened during physical therapy at school- so it was very fun to see Shiloh's!

I am thankful for the rest a wonderful day provides. Yesterday will be a shining memory in my mind for a long time to come. Happy girl. Stepping baby. Sweet times indeed.

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Wednesday, June 25, 2014

I'm starting a new club

Fear is a funny thing.
My best friend and I talk about fear a lot. She is a naturally fearful person. I do not happen to be a naturally fearful person- but I have a lot of fearful things generally present in my life. 
She generally fears the typical "parent fears". Horrible germs, strangers, "I heard on the news" scenerios.

I tend to fear things equally as dark. Seizures that we could miss- leading to the ultimate fear of any parent- death. Okay- well basically that is my main fear. (I also fear vomiting and explosive poo- cause OMG so gross-)

What I am saying is we both fear. A LOT. Whether our nature (or nurture- however you want to look at it)  is prone to fear, or to be more go with the flow- fear is a daily struggle for BOTH of us. So I assume we aren't alone in this little fear club of ours.

Somehow we have convinced ourselves that by worrying about things and fearing things we have some control over those things. Which is just absolutely false.

I shared with a friend today that I was unreasonabily fearful about Emmaus right now. She has been acting a little off, and my mommy gut tells me something is up. Her response was so life giving.
"That means we need to pray. Our God loves to deliver us from all of our fears and bring healing and peace into our souls and our famlies."
And the good news is- I believe this! Fully.

I believe being a parent is such a good tool to drive you close to the Lord. Because you ultimately are not in control of the lives you have been give to guide. And while you must guide and protect where you can... You must trust in the Lord to do the rest.


So today. As I struggle with being overwhelmed with fear. I just figured I would name it. And instead choose to stand in the place of truth. A place where reality still exists. Something may be brewing with Emmaus- but that no matter what- in that the Lord will not forsake me. He stands with me in this place of truth- and reality. And while the reality of our lives may mean seizures are present or lurking under the surface. Reality also is-
That the Lord is faithful.
He Loves me.
And He is bringing good news.

You can join my truth club if you want. (Positions for co-encouragers and retrivalist- (those who go get members who have fallen back in to fear) are currently open)  


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Monday, June 23, 2014

Cinnamon Sugar

Few things make me quite as nostalgic as sharing some of my favorite childhood things with my daughters.

This morning it was cinnamon toast.

Perfectly made. Crunchy, but somewhat soft from using too much butter, and then saturated with sweet, cinnamony, goodness. Just like my mom made it.

The typical chaos slowed amongst the signs, and spoken "muh muh" and squeals from the small one  (who had woken up super early and had already had two breakfast's)  Never fighting each other for the next bite but each knowing there was plenty to be had. It was a moment in time I will remember as a mom.
              Two girls.  Their rose bud sugar coated lips. And and lots of bites and happy girls later.

Now... Maybe we should try orange julius. Hey mom- can you email me the recipe?




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Sunday, June 22, 2014

Starbucks Love

I met my husband working at starbucks.
Well I suppose I really met him while studying at starbucks. We both worked there. He was the new assistant manager and while reading some assigned reading after my first day of nursing school (I assure you that is the one and only time I actually read the assigned reading- first day vigor I tell you) the store manager introduced us.
It wasn't love at first sight. Well I mean- he swears he thought I was the "hot girl" of the store- so he was interested. And I truly just wanted someone to be interested.

I was coming out of a 4 year long very messed up broken relationship. I was down on myself due in huge part to lies I believed about myself spoken from an immature young man (we both were) who I was so madly-abandon all your good sense and principles- in love with.

Anyway, our relationship started slowly. In fact for a long while nothing happened. I jokingly refused to call him Dan- instead I called him STAN- because Dan was the name of the guy I had dated before.
Can you imagine? I actually called him Stan for months.

By Christmas I liked him.

He dressed up like Santa for the PV Starbucks christmas party. Which showed me he wasn't above a little self embarrassment for the greater good. And for the employee christmas party I was crushed when he sat next to another girl the whole night and volunteered to leave early to close the store. However- a friend and I took his white elephant gift to him after the party.

By spring I went out of my way to "stop by the store" when I was off work looking all cute cause I knew he was working.

We had our first date in March- which truly wasn't a date at all and involved me heading over to his house after babysitting and hanging out from 12-5am. We played heads up poker all night and got to know each other. The whole night he kept saying "lets wager something" knowing he meant a kiss- but I refused to offer, and he was too polite to ask.

Early summer I transferred to a new Starbucks so we could "legally date"- since he was my boss.

By late summer I was in love.

Dan's natural calm, his quiet confidence and his sense of humor caught my attention.  His incredibly hard work ethic, and him being my intellectual counterpart captured me. And his honest, incredible love for me made me fall right back in love with him.

This is super simplifying our relationship- it wasn't easy- because I still had many feelings for my ex,  however Dan never pushed me. He held our relationship very openly and never made any demands. Yet he was always so good to me.
He still is.

He asked me to be his forever

We just celebrated being married for five years. He got me the most thoughtful gift. Our vows carved on wood.

The last line of our vows says "I promise to walk confidently with you on the Path God has chosen for us.

I had forgotten about this part. We wrote our vows together- and I love that before we had any idea of our life path, before we knew the trials we could meet we promised to walk confidently together.

Sometimes I wonder if had known what our path would hold, and how hard marriage truly is if I would have chosen to get married.
But I guess that is the truth about anything. If you aren't willing to endure the hard stuff- the good stuff gets missed. And man our good is SO sweet. Because we have lived in the desert, when we get to rest in the meadow we truly appreciate the calm, the cool and peace of life.

I am thankful every day for the Man I get to spend my life with. He is incredible. And he loves me so well.
Our life is beautiful, and so very messy. And I wouldn't have it any other way.


















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