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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