Monday, April 14, 2014

Because there is nothing left to do

Lately I have been driven to my knees-when there is nothing left to do.
We are a nation of "Do-ers". A nation of "fixers". And I am very guilty of this. But somethings we just have no power to fix. No power to "do". And there are a number of these things in my life, and instead of feeling hopeless like I may have once I have begin to pray. And be thankful for what the Lord has already done...for places his faithfulness has shown through.
We have struggled with illness this winter. Okay- for the last year truly. But in this illness we have seen very few- almost no seizures. And before Emmaus' surgery, illness would increase her seizures fiercely. So while I am exhausted of the illness I am beyond grateful that her being ill doesn't bring on terrible seizures like they once did.
I am grateful for an infant that is strong. That fights illness like a champ. Who's body was formed correctly, typically- who learns quickly and does things naturally.

Last night was probably the worst "bedtime" we have ever had. Emmaus was freaking out, fighting even meds that usually help her relax. She was screaming her blood curdling scream that both pierces us to the core and infuriates me at the same time. (Don't get me wrong- it shouldn't make me mad, but it does). It worries us because she cannot communicate well. Is she scared? Is she hurting? Or is she just being dramatic because it is bedtime? But last night overall she was "off"- and so we were concerned.

It is impossible to watch her be so broken. To watch her hit her head over and over, pull her hair. To have such frustration and rage. And then two seconds later be kissing us. It brings out a sense of hopelessness. And fear. Fear of "what if she does this when she is big?"- she could really hurt herself! After putting her to bed for the second time with the same screaming session. I just sat outside her door and prayed. "God you are bigger than Emmaus at bedtime". "Jesus break in and bring calm to this child" "Jesus bring her the ability to communicate with us".
Prayers uttered not only as a desperate mother, but as a person confessing- I cannot "do" or "fix" in this situation.
I am powerless often when it comes to Emmaus. I have no solutions. No ideas.
I know God is bigger than her Genetic code. I know he longs to make her well. To bring healing and restoration to her body. To our lives.
And so to my knees I go. Believing the Lord will restore. Will heal. And when it gets too big too hairy- we send out the emergency text to our community asking them to join us in asking for peace in the moment. And healing and restoration for the long term.

And then we do what all sensible parents do. Grab a drink and head to the garage (because you know its 32 degrees mid april in KS- so we can't sit on the porch) to wait out the screaming. Because one can only listen to that sound for so long before they need to go live in the nut house.



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Tuesday, March 18, 2014

Lent

I thought about giving up something for Lent. But then couldn't choose what I should give up. I wanted it to be something meaningful. Something to improve my relationship with God, or others. I never did decide on anything. However, the more I thought about Lent. The More I realized it is a time to prepare our hearts for death and resurrection.

I have been so overwhelmed by the reality of this life.
The sickeness.
The death.
The injustice.
The brokenhearted.

There are so many that are hurting. So many wrong things that need to be made right.
So this Lent- I am thinking about how I can stand with people in hard places. How I can be a beacon of hope in the darkest corners.
How I can be the truth- The truth that God designed this world to be a perfect place. And because he wanted a relationship with Man he allowed free will. And us as humans messed that up. We choose Sin, we choose a life away from God.  And that allowed brokenness to enter the world.

But here is the good news. The battle has been won. Christ came. He died. And defeated death by rising again.
And he is returning. And when he does. Every tear will be wiped away. All sickness will End. And even Death will be undone.
And that is good news.
But in the meantime- I plan to try to live out Isaiah 61. To stand with those who need support. To be a beacon of home.

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Monday, March 17, 2014

Always remember and never forget

Because I just don't want to forget the details...And I am forgetful.

The way that Emmaus grabs my hand so I will walk along side her.
The way that Shiloh holds my head and smiles after a night feeding right before I slip her back into her bed.
The way that Shiloh spoons her bunny when you lay her in her crib.
The way that Emmaus slowly sticks her tongue out and leans in to "kiss me
The way that Emmaus purses her lips and shakes her head no. To every.single.question.I.ask.her. - Unless it has to do with food. Or Daniel Tiger.
The way Emmaus "runs" down the hall. Its is truly a very uncoordinated fast walk.
The way Shiloh is so interested in what is happening around her that she nurses & looks around then nurses some more- then repeats this about 100 times per feeding. - And how during almost all times I am nursing Shiloh, Emmaus must also sit on my lap- not because she is jealous, just because she senses some sort of bonding activity is happening- and she doesn't want to be left out.
How when Shiloh is excited she sits and almost jumps up and down she is rocking on her bottom so hard- she also dances to music this way
The way Emmaus cocks her head and smiles when I look back at her in the car.

I wish I could bottle up these things. For when they are grown, and their innocence beings to fade, for when the world is hard on them. These precious moments pass so fast.





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Sunday, March 16, 2014

Tall nonfat piping hot cup of Nostalgia

The hubby and I got to go on a date last week. We did a little shopping- which I'm sure was his first choice of activity (or not), but he was a good sport. And then had a fun dinner. And then to end the Evening we drove the familiar drive to our beloved Prairie Village Starbucks. I know that sounds stupid- that starbucks is a special place to us. However let me explain. First- this isn't any Starbucks. This specific store space has been a coffee shop since I was a very young girl. My mom used to take me there on occasion and get me a vanilla steamer. I thought I was so big drinking my "coffee". I remember sitting at the table, looking out the window, and being with my mom.  Little did I know that several years later I would move home from college to start nursing school and end up working in this same building, however now it was a Starbucks. It doesn't have a drive through, it is a small store, simple really. And makes Mission Kansas seem like the neighborhood where everyone knows one another- which is often the case.
About a month after I started working at this Starbucks we got a new manager. His name was Dan. He was kind, energetic, and the type of person who remembered your name. I introduced myself to him once, and I never remember him EVER mispronouncing my name after that.
I was coming out of a rough relationship, broken hearted, and weary.
He was a 20 year old who STILL had braces, was a total pot-head, smoked probably a pack a day and had the MOST ridiculous haircut I maybe have ever seen.
NOT MY TYPE.
However- I always enjoyed him. And remember being interested in him very early on.
I heard a rumor a few months ago that the store was moving, they were building a new store just across the parking lot, that would be much bigger and have a drive through. (The mother in me loves drive throughs, however my heart hurt a little knowing this little space would cease to exist).
So Dan and I took one last trip to the place we met, and our young love began.

We ordered our drinks and sat in the corner. Dan still remembered the loyal customer and his drink that sat in the chair across the store.
We talked about the day we met, when he played Santa for the store Christmas party, the first time we hung out, about how I always would go "study" at the store just to see him. How, once I traded into accidentily closing the store with him (after we were already dating secretly- he wrote the schedule and always made it so we didn't work together-since our relationship was a no-no) and how awkward it was. And how five minutes after we closed the store and both left I called him and we hung out- as two people dating, instead of a boss and his employee.

I found myself wondering if I had known then what our life would entail- would I have run for the hills? Or would I have geared up and headed into the storm. I am glad I didn't know. I tend to like the easy road.  I would have missed all the joy that comes from the hard in our lives. All the pain that has been so magnificently transformed into hope, and growth.

As we sat sipping our piping cups of nostalgia- I wished I could step back into those simpler times. (At least they seem simpler in hindsight- they had their own challenges I'm sure).  That we could hang out at the Lamar house on summer nights. That we could pick up and go on a road trip-because why not?   That we could exchange secret glances as we sat together with no agenda on the back porch of Starbucks.
Truth is- if I could return to that time. I would miss our now. Our little ones. Giggly girls. The beautiful life we live.



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Tuesday, January 21, 2014

Life Lessons Learned. Slowly

Every day I learn something new. My oldest, oh how she challenges me, as I am sure my youngest will too. I am learning life lessons. Slowly. But surely.
I am learning I must take care of myself- To get good rest, remember to eat- (and not just junk), remember to drink- (and not just coffee) And workout- (so I can be strong, healthy,well). All so I can care for my little girls, my husband, family and friends in return.

I am learning to be patient. To speak quietly, directly, and have high expectations, as well as a large amount of grace for Emmaus.
I am learning that my grief for her diagnosis comes in waves. It comes at unexpected times. And usually in those situations the Lord speaks to me quietly, directly, and with lots of grace.
I am learning to pray with my girls. To start the day with prayer, to model worship, to pray when we part, to pray when I am frustrated, or they are frustrated (or fussy-for Shiloh).
I am learning that "Special Needs" or not, there are expectations, and responsibilities that I need to have for Emmaus.


I am learning that babies get bored & have strong opinions. (Two things Emmaus never did as a baby)
I am learning that babies can be sleep trained. (Thank you sweet Jesus)
I am enjoying (and not taking for granted) the milestones being hit, (without hours and hours of practice).
I am enjoying the sweet kisses, that at only 5 months Shiloh "knows" me, and prefers me.


I am enjoying the budding sisterhood.
The lessons that will be learned and taught between the two of them.
The giggles that now go back and forth.
The Oh-So-Wet kisses they exchange.
I even love that Shiloh wanted Emmaus' attention the other day and Emmaus squealed in a not so kind way and gave her a harsh little wave- signaling "not right now little sister".  

Lots of lessons being learned around here.

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Tuesday, January 7, 2014

silence

I feel that my blog silence is deafening. I am sad that I haven't blogged about Halloween and how my girls were little penguins. AND SO CUTE. Or Thanksgiving- which I worked,  but we still did "Steaksgiving" with my family. Or Christmas even. Emmaus ended up in the ER in the morning due to respiratory distress- no worries she got to come home and enjoy a very sick kinda lame Christmas- that was so laid back and exactly the type of rest we needed. (We didn't even ever put our tree up) She got two gifts- she loved both. Shiloh got zero gifts (from us at least) cause...well cause she was 4 months old and  didn't know the difference- but we loved her well, snuggled her and that was more than enough for her!

I have been silent. And I am not sure why.

       Today while driving down the road I started tearing up. Overwhelmed with the blessings we have been given. In awe of how awesome our big girl is doing.  She remains seizure free. She is learning, and growing, and understanding more and more each day. She has WAY too many opinions. She is saying more words. As of January 1 she is only on one seizure med.  And there is a huge difference in her demeanor. We are lucky. And we are thankful. We will never be "out of the woods" with TS, and she still has many delays and much progress to be made, but we are so thrilled she is doing so well.
Then there is Shiloh. I cannot even tell you the Joy of getting to parent her. The rest I find in having a "typical" kid. The ease of not fearing seizures, or illness. Shiloh is smart and attentive, she  is concerned about
those around her- she seeks out Emmaus- tries to engage with her. It is the sweetest thing. She is a funny baby. She is an old soul.
I feel so lucky to have them. They are so very different- and so much fun. This hasn't been an easy transition, but I feel so thankful to have both of them.
I am thankful for a healthy 2013, a healthy birth, healthy baby, and Emmaus who has been (mostly) healthy. We have had every cold, strep throat, stomach bug (and dan has been sick about 100000 times) But we truly overall have been healthy. Nothing major.   And to that I let out a slow exhale and hope the same for 2014.

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Thursday, November 28, 2013

Baby in Summer Prozac By Fall

I laugh at my title but it is true. It was the same way with Emmaus. Everything for us goes so smoothly at first when we add a baby, but about 2-3 months in I start feeling it. I get back to work and can do okay in pure survival mode for about a month then BAM- our crazy life starts catching up with me and sad mommy/mean wife becomes a frequent house guest and it’s time to bust out the Prozac. Which I shamelessly admit, and take and love.  Makes me a happier mommy & nicer wife. 
It has been a hard transition this time. I feel like with Emmaus I had the hard time but Dan was consistently steady, and this time we are both feeling it. I started working at Children’s Mercy again right before I had Shiloh to pay for Emmaus’ pre-school and between the two Jobs and two babies and trying to get my small business started I think I bit off more than WE can chew.  
So a couple weeks ago with a VERY sad heart I put in my notice at New Birth Company. It truly was a hard decision. I will pick up a few more shifts a month at Children’s and trust God to provide the rest. Which He has always been faithful to do before, Abundantly.
I find myself once again wrestling with the reality of TS. Sad about what it has taken from our family. Frustrated really.  Angry about the extra costs,  angry about the extra work-both hours I work and extra work we have to do with Emmaus, Angry about the whole deal.  
Yet, when I look at our lives, at the path we are walking, I can clearly see how much I have learned. Lessons I am still learning every day.  We are fighting for progress. Hard places in my heart that slowly are being broken down as we continue this journey.  I see this little girl in front of me who is blossoming daily. She can be a hard child, but I can see her daily fighting for progress just as we are.  I see her trying her hardest to recall the words she knows. To use them appropriately. She signs the word, and when I ask her to say them I see her sweet rose-bud lips forming the letters even if I don’t always hear the words.  They are in there.
I think after two and a half years of holding my breath I have finally begun a very painful exhale.  Maybe painful is a dramatic word. But that is how it feels.  November 15  marked a year since Emmaus’ surgery,  a year we were warned would tell us much about how successful her surgery had been.  It has been successful beyond our expectations  and now as we have passed that milestone of a year, added a new baby- (who is developing so quickly it shows us truly how slowly Emmaus developed)-  I have begun to exhale and it is painful.  Heartbreaking truly, so much of that grief that I never processed- instead I shoved it aside and just “accepted our new normal” is having to be thought through.  Which truly is good. Necessary.  And it is a testament to how well she is doing that I can step back from “let’s just survive this” to process.
I am amazed every day at my sweet girls. I feel blessed beyond measure to have two girls.  I think The Lord knew how much joy two little girls would bring me and so gave me a second girl as a gift.  They are the sweetest sisters. Shiloh has begun to love Emmaus as much as Emmaus loves her- it is fun to see her change and develop and have preferences. And she DEFINITELY prefers Emmaus.
 I have written so much about Joy & Pain and how delicately they are intertwined. And once again I see that so clearly in my life these days.
Right now things feel raw and rough and the reality of being Emmaus’ parents, or maybe it’s just parenthood in general is a bit overwhelming.  But the joy, of our house being full of giggly little girls, who’s smiles light up even dark places is overwhelming in a positive way.
I can confidently say-
I know the Lord is faithful. He loves us. And he is bringing good things.


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