Monday, April 25, 2016

Burning hearts

My current Jam https://www.youtube.com/watch?v=Q_cX0-wBoGs  (thanks JB)

Emmaus came into this world with a labor of love. A labor that was maybe my truest moments of communion with the Lord. A time where I knew the nearness of the Lord, and knew he heard and cared about my request. Where as her mother my body broke for the child I was carrying. With every contraction I allowed my body to submit to the process that was a new life entering the world. I pled with the Lord that night and into the next morning that she would be born healthy, that she would be spared from the burden of sickness we suspected was present in the very core of her genetic code.
Her name had been in my heart for a long time. I heard a sermon at church about the road to Emmaus. The idea behind the passage in Luke 24 is that after the resurrection Jesus walked with the disciples and they didn't recognize him. He spoke scriptures and truth to them, and then only after they left him did they realize it was him with them. They asked each other, “Were not our hearts burning within us while he talked with us on the road and opened the Scriptures to us?”
Dan and I were engaged the first time I brought up our hypothetical daughter Emmaus. He immediately said "hell-to-the-no" It's weird I get it. But then I just kept on it and he grew to love it too. And it was actually him when we first found out about tuberous sclerosis that said "well, her name is clearly Emmaus!" We knew along the road that we wouldn't always know the Lord was walking with us. But looking back we would surely be able to see he was there all the time.
This girl. She has increased my faith. She has caused my heart to burn for the Lord. To know that this world is temporary, broken, and full of sickness and death. But that this world is not my home. I was created for the world that is coming.
This week I have had to submit to the Lord that Emmaus is his child. I have once again had to say "Lord I trust you, and will submit to your will for her-for me." Emmaus in my life is a spiritual catalyst. She makes me seek the Lord, because there is no way for me to try to control her, or the outcome of her life. I cannot sit in fear over her life. Because I have no control over her life. This doesn't mean I haven't been afraid. Just that I cannot live in a place of fear.

Anyway- these are just my sleep deprived- ICU mom ramblings. 
I won't claim my Emmaus is changing others, or making their hearts burn for the Lord. But she has changed me. And that is enough. 



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Thursday, April 21, 2016

God is Good all the time.

First. This is my current Jam- You should give it a listen. The whole CD is great. But man- this song.
https://www.youtube.com/watch?v=nYP8b7p3I64

I could write all about the nitty gritty details of the happenings in this ICU room for the last several days- but instead I will just say Emmaus isn't doing well, and we covet your prayers for her, and us.
I don't know that we have ever faced such a trial. Everything about this sickness has tested and tried us. It has been harder than brain surgery, or endless seizures, developmental delays and autism. And at least for today I don't even have encouraging news. But I did just want to write out a thought real quickly.
Even through this. In crazy times like this. When every day for the last three we have gotten worse and worse new about Emmaus' health, even when she is not getting better, even as I sit in her ICU room where she lay pale, intubated, and sedated- I just want to make it clear that God is Good ALL THE TIME.
This sickness, this pain, her underlying tuberous sclerosis, this was not God's plan. These things are a result of brokenness, of sin being a part of this world. And while it is hard- really hard to live in the midst of this- God has taken care of this too. He has already sent his son, he has already paid the ultimate price to take care of this brokenness.
As her mom I have so many emotions. So many fears, and unknowns. The one things I do know I have a God Father that has not forgotten about me. He has not forgotten about Emmaus.

So- I know this is a bit preachy for my normal post. But this is what is on my heart today- so I figured I would share it.

"For God did not give us a spirit of timidity or fear, but He has given us a spirit of power and of love and of sound judgement and personal discipline abilities that result in a calm, well-balanced mind and self control"


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Sunday, March 27, 2016

Easter Sunday- When you are standing in "Saturday"

Easter
Have you seen this? 
It came up on my Instagram feed this weekend. It's the idea that we wait and mourn the resurrected Christ but Sunday is only a few short days away and we soon will celebrate the risen Lord. 

I have been in a little bit of a funk around Easter and today I think I finally realized why. 
I keep thinking about this "Sunday is coming" idea.  I am so thankful that we have the Hope of the Risen Lord. That my sin has been defeated and I am promised eternity because of his death and resurrection. 
But I keep coming back to "Saturday". 
What happens if even though it's Easter Sunday-I am stuck in a Saturday mindset. A place where brokenness is still very real- where sickness and death still sting. Where I am waiting and anticipating good things, but am still very aware we are in the midst of some tough stuff.  
Lately I have been hit hard with the reality of raising a child with significant special needs. And yesterday Shiloh asked for the first time why Emmaus doesn't talk. Dan explained why and she responded with "Maybe someday she will talk daddy?" 
These hard things feel very "Saturday" to me. 
I love that Shiloh's natural response was hope. And while I fully recognize the hope that Easter Sunday brings- my life is in a place of Saturday currently. 
A place of navigating the effects of having sweet Emmaus in our family. In learning how to navigate her disease with her sisters, the beginning of having to guide them through the delicate journey of understanding that comes with a sibling like Emmaus. 
I often think about eternity. Jesus coming back, or us joining him in heaven. And the health, healing and wholeness that will be. I think about Emmaus, her running and talking and never being sick. I think about the aches and pains that plague my body and my heart and how those won't exist when "Sunday" comes for the final time. 
I know I am not alone here. The reality of standing in Saturday- looking forward to the fact "Sunday" is coming- but knowing it may not come for a long time. 
I am thankful for the hope of Sunday. In the truth of the resurrected Lord. What I guess I am trying to say is this- if this Easter morning you are finding yourself in the depths of Saturday. In the midst of sickness or death and in the reality of this broken world, in a season of hard things. If you, like me are caught off guard by the sting of these things even on this Easter morning- you are not alone. 

Happy Easter dear friends! 
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Thursday, March 10, 2016

Boogers, Poop, and Work Clothes.

Today I spent probably five minutes trying to scrape a booger off the pantry door. Why the heck was there a booger on the pantry door? As I chatted with my best friend about my lengthy booger scraping session she said she once tried to scrape a multitude of boogers off her daughters wall with a paint scraper, and it turns out if you spray salt water on them they reconstitute into wet boogers and wipe right off. That woman seriously knows everything. It's kinda magic. (You're welcome for that tip-courtesy of her of course)
Tonight as Shiloh was sitting on the potty screaming "I DON'T HAVE TO POOP!!" (Even though she  had been doing the poop dance for an hour) she unrolled the ENTIRE roll of toilet paper. THE WHOLE ROLL. Oh and of course she's sitting on the potty without a stitch of clothing on cause it is the rule of two year olds everywhere that it is impossible to use the bathroom while wearing clothes. She then proceeded to try to negotiate TWO suckers if she pooped. Defeated I agreed to whatever she wanted if for the LOVE of all that is good and holy she would just poop. She earned exactly zero suckers.
Whenever we go out I take our diaper bag which is my college backpack so that we can fit all the stuff we need for three tiny humans. Sounds like a good idea huh? Well how is it every single time we are out the baby poops out of her diaper? I'm serious- how is that possible? And every single time I do not have a single diaper for her. And I have no wipes. In fact it turns out the diaper bag actually only has a pair of socks, 18 month pants (which no one has fit in for over a year) and a 4T t-shirt. Oh and an orange that is now petrified into some sort of potpourri or something. And lots of crumbs. Oh and I found a pair of Shiloh's shoes that had been MIA for about a month. (I will give myself a little credit- I do have Emmaus' emergency seizure med in the backpack - which even if I never have wipes- I do ALWAYS have that)
Today I literally wiped spit up off my baby with a sock I found in my car that one of my other children had at some point taken off. Because I couldn't even find a napkin.
I truly used to be much more organized. But that was back when I only had one child. I am not organized by nature so it's just gone downhill with each baby.
This morning as we tried to give Emmaus her meds (she's currently on a med strike so it's SUPER fun to give her all her meds) Dan put her on his lap, and when he lifted her off when we were done he was covered in oatmeal that had been stuck to her bottom that we hadn't noticed. Which leads me to this reality- whenever I get dressed for work it is only a matter of minutes before someone comes and wipes snot on me or the baby spits up on me. I can stay in PJ's all day and that never happens- I put on work clothes- BAM. SNOT EVERYWHERE.  (Luckily it's just scrubs and I'm probably gonna go to work and get snot on me anyway- but seriously. every.single.time)

I often find myself just standing in my living room thinking "Is this really my life? What is going on right now?"
I don't even know why I'm writing about this right now. Although-If you have a kid, and definitely if you have more than one you can probably relate.
So my serious questions are.
1. Why is there so much snot in parenting?
2. Doesn't it get cold stripping down to your birthday suit every time you go potty?
3. Does anyone have an actually good diaper bag system? (And I mean someone who has multiple kids- non of which are self sufficient- and all wear different sizes ect)
4. I know you are judging a little for wiping my kid up with sock- yeah it's okay- I am too.

That's all. It's almost the weekend people. Hang in there!

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Sunday, March 6, 2016

From the overflow of the heart the mouth speaks.

It has taken me decades to calm my words. You know those powerful little things that so easily come flowing out of our mouths? And still I often fail at filtering my thoughts before they flow from my lips. I am often unaware of my tone, and have to apologize for "being snippy" as Dan calls it.

You know that old adage "the apple doesn't fall far from the tree?"
Well I have an apple to my tree. Her name is Shiloh.

At two and a half years old that girl is beyond verbal. Her though processes surprise me every day and to say she is a sponge soaking in every detail, every word, every situation is probably an understatement.
We have been working a lot with Shiloh on using her words wisely. I am still not sure when I give her my big speech of "how we speak to others" if she really gets it. But I am going to keep giving it anyway.
At two years old it baffles me that she can spew such fire out of that sweet little mouth.  And then turn around and say such sweet encouraging things a few minutes later.
It reminds me of the true power that lies in our words. And as I strive as her mama to shape her heart it forces me to check on the state of my own heart..
Good comes from a good man because of the riches he has in his heart. Sin comes from a sinful man because of the sin he has in his heart. The mouth speaks of what the heart is full of. Luke 6:45)
To check what is coming out of my mouth.
Am I filling my heart with truth and life? Or am I letting my sinful, selfish nature rule?
Our words can bring life or death. And it is up to us to make sure our hearts are full of things that even in our weak moments would speak life.

To shape, and mold and encourage our Shiloh will not be an easy task. She is emotional and passionate, she knows what she wants, her likes and dislikes and she is firm in those opinions.
She can be so loving, so kind and tender.
She has the unique ability to sway the mood of a room with her mood, with her actions.
To engage those who typically sit on the sidelines.

I have a feeling she will be the most anchored piece in our "cord of three". So to teach her where her strength comes from, that her true anchor is the Lord, it will not be easy. And in parenting her, teaching her- and realizing in parenting we must first check on ourselves. It's sure a humbling experience!

 She will do great things. She will march to her own beat, and lead those around her. We just have to tame the wild, unbridled tongue. (Although I'm sure it is a journey that will take decades)




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Thursday, February 25, 2016

Reflections from 20.

I have been thinking a lot about turning 30. I didn't realize how much it would make me think about all that happened in my 20's. So I thought in honor of entering the next decade of my life I would share a few of the major things I learned in the last.
Overall I think my 20's was a decade of beginnings. I began a career, a marriage, and parenthood. I believe my 30's will focus a lot on growing these things.
So here we go- things I've learned.



On Love
Don't make someone your priority if you are just their option. No matter how hard you try, you cannot make someone love you the way you love them. Loving them really well does not mean they will love you well. Sometimes it is really hard, but walking away is probably the right choice.

Love is not a feeling- it is a choice. You have to wake up every day and CHOOSE to love your spouse. And if you can find someone who is willing to do the same with you, who you really enjoy, and who makes you happy. MARRY THEM. IMMEDIATELY.

On Money
Don't owe people money. Not the car people, or the student loan people, or the people at VISA, CHASE, AMX or MASTERCARD. Or your mom or dad, or sweet little grandma. Just don't owe people money. Work hard. Pay off the money you owe, and then don't owe people money ever again. It's weird to be debt free- and it's amazing.

Give your money away generously. If someone needs something and you can, buy it for them. Skip starbucks, resturaunts, and other luxuries- take care of the people around you. (And then they will take care of you too)

Prepare for the unknown- IE unforseen medical expenses- yes it stinks to spend your savings on medical expenses, but not having the added stress of not knowing where the money will come from is kinda a big deal.

On Sickness/ Loss
Sickness happens. Genetic disorders happen. Autism happens. People die.  It wasn't "Gods plan". In fact, HIS plan didn't include sickness- because he didn't intend for this world to be a place of sin and brokeness. However, it is. Sickness just happens. It's not your fault. Just do your best with the card's you've been dealt. Try to learn and grown and prosper in all circumstances. Cry when you need to. Be a comforter to others when that is called for. When you feel like you might drown "Just keep swimming".

On Rest/Work
Work from your Rest. Make having a day of rest a TOP priority in your life. Four hours of doing something that seems restful to you once a week can make all the difference- more than four hours- is seriously amazing! When I say have a day of rest- I mean PUT IN ON OUR CALENDAR- and schedule around it, it is that important.
It is okay to say no to things. An overly packed calendar doesn't really mean a fuller life, just a busier one.

On God
God loves me so incredibly much. He wants good things for me. And even if my plan, and what happens are really really different, it doesn't change the goodness of God. There aren't many constants in life. But the truth that God Loves me, and He wants good things for me are some that never change.


In general
Be kind to others- you catch more flies with honey than vinegar.
Be honest. (While still being kind)
Be generous.



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Wednesday, February 10, 2016

Bed time reflections.

I don't often put Emmaus to bed. It just happens that as our nightly rhythms line up I generally put the baby to bed and then spend some quality time just with Shiloh before it's her turn, and Dan takes care putting Emmaus to bed.
But a couple nights ago I was on triple duty and got to put Emmaus to bed. We have a very specific rhythm with her as sleeping in general isn't her strength and bedtime has always been rough. Currently we tuck her in and sit on the floor or her room till she falls asleep. As I sat on her floor in the dark with one hand resting gently on her head I began thinking about Emmaus' life, and how it has changed me.
I pondered the struggles we daily face, and the hope and beautiful life that comes with it. Sometimes I am still surprised by the fact I have a child with Tuberous Sclerosis. That at the "ripe old age" of 24 my body had a genetic hiccup while Emmaus was being formed- and TS was the result. It just seems crazy to me.
And while TS is something I wish we didn't have to deal with, the lessons it has taught, the community it has gathered, I wouldn't give that up.
I considered my girl, somewhat trapped in her own body. Limited by her lack of speech yet, so aware of what she wants and needs. I considered how she has changed my perspective. How she has taken my overly competitive nature and shut it down. How she has taught me to not judge others on what appears to be, because we truly never know what is going on in someone else's life, or their home. She has taught me to be compassionate to those around me, to lend a helping hand whenever possible. To give to others generously, because so many times we have been on the receiving end.
I sat and prayed for her. For hope to be her story. For her life to be abundantly happy! For words to form freely and be expressed freely. For her to read and write.
In the chaos of my current life stage it is rare to have a completely quiet focused time. It was a sweet time to sit and reflect and just pray for her.




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