Monday, December 1, 2014

Cognitive, Schmognitive

So, my princess-who-I-love-more-than-life-itself has reached an exciting new developmental milestone.

She can now be willfully disobedient.

I was excited at first.

See, she can now follow directions!  Her Royal Highness can now, when asked to, pick something up and throw it in the garbage, or go and get something and bring it to Mommy, or hang up her coat at therapy, or go and turn off the light (which she has just turned on ... again ...)

Which is really great!

Except

Now, she has gotten bored with showing off the fact that she CAN follow directions and, with the grin of the Cheshire Cat, takes a moment to decide whether or not she WILL follow directions

"Yes, Mother, I realize you want me to pick up the crayons I just threw on the ground, but you make funny noises when I DON'T pick up the crayons I just threw on the ground."

And my favorite ...

When she throws something she shouldn't throw, her consequence is that she needs to pick it up.  She knows this.  She also, therefore, knows the sign for "pick up"

And ... if she's feeling spunky ...

She'll throw something, I'll sign for her to pick it up, she'll laugh, and then she'll sign "You!  Pick up!"

Her therapists say I should be VERY proud of the cognitive gains she's making.  They say that the cognitive ability required to be willfully defiant is a huge milestone for Emma.

My dear friend said it best:
Cognitive, schmognitive

At least she's cute! :)

(ok ... maybe i'm a little proud of her ... but don't tell her, okay?)

Tuesday, November 18, 2014

It was wonderful :)

My little family had an absolutely delightful day celebrating the Bear's birthday this weekend

We started off the morning with an all-out sensory arts and crafts time, which included new paints and stickers as a present from Big Brother.



 As with most things, there is a Mommy way of doing things, and a Daddy way of doing things ...







Daddy's way, for the win :)



"Hm. My hands appear to be a bit messy."

"You guys may have lost your minds, but I'm not complaining!"
 After awhile, Mommy had the sense to change into one of Daddy's old grubby T-shirts and just embrace the mess!  It was lovely :)

Charlie, of course, got in on the action with a Star Wars themed watercolor masterpiece.

And when the Bear got cleaned up a bit, she opened her stickers from Big Brother and carefully went about selection the perfect spot for each one of them on her fresh new picture.

"Um, Daddy?"


A colorful, artistic triumph!


Next, we got all cleaned up and went out to find some bowling for our family.  Emma truly loves it!  She sets up her ball on the ramp, Big Brother lines it up for her, and she enthusiastically pushes it down the lane




 She watches her ball go down to the pins ... and does a little Bear dance as the pins crash down.  It's adorable!


Loves from Daddy


 Loves from Big Brother ... who was focusing more on her smile than his own :)


"Ok, Mom!  I think the moment has been appropriately captured!  What's next?"


Off to find some frozen yogurt!

Emma doesn't eat much by mouth, but she is willing to make an exception when it's something cold and sweet.  She LOVES ice cream and frozen yogurt!



 And then we headed home for a long winter's nap.  She was exhausted!



It was truly a wonderful day.  Happy birthday to my Emma!  We love her so much, and she brings us SO much joy!


Wednesday, November 12, 2014

Happy. Birthday.

Seriously, how is this girl six years old?

Ok, if you know me at all, you know I think my daughter is amazing.  I'm proud of her and blessed to be her mom and love her to the moon and back.

But can I be real with you and tell you that I've really been sad today?

Birthdays are hard.  There are a lot of "shoulds" and "supposed tos" on birthdays.  They are milestones that mark a vast difference between Emma in my world and the Emma that "would have been"

Of course, "would have beens" and "shoulds" are not helpful.

But that doesn't mean that my emotions are any less real.

And I've been sad.

I'll be fine, and the Bear will, too (despite the visit to our Pediatrician Who We Love today to get some medicine for a rash she's had for awhile ...).

We're going to declare Saturday our birthday celebration day and spend a lot of time doing things a Bear will love.

Hopefully then I'll post a more happy birthday post.

For today, I love her and I hope she's having a great day ... I am not, and that's okay.

Thursday, October 30, 2014

Snapshots of my Wednesday Evening

We walked into church and Charlie ran off to drama practice for the Christmas musical.  Emma and I had some time to wait until our respective Wednesday night programs at church started, so we joined some other families sitting at small tables eating dinner.

Let me just say from the get-go that nothing and everything about the next 45 minutes was remarkable or outstanding.  It's just an evening in the life of a very special girl in a place that has learned how to love her well.


  • She walked up to a table where some of her friends were eating.  These children have known Emma all their lives, so it is nothing but normal to them that they immediately and without prompting reached over and handed Emma a chip for one hand and a tomato slice for the other.  They know Emma won't eat them, but they offered her something "squishy" to play with because they know she likes the feeling of food.



  • The youngest among them is just learning to talk, and he was thrilled to announce to me that "Emma TAKED it!" when he offered her his chip.



  • A grown-up friend saw her dancing with her chips and yelled, "BEAR!" from across the room.  She danced excitedly as he ran up to her to dance her around, thrilled that he didn't have to be as gentle with her anymore now that all restrictions are lifted from her spinal surgery recovery.  He loves to make her laugh.



  • An adult from another family was waiting for his children in drama practice also and looking at his smart phone.  Emma walked up to him and looked at his phone with him.  As they looked at pictures together, Emma sweetly laid her head on his shoulder.



  • When Emma was finished looking at pictures, she found yet another mom who loves her who had a bag of chips at her table.  I told Emma to "ask nicely" if she wanted one, and Emma patted her chest immediately in an unmistakable "Please, can I have one?" Emma-sign.  I got to actually engage in a grown-up conversation at that point, and 10 minutes later, I found that Emma had made quite a collection of chips on a side-table she claimed as hers.  Manners get you what you want, apparently. :)



  • After we cleaned up the chips, I sat her down at one of the tables to get her a dose of food for dinner.  While I was tube-feeding her food, she grabbed her big water syringe.  Without missing a beat, she pointed the syringe at her belly and pushed the plunger down.  This would have been hugely effective, had the syringe actually been connected to her G-tube.  As it was, she just sprayed herself with water.  She looked around at everyone with a look that demanded to know WHO had gotten her all wet!  Everyone around us understood how cool and hilarious that moment was and we laughed.



  • We went into the bathroom to dry off.  There's a step-stool in that bathroom so kids can wash their hands, and, after a quick change, she walked right up to those steps, climbed up by herself, reached up and turned the water on by herself (I'm in trouble), and scrubbed her hands under the water.  



  • Outside the bathroom, a dear friend of mine was standing next to the drinking fountains.  Emma grabbed her hand and led her to the fountain, clearly asking her to turn it on.  My friend showed Emma how to work the drinking fountain.  Emma is a quick learner when motivated.  I'm still pretending to be mad at my friend for teaching Emma that ... 



  • Eventually I led Emma away from the drinking fountain, passed the elevator.  Emma has never explored those particular buttons before.  She decided to see what would happen if she pressed one. Imagine her delight when a light turned on!  Then, after a while, the elevator door opened.  The chip-providing children and their mother and I stood back for awhile and watched to see what Emma would do.  We all knew that Emma doesn't like to step across thresholds between one surface and another (because that's common knowledge, right?), so I wanted to know if that fear would be enough to keep her out of the elevator.  She stood with her hand on the doorway, trying to decide if her foot could step on to the new surface.  She stepped a toe in a few times.  The youngest little guy started saying, "Emma!  No go ON!"  He was very concerned about his friend.  We assured him that we wouldn't let her get stuck in the elevator and watched, waiting to see if Emma's bravery would carry her across that threshold.  Two more tries.  Finally, yes, Emma was able to get on the elevator!



  • Someone made a comment about how great Emma is doing lately and I burst out singing "A Whole New World!" from Aladdin.  Because if you can't handle that I randomly burst into song during our conversations, then we can't be friends :)



  • Emma needed a moment by herself at this point, to process the fact that her elevator plans had been foiled.  She walked up to a stone-textured column and tilted her head back and forth, watching the patterns in the stone change.  Our pastor walked up and gave me a hug and then made a joke about Emma making friends with "one of the pillars of the church" and I laughed.  If you love Emma, you are allowed to joke about it when she has her "I just need to go over here and talk to this wall" moments.  



  • Finally, it was time to take Emma to her class.  A very kind adult helps Emma one-on-one in her preschool class on Wednesday nights.  Emma was pretty tired after all her adventures, and needed some time to just lie down for a bit.  Her helper asked me what she should do, which I appreciated, but mostly I just appreciated that, even though Emma's behavior is not "normal," she has people who love her who are going to stick with her through the weirdness to help her be a part of the class. 


Everything and nothing about that evening was amazing.  These 'snapshot' moments come together as a beautiful collage, painting a picture of a place full of every-day flawed people being used by God.  If we are the body of Christ, we take seriously the fact that some of us are 'hands' and some of us are 'ears' and some of us are 'feet'.  And Paul wrote, "the hand can't say to the foot, 'I don't need you!'"  Emma needs us, and we all need her, too.  She marches around her world, changing it by her presence, and making us all better people as she goes.

Monday, October 13, 2014

Dear 22-year-old self, someday you will be intensely proud of this ...

So I'm in a waiting room with my two wonderful children.  It's a waiting room we have been in many times.

Emma finds the restroom and grabs my hand to bring me to the sink to wash her hands.  She loves washing her hands (read: playing in the bubbles).  We wash her hands and I help her down off the stool, where she discovers, to her immense delight, that she is now tall enough to reach the light switch.  I recognize the opportunity to practice her new "on" and "off" sign language, so she gets to play with the light switch a couple of times.

Then I tell her it's time to be all done.

We walk back out to the waiting room and I close the door.

She walks back over to the door and tries to open it.  She fails.

She signs to me: "Open!"

I sign back: "No.  All done."

She is not giving up.  She walks over to me and tries to drag me to the door.  I sign: "Stop.  No"

She stops, but is still not giving up.  She looks back at the restroom door, and thinks for a moment about how to get back into that magical place with BOTH a light switch AND a bubbly water table to play in.

She looks at me intently and signs "potty"

She then summons all her strength and concentration ... and manages the most hysterical TOOT I have ever heard in my life.

Triumph!  With a huge smile, she signs "potty" again, this time grabbing my hand, which is her way of communicating that she "NEEDS" a diaper change.

I sigh.  I concede defeat.  To the sound of her glorious laughter, I pretend to change the not-so-dirty diaper, and then lift her back down to the floor.  With a strut that would put the winner of any professional sport to shame, she swaggers her sassy self right on over to the sink.  She turns around, grins, and signs: "Help.  Up"

Because now we need to wash our hands

And then we'll have to turn off the light.

Emma = 1    Mommy = 0

Tuesday, September 30, 2014

Adrenaline Junkie

Remember that ridiculous 90s action movie in which a bus cannot go any slower than 55 mph or else a bomb will explode?

"pop quiz, hot shot"

At the end of the movie (spoiler alert?) our hero and the lovely lady, who have been stuck on the moving bus together for hours, finally land safely in the wreckage of the bus.  The music swells, and they share their first kiss ... and he romantically says ...

"I hear relationships based on intense situations never work"

she responds with something silly and they kiss again

snicker snicker ... i am ashamed to say i loved that movie when i was young ...

I thought about that idea this morning, though ... well ... actually the line just randomly popped into my head and it got me thinking ...

Is my relationship with God based solely on intense situations?

yup ... I just did that ... but now that we're here, let's be done with that analogy, shall we?

The past few months have been ... 'intense' seems like the wrong word ... it's been hell.  My family and I have been through the wringer this summer/fall with everything going on with Emma.

And God has been so faithful to sustain us!  He's carried us and strengthened us and answered our prayers and it's been amazing!

And now life is settling down.  Emma is slowly working on regaining her strength, and her skills are improving daily.  Josh and I have faith that we will catch up on sleep someday, and the number of snuggles Charlie needs on any given day is back to normal as well.  The biggest problem in my life right now is the fact that the city I live in is re-paving my street, so I can't park in my driveway ... which I think would be best characterized as a "first world problem"

So why are you downcast, o my soul? (ps 42)

It hit me hardest yesterday.  I couldn't figure out why, but I felt terrible.  I felt fat, ugly, useless, annoying ... I was in a "funk," I guess, and it was bad.

As a dear pants for water, so my soul thirsts for you, O God. (ps 42)

Life can get intense sometimes.  And during those times, it is crucial that I turn to the Lord.

But in the grassy meadows of life, where I am not in a valley or on a hilltop, I need Him just as much.

I've seen me without my Jesus.  It's not pretty.

And so in this season, and in whatever season comes next ...

The Lord is my shepherd, I have everything I need.  He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. (ps 23)  

I will yet praise Him, my Savior and my God (ps 42)

Thursday, September 18, 2014

I'm amazed!

A friend of mine put it well; God is good and amazing and loving and deserves honor and praise regardless of our circumstances.  But I sure do love it when He shows off a little bit :)

I am so thankful for how well things are going!

You would never know that it's only been two weeks since Emma's surgery.  She's totally got her spunk back.  With all that she's been through, her little spirit just amazes me.

AND she's basically regained all of her previous skills!

The only thing slowing her down right now is her stamina/confidence.  She used to be able to walk across our entire backyard without help.  Now she's hesitant to do so without a finger to hold.  I'm not sure if it's that she's not feeling confident or if it's just an issue of decreased muscle tone, but I'm not worried :)

She's a tough cookie.

And it's pretty fun to see the side benefits of this surgery that no one expected to be impacted.  Like, she's taller!  I'm not sure if it's that she's just standing up straighter or if it's actually that she's taller, but everyone who sees her often has noticed it.  And my favorite development is in her eyes.  Her eyes are brighter, open wider, and connecting with the world so much more than they have in a long time.  Her teachers say that, at school, she's so much more content and attentive and willing to wait her turn and participating beautifully.

(it's at this point that i'm choosing to stay away from a particularly nasty brand of 'mom guilt' ... apparently she's been in pain for awhile ... seeing how much better she feels now underscores for me how bad she felt before ... and 'mom guilt' says i should have figured it out sooner ... but like i said, i'm choosing, minute by minute, to let that go ... we found a problem and worked to fix it, end of story ... letting go of the guilt)

Praise God for His amazing work in my little girl!  His work in her life moves me to praise!

Friday, September 12, 2014

And ... exhale

It's a beautifully chilly day here in Minnesota.  Gray and cloudy.  


It's one of those rare cloudy days where you can actually see the rays of the sun stream down in lines like the pictures kids draw with crayons.



You don't get the see those sun rays without the clouds







I'm a bit late in announcing this because I was sick, but we're home :)  The moment Emma was settled in her own bed, I collapsed into mine with a fever and didn't rejoin the land of the living for two days.

This month has been really hard.  Really hard.  

But, oh, the blessings!

We've been so supported, and we're so thankful!

And now that she's home, Emma is standing taller than she ever has, and people are even saying her eyes are open wider.

She's doing so great.

Praise God from whom all blessings flow.  He daily bears our burdens.

And He carries us

Not that I like needing to be carried :)

But sometimes the Son's light shines brightest through the clouds

Sunday, September 7, 2014

Sunday afternoon update

It's been a long week.

Emma earned herself at least one more night in the hospital last night.  She is having trouble keeping her oxygen levels up when she sleeps.  She's responding to treatment, and everyone seems optimistic that it's just taking her system a little extra time to wake up after being sedated for that long.

I hate that she's been through all this, but she's taking it like a champ.  Her favorite person in the hospital is the guy who comes to do her "back massage" routine.  She gets very mellow after it's done :)

So, specific prayer requests:


  • That Josh and Charlie and I would keep our spirits up.  This is getting long.
  • That Emma's lungs would supply her body all the oxygen she needs tonight so that we can go home tomorrow.
  • That her gut would continue to not surprise us.  We're taking things very slowly there and things seem to be going well, although she does still need to produce "evidence" that everything is back in working order 
  • That we would not go home too early.
Huge praise and thanksgiving for awesome nurses and an amazing support system surrounding us this week!  Thank you thank you thank you!

Saturday, September 6, 2014

Better?

Emma appears to be on the mend. It appears the drugs are out of her system and now the jitters are gone. She doused herself and me in pee last night. That was fun! She needed oxygen all night but just took a nap without oxygen, so we're done with that for now. She slept in till 10 this morning and then had some chest PT. They basically vibrate on her chest and break up the crud in her lungs. She got some good stuff up after that and she actually liked the "massage". We're currently doing that again and she's in heaven. So the feedings have restarted slowly and we're back on track. Keep the prayers coming!

Friday, September 5, 2014

Don't do drugs!

Emma is giving a run for the money this evening.
Emma doesn't appreciate the cocktail we've been giving her. Last night she wasn't comfortable in her own skin. We think it was a bad reaction to Valium. She did finally fall asleep for a couple hours in the middle of the night. We're all a little fuzzy today!
So we got the boot from PICU (intensive care) and now we're on the neurosciences floor. We started slowly putting fluids her stomach and that went well all afternoon and we all got a nap.
This evening she's decided to throw up the white flag. Her oxygen started dropping, she started wretching and even passed out at one point. The conclusion is her little body is struggling with the drugs and the breathing tube removal and lack of sleep.......it's too much. So the feedings have stopped and she's getting supplemental oxygen and she's resting. We've had great support while we've been here, and we know that God is here with her tonight and we pray he continues to watch over our peanut.

Thursday, September 4, 2014

Speechless



In the words of our little bear, hahahahahahHA! We are blown away and amazed! Emma is awake and smiling and giving high fives and signing her desire to 'go go'. We we're prepared for today's wake up to be very difficult for Emma, and therefore us. And, once again, the diva has come through with flying colors! If it wasn't for the fact that she's on a lot of pain meds and is a drunken monkey, we'd say we have our bear back. She's 'feisty' and 'strong', in the words of her care team. Apparently prayers are working, so here's our next request: tomorrow we get to restart the gut. That's the thing that will determine the duration of our stay. Please pray that this awesome trend continues and she surprises us again!

Wednesday, September 3, 2014

So far, so good!



Surgery went well. As planned, she is still sedated in ICU. We'll probably start to wake her up as soon as tomorrow, but since she has to lie flat, we're glad she's asleep for now. The surgeon just came in and wanted to make sure all of her limbs we're moving properly, so they lifted the sedation just enough to see Emma get mad. And get mad she did! Everything is working great! Tomorrow's wake up may be rough. We're praying for a smooth transition. In the mean time, we've changed her button, we're working on a pedicure, we did her hair, and we'll see what other torturous items we can check off while she's out.

Tuesday, September 2, 2014

Wait ... so, WHAT'S happening?

A couple of people have asked, so here's the short version of how we ended up doing surgery:

End of June/beginning of July, Emma started having lots of trouble walking.  It took us awhile to take it seriously because it started around the same time as a couple of small bouts with various viruses, so we thought she was just cuddling because she didn't feel good.

Beginning of August, we finally started to believe that she really COULDN'T walk.

We did lots of tests.  Sedated MRI of her brain and ears, vision tests.  Finally ended up in neurology.

Neurologist ordered a spine MRI and an EMG, which checks nerves.

EMG was inconclusive, but results may indicate that she had Guillian Barre Syndrome, which is a nervous system reaction to a virus and goes away on it's own.

MRI showed a tethered spinal cord.

We will never know if she had Guillian Barre or if the spinal cord was causing the issue.  She's been doing a lot better in the last two weeks or so, so I suspect that an illness played a role in all this, but now that we've found the tethered cord, we can't ignore it.

Surgery to release the tethering will open up the dural sac which holds the fluid around the spinal cord.  Anytime that sac is opened, a patient has to lay flat for the first 48 hours of recovery.  Emma won't be able to do that willingly, so we are going to have to keep her sedated for a day or two.  Because of Emma's airway issues, mild sedation is not an option, so she'll go straight from the OR to ICU where she'll stay intubated and under full sedation.

After we wake her up, I'm guessing we won't take the IV out until we see evidence (poop) that her gut has "woken up"  ... this has been a problem for Emma even after she's been out for an hour or two ... so I have no idea what we'll be facing when she wakes up.

I don't know what an ICU stay looks like at this hospital, but I'll update here when I can.

I'm sad that we have to do this, but the grace of God is holding anxiety at bay.

Actually, right now, my primary emotion is "Game on!"

Thank you so much for praying!


Tuesday, August 26, 2014

"Just" pray

Emma passed her pre-op appointment this morning for her surgery next week.  It's starting to feel a lot more real, which is the point where I start to get a lot more weepy.  There have been lots of surgeries in that past 5 years, some big some little ... this one's big.

People ask, "What can I do?"

That's a hard question to answer.

We feel very blessed when people bring meals and we are so thankful when Emma has visitors in the hospital (although I'm not sure what that will look like this time around, seeing as she'll be in ICU, sedated ...).  And I am grateful for the people who can help with our little Dude while his sister is in the hospital recovering and for the people who offer support in many ways once she's home.

Beyond that, I find myself saying, "Just pray for (whatever I'm worrying about at that particular moment)"

"Just" pray.

"Just" go before the God of the universe and bring a request before him on behalf of my little girl.

"Just" enter His throne room with a humble petition for healing.

"Just" call the Great Physician into a small operating room to oversee and protect her body.

"Just" ask the Wonderful Counselor and Prince of Peace to work miracles in Mom and Dad's hearts.

"Just"

I mean, I get it that the phrase "just pray" is often spoken to mean "there is nothing else you have the power to do to help the situation."  But, additionally, I think it sometimes diminishes the power of prayer.

Because there is, in my opinion, a BIG difference between an off-handed "Christian platitude" and actually kneeling before the God who sent his Son to walk on this planet to heal it, acknowledging His power to move and begging him to do so.

There's a lot I don't understand about prayer.  I don't get "how it works" in many ways.

But I know that there is power in prayer.

And I know that we are commanded to do it.

And I brings me to tears when I think about the people who approach the Throne of Grace with confidence, asking our Father to help our Emma.  He's so much bigger than the big-ness of this surgery and He loves that girl so fiercely ... I am confident of his involvement in the situation :)

So THANK YOU!

Very specifically, if you feel led to pray:


  • Pray for the Spirit to guide my parenting in the next week.  Charlie still needs his Mom :)
  • Pray for no "bumps in the road" with some blood work that will need to be done before the procedure begins.  
  • Pray for Emma to have no adverse tummy reactions to the antibiotics that they will be giving her throughout the surgery
  • Pray for the IV team's hands 
  • Pray for Emma's airway and the anesthesia team's intubation process
  • Pray for the nerves in Emma's spinal cord to be protected as they release the tethered part
  • Pray for the moment Mom and Dad meet Emma in the ICU while she is still sedated and intubated
  • Pray for wisdom as the doctors balance all the factors in the decision of how long to keep Emma sedated.
  • Pray for the process of waking Emma up
  • Pray for Emma's gut.  Her GI system does not like sedation.
  • Pray for pain management as she wakes up
  • Pray for recovery
  • Pray for a full return of her motor skills.
  • Pray that God is glorified by the outcome, whatever happens. 


I am in awe of the fact that our God hears and answers prayer.  He is an awesome God.



Tuesday, August 19, 2014

Not Sad

I had a really really great weekend.

I had good times with family and good times with friends.  We didn't go anywhere on vacation or do anything expensive or extravagant ... we just had a very nice weekend.

There was even a moment where some people I love and I spontaneously got out some musical instruments and sat and played and sang and were goofy and maybe even worshiped a little bit ... impromptu living room church :)

And I was filled with joy.

It feels a little weird, having this surgery looming on the horizon.  It's going to be awful.  She's going to be sedated for a day or two after surgery.  I'm going to have to see her intubated.  No mother should ever have to see that.

And I am sad that it has to happen.  I'm mad that it has to happen.  I've shouted swear words at Satan and shook a bitter fist at this horribly broken world and wept at the sin that breaks this world and HATED the fact that this surgery has to happen.

And those sad moments feel ... correct.  Justified.  It feels like I'm not only allowed to be sad, but I'm supposed to be sad about it.

And that's okay.

But what confuses me is the fact that there are many many moments when I am NOT sad.

I laughed at Emma's silly dancing this weekend, and it wasn't bittersweet ... shouldn't I be sadder?

I danced a silly jig with a friend when practicing for worship team this weekend ... shouldn't my heart be heavier?

I listened to a loved one's happy story and was honestly genuinely happy with them ... shouldn't I be more bitter?

I praised a great God, who is altogether Holy, with my church I love ... shouldn't I be less joyful?

NO

If you were to see me at Starbucks with a friend this week, you may see me sad about this chapter in Emma's journey ... but you'd be more likely to see me laughing and smiling.

And that sort of makes me feel self-conscious. For some reason, I have this nagging worry that I should be sadder.  I feel like, if someone were to see me laughing at Starbucks, they would wonder if I'm taking this situation seriously enough.

That sounds crazy, typing it out ... am I the only one who feels that way sometimes?

Anyway, here's the deal: sometimes we wonder how a good God could let bad things happen.  And that's a question worth asking.

But sometimes, I feel the opposite question nagging me.  I feel the weight of this broken world; I feel it in my family and in the newspapers and in the people I love around me, and I wonder how there is ever joy.

The world is broken.  I know of no one who would argue that we live in a world that is "as it should be."

But, for some reason, there is joy.

It's confusing, isn't it?

Why on earth would there be joy?  Or laughter?  Or love?  

We have this treasure in broken vessels to show that it is from God and not from us

Even in the midst of stinky stuff, I am SO thankful for God-given joy

Monday, August 11, 2014

Another Emma update...

(...or, a list of things God is bigger than)

Last Thursday, Emma had a couple of sedated procedures to figure out why walking has been a struggle lately.

Josh was out of town, but Jesus-with-skin-on showed up in the form of some very very dear people to me, reminding me that I am loved and never alone.

The first test (EMG) was measuring nerve reaction to stimulus in her legs.  She looked like a pin cushion when she came out, so I was so glad she was asleep!

That test showed indications that she may be recovering from a bout of Guillain Barre Syndrome, which would explain the trouble walking.

But the second test, an MRI, showed that Emma has a tethered spinal cord, which could also explain the walking issue.

I'm not sure if we'll ever know which issue caused the symptoms, but it doesn't really matter at this point. The Guillain Barre Syndrome will go away on it's own, and the spinal cord issue requires surgery.

Even if the spinal cord issue is not to blame for the trouble right now, it will be a problem later.  So we need to take care of it now ...

And, just for good measure, we're having some GI issues today, landing us at the hospital for some x-rays just to be sure everything's okay in there.  It is, and we're home now.  Just another long day.

Remember Veggie Tales?
God is bigger than the boogeyman and he's bigger than Godzilla and the monsters on TV, yes God is bigger than the boogeyman and he's watching out for you and me.

Someday ... some glorious day ... when the Lamb is the light of the City of God and there is no night ... when He who is worthy to open the scrolls finds every knee bowed and every tongue confessing ... when there is no more sickness ... when He wipes away every tear from my eyes and makes all things new ... on that day, these will feel like light and momentary troubles.

Today, we are leaning on the everlasting arms


Tuesday, August 5, 2014

Emma update

Emma is still not walking well.  It's been about a month.

She's got her sass and her energy back, and she wants to get back to running around, but something is stopping her.  It could be balance, it could be muscle weakness, or it could be that she's gotten used to being carried ... we really just don't know.

So it's time to find out.

Later this week, we're going to sedate her (again) and run a bunch of tests to see if we can get to the bottom of this issue.  She will have a lumbar puncture, an MRI of her spine, and an EMG.  The EMG is a procedure that involves lots of needles in her legs to measure muscle weakness due to a problem with her nerves ... I think ... 

I'm very thankful for general anesthesia.

I'm also thankful that she's not particularly unhappy (unless you put her down and walk away from her ... then she'll stand there and panic).  And I'm thankful that her other skills have not regressed.  She did great at speech therapy this afternoon, and colored with sidewalk chalk during OT.  She's doing wonderfully ... except with the walking.

She's a mystery, that one ...

An adorable, sweet, and oh-so-loved mystery

Wednesday, July 30, 2014

To give credit where credit is due

Sometimes I need to remember that God is good all the time.

It seems like such a simple thing, but sometimes I forget to be amazed by the fact that the One who flung the planets into space loves me fiercely ... sometimes I only remember that He's good when the answers to my prayers are 'yes.'

We're praying for clarity with Emma's current walking (or not) situation, and we're praying for her to get better.

And if she's all better today or tomorrow, I'll probably post something like, "Yay!  All better!  God is good!"

But even if these light and momentary troubles continue for a little while longer ...

He's not safe ... He's not Santa Claus ... He's not a genie granting wishes ... and He's not a supporting character in MY story, I'm hoping to play a small role in His.

Which makes it even more amazing that, as my Abba Father, He asks me to come and lay my cares at His feet.

There's so much I don't understand, but this I know: God is good

Wednesday, July 23, 2014

I am not God

God opposes the proud, but gives grace to the humble.  Humble yourselves, therefore, under God's might hand, that he may lift you up in due time.  Cast all your anxiety on him, because he cares for you. - I Peter 5:5-7

I've been struggling with anxiety in the past couple of days.  Emma is dealing with something unknown again.  I don't know why, but (despite the fact that, developmentally speaking, she's been walking for years) she's not walking.  It's been a couple of weeks.  She either can't or won't walk independently.

We've rounded up the 'ologists, doing all we can to check all systems.  We're trying decode what my little non-verbal 5-year-old is "telling" us by the fact that she just isn't walking.

Anxiety, right?

It's a difficult area for me to discern in myself.  A friend of mine said it well recently: on one hand, as parents, it's appropriate to feel care and concern for our children.  But, on the other hand, Jesus said, "Do not worry."  Where is the line between concern and worry?

Emma had a sedated scan yesterday (and we don't know the results yet).  Even though this was not a surgical procedure, she needed to be sedated to lie perfectly still.  Because of Emma's history of airway issues, doctors worry about mild sedation and usually just recommend going all the way to general anesthesia if she needs to be sedated.  This involves intubation and all the same monitoring that would be necessary if she were actually being cut open ... so it makes a simple scan much more of a big event.

And if you've ever had the "pleasure" of sitting with me while my daughter is sedated in another room, you know I struggle a bit.

I try to be strong.  I try to be patient.  I try to trust and lean into God's peace and tell myself that it'll be okay.  That works for, like, an hour.

But, without fail, I eventually have a moment where I sigh, I huff, I throw something, and I announce "Okay, that's it, I'm ready to have my daughter back now!"

Josh tells me to calm down and be patient, and I think loving thoughts about him when he does that ... or something ... it's a lovely moment for all involved ...

So what am I doing wrong?  Jesus said, "Do not worry!"  He commanded it.  Paul reiterates it in Philippians when he tells us to not be anxious about anything, and both Peter and the Psalmist say to "cast our cares on the Lord."  So what is my problem?!?

I thought about it a lot yesterday, and I think a piece of the puzzle is pride.

Care and concern involve doing what is within my power to do and trying to learn what is available for me to know so that I can care for my daughter the best I can, being the mother God would have me be.  But anxiety and worry ... they are different. There are two big reasons I worry:  Either I want to know what's going to happen in the future, or I want to change something beyond my power to change.

Anxiety hits me when I aspire to either be all knowing or all powerful or both.

Anxiety is the result of me thinking I should or can have those characteristics of God.

And when I don't recognize that I am not God ... that's pride ...

Peter says, "Humble yourselves," and then in the next sentence he says to "cast your anxiety on the Lord."

Said another way, "Becky, recognize that you're not God and recognize that He is."

Father, forgive me for when I worry because I try to take you off your throne.  You are God, and I am not.  Thank you for caring for me

Thursday, July 17, 2014

Oh, to return to Narnia!

This is a post without an end.

If you haven't read C.S. Lewis' The Lion, The Witch, and The Wardrobe, it will make no sense, so you could just stop now

(OR YOU COULD GO AND READ THE NARNIA BOOKS!  I'm just sayin ...)

But for the sake of this post not being a spoiler, I'll just tell what happened and hope the moral of the story is as obvious to you, dear reader, as it was to me.

:)

Charlie has never read the Narnia books.  Last week, I asked him if he'd like to read them, and he asked me why I liked those books so much.  I told him it was because they were written by someone who loved God and believed in Jesus and wrote his hero in the stories to be like Jesus.

So last night, after Emma was in bed, we settled in for me to read the book to him.

We read to the part where all four children are in Narnia.  Tumnus has been arrested by the White Witch's Secret Police, and the Beavers are telling the children that, though the situation seems grim, all will be put to right when they go and find Aslan.

Now, I haven't read a story out loud to Charlie in a long time.  He's big now, you know, and likes to read books on his own.  He's a boy who loves a good story of adventure, where after a long, hard battle, the good guys win.  So I am LOVING reading this to him.  He was clearly concerned for the childrens' safety when they walked into Narnia and found Tumnus' cave had been torn apart.  I felt his arm tense beside me as the children decide whether or not it was safe to follow the Animals away from the cave to go and talk to the Beavers.

But then I read the Beavers' description of Aslan.  The Great Lion, Aslan is the King.

Charlie interrupted me, "Oh!  I remember you telling me about him!  He's like God in the story, right?"

"Yup"

"Well, then, that means he's going to be INVINCIBLE!"

And with that, Charlie settled into his spot on the couch, happy and certain that victory could not be far off ...

Wednesday, July 16, 2014

The power of Story

I'm thankful for the power of Story.  I think there's a reason that the Bible is, primarily, a book of stories.  I think God is much much bigger than I will experience during my time on earth, but I also believe that He will reveal some of Himself to me through my story here.  And the bit of Him that I get to see through my mortal eyes may be not the same as the bits of Him that you get to see through your story here and now.

Which is why I think it's so important to share our lives, and to tell our stories.  If we're limping toward Jesus together, we miss out if we are silent.  And I can tell you my opinion about theological issues all I want, but what authority do I have to do that?  I can speak with some authority, however, about my Story.

Story is where (as my pastor would say), "God can swing a home run with a broken bat."

I would be the broken bat in that analogy :)

But that's okay.  He's a pretty awesome God who has given me some pretty great stories to tell.

Want to hear one?

Once upon a time, there was a beautiful Princess.  She had a very handsome Big Brother, and he was her Knight in shining armor.

One day, the Knight in shining armor spent almost the entire day of his summer vacation going to appointments for the Princess.

And yet, when Princess Mommy (a daughter of the King) found them snuggling together and interrupted for long enough to take a picture, the Knight looked up and smiled and said ...

  "I'm lucky"

I praise my God for the tender and compassionate heart he has placed in my children.  All good gifts are from heaven above, and I am thankful!

Sunday, July 13, 2014

To make much of ...

Frankly, you need to get over yourself.

Maybe life's pretty good for you right now ... you can show the world a person who enjoys blessings, but who is still totally obsessed with God.

Or maybe life is tough right now, and everything feels like a struggle ... you can show the world that your God is great and that knowing Him brings peace and joy, even when life is hard.  

To be brutally honest, it doesn't really matter what place you find yourself in right now.  Your part is to bring Him glory

 - Francis Chan, Crazy Love

Silence felt holy, there, for a little while.

It felt obedient to not share

Some aspects of my blogging were starting to feel self-indulgent and self-aggrandizing, so I stopped.

It felt like a good way to make sure I was squelching pride.

And I'm not saying that it was wrong to take a break.  And I'm not saying that I'm a vastly different person than I was when I was blogging before, or that my blog will be any different than it was before.

I'm just saying that I've pondered the idea of motivation quite a bit lately and decided maybe it's time to give myself permission to come back here :)

A podcast sermon I listened to today struck a chord with me with the following idea: "Sometimes pride can manifest itself in using your gifts to impress people instead of to serve.  And sometimes, pride can manifest itself in NOT using your gifts - if you are not using your gifts because of a fear of what people will think or say, that also can be a form of pride."

Oh

Ever had those moments, good ones or awful ones, where you just want to shout it from the rooftops?  "God is Good!  All the time!"

This is my rooftop :)

And ALL the time, God is good.