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!


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!