Friday, January 25, 2013

because I think she reads my blog

Sometimes I don't share Emma victories right away.  She fakes us out sometimes.  Sometimes, she'll do a really cool skill ... once ... and then, if she doesn't do it again for a long time, I feel silly having reported that she's doing it "for real!"

But it's been at least a week, so I think I'm safe to announce, whether she hears me or not:

Emma is eating!

Like, the food is actually factually going into her mouth, down her throat and into her tummy.

More than once

Reliably

So that the bowl of baby food gets empty

:)

And she likes it

AND IS MOTIVATED TO USE SIGNS TO ASK FOR MORE!

I'm so excited.

the fine print, of course, is that we still have a long way to go in terms of volume.  Emma is supposed to get a little under 30 oz of food and water in 24 hours.  In a given 24 hour period, the most we've seen her eat by mouth is 4 oz.  So she is still very dependent on the tube

Regardless of how much we still need the tube, I'm so proud of her :)  We have worked so hard to get her to eat, I'm so glad we're finally starting to see results!


Thursday, January 24, 2013

Mine

 Tiny Toes


Sweet button nose



and those oh, so beautiful eyes



how lucky am I

that she is mine?


Tuesday, January 15, 2013

Gifts - to be used: Part 2

When people talk about giftedness, they are often talking about special skills.

I often think of my giftedness in terms of what I bring to the table.

For example, I can teach.
I'm a fairly good teacher.

I don't have a fear of public speaking and, for the most part, if I were placed in a room with 40 children, we'd all make it out alive and having enjoyed our time together.

But I'm also Emma's mom.

So it took me awhile to get back around to the idea that I could use my gifts without burdening someone else.

Let's pretend a Sunday School class needed teaching.  Or a musical needed directing. :)  I could do that.  I like doing that.

But someone else would have to watch Emma.

So is it best for me to just not volunteer to help?  Is it a net-gain of zero if my helping requires someone else to help me?

I think the answer is no.

I've been thinking a lot lately about the idea that 'it takes a village' ... it takes a community to build community.  It takes lots of bodies to build a Body.  So when I feel like my God-given skills can contribute, should I hesitate because ... well ... because of Emma?

I've been feeling braver lately.

And what encourages me to let others help me chase the Bear sometimes is this: That girl is a BLESSING.

Because God is using Emma
 to teach
 some middle schoolers
and children
and adults

He's teaching them, through Emma, more about what it means to love.  That is one of her GIFTS.

Now you are the body of Christ, and each one of you is a part of it.

I have places where I can go where I can stand and visit with adults while other kids engage with Emma.  Emma has several children her age who consider her a friend, whether Emma knows it or not.  Our family does life with other families who are either willing to walk with me while I chase a girl, or, more often, another one of their children considers it an honor to get to run around with Emma and keep her from putting her finger in an outlet.

The body is a unit, though it is made up of many parts; and though all its parts are many, they form one body.

It's humbling.  And wonderful.

And it's how we grow.  Think how much those teenagers would miss out on if I assumed that I needed to be the one to watch Emma all.  the.  time.  Think how much those children would miss out on if I just assumed that Emma's drooling would scare them off.  Very often, I think how much I've grown from knowing Emma, so why on earth would I deprive others of that growth?

 Now the body is not made up of one part, but of many.  If the foot should say, "Because I am not a hand, I do not belong to the body" ... if the whole body were an eye, where would the sense of hearing be? But in fact God has arranged the part in the body, every one of them, just as he wanted them to be.


I'm making the choice to stay in community, regardless of how much different that looks these days.  Regardless of how much extra "Emma stuff" is involved ... because maybe something I see as a burden on someone else might actually end up being a blessing

The eye cannot say to the hand, "I don't need you!" and the hand cannot say to the feet, "I don't need you!" On the contrary, those parts of the body that seem to be weaker are indispensable ... if one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.

1 Corinthians 12 paints a beautiful picture, doesn't it? :)

So I ask again; Should I hesitate to use my gifts?  Is it a net-gain of zero if my serving requires someone else to serve me?

I think if we're brave enough to answer NO to those questions, we see how truly BEAUTIFUL community can really be.

Monday, January 14, 2013

To be used - Part 1

I want to share a post with you that I didn't want to share when I wrote it.  This was written this past fall when I was just getting used to what it meant to parent, in public, a newly-walking Free Range Emma

I'm getting lonely.

Now that Emma can walk, she doesn't want to do anything other than walk.  Don't get me wrong, I'm proud of her.

But her behaviors are becoming more apparent now.  She won't (can't?) come when called.  She doesn't follow directions.  She's doesn't just naturally join in with other kids doing somewhat appropriate things.  She may, instead, choose to lick a window.

So in public or large group social situations, I need to be very very on top of where she is and what she's doing.  Which means I get NO quality social interaction anytime Emma is with me.

I cannot sit on a bench with other moms while we all watch our kids play.

And I won't be able to any time soon.

Emma is not going to learn to be normal in her social interactions.  She'll gain skills, but she will never be a kid who I can "trust" outside of the very hands-on care of a trusted adult.

And she's sick again.

The drops didn't do the trick.  The ear infection didn't go away and it's spread to her sinuses.  So I gave her the first dose of an 'oral' antibiotic today, which is going to mess with her gut.

Which is going to make her feel crummy

Which is going to interrupt her learning

Which is going to keep her in the "window licker" category for a little longer

I want to press on to take hold of that for which Christ took hold of me.  I want to run the race set before me in such a way that I will hear "Well done, good and faithful servant."

But I feel like all I'm doing is chasing a mischievous little monkey and fighting infections.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Since I wrote that post, I've realized something really important about what it means to be in community.  I feel at liberty to share it now because I don't feel that way anymore.

You know how sometimes, God puts people in our path to stretch us and help us grow?

Emma is stretching all of us.

And just like my skin adjusted to the extra Reece's peanut butter cups I've eaten this holiday season, :)

my community will stretch to new dimensions to include me

wow

How humbling is that?

Humbling
and wonderful

I have more I want to say about this idea, but I think the thoughts deserve two separate posts ... so stay tuned :)
 

Saturday, January 12, 2013

Ear update

I love that Emma's specialists love her :)

We got a call from Emma's fabulous ENT.  He asked, "How's the Bear today?" 
That makes me happy


He had the results from Emma's CT scan.  He started by confirming that the cholesteaotoma (which will, from here on out, be referred to as the Not a Tumor ... which is funnier if you say it like Arnold in Kindergarten Cop) had done some damage.  He reassured me that it hadn't gone into her brain or anything, though.

WHAT?!?!?!!?  I didn't even know to worry about that!  

That was my inside voice.  My outside voice kept it's cool and agreed that was good news.

sigh

So the Not a Tumor has done some damage to Emma's mastoid bone (bone way down deep in her ear canal) on her right side.  Our fabulous ENT doc said that this scan will inform surgery, helping him do his best to remove all of the disease from her ear canal.  He said, however, that he will probably not reconstruct that bone.  He'll reconstruct the ear drum from cartilage around Emma's ear, which should keep the body from rejecting the fix.  But anything that he would do to reconstruct the bone would put Emma at further risk for more Not Tumors.

He also noted that the mastoid bone in Emma's left ear is also full of fluid.  I asked him if he planned to do anything about that.  He said that as long as Emma has an open, functioning ear tube on that side, there will be no pain or pressure build up in that ear, so it will just be a hearing issue.  And, again, if he were to do anything, it would put her at an increased risk for more Not Tumors.

"And, since she needs hearing aids anyway, let's not put her health at risk for the hopes of better hearing.  We'll just need to increase her amplification."

So, after all is said and done, her hearing will be worse than it was before.

(as a side note, could someone explain to my daughter that this means actually wearing the hearing aids more often will be helpful ... you know ... as opposed to flinging them across the room?  Oh, well.  That's another conversation for another day)

We're back on ear drops to keep the Not a Tumor from spreading, and we'll have surgery in February to remove it and rebuild her ear drum.

It's always something with this one, isn't it?

At least she's cute :)



Wednesday, January 9, 2013

Blessed

My son turned 6 today

My smart, goofy, sweet, compassionate, sensitive, wonderful boy is SIX!

How is that possible?

I am so very thankful for him and everything he is.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Meanwhile, Emma spent the morning under general anesthesia.

No surgery, just a test that they needed to sedate her for.

We won't know the results for a few days, but she did GREAT with the procedure!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Now, I gotta say, I know that all parents struggle with balancing the diverse needs of their kiddos ...

but today could have royally SUCKED.

One kiddo in the operating room on the other kiddo's birthday ... could have been tough.

But I am SO SO thankful that Charlie is having an awesome birthday!  My brother took him sledding with his little cousin this morning - and then, Charlie tells me, they even got to have HOT CHOCOLATE!

We are SO blessed that our family lives close.  It truly takes a village, and we have a pretty amazing village.  Thank you, God, for the people you have surrounded us with!

And thank God for Charlie.  He amazes me daily and I am so excited to see what God has in store for this wonderful child!

Wednesday, January 2, 2013

Life

I love camera phones.

I really really do.  With all that can be said negatively about these little rectangular devices we all seem glued to these days, I will say that there is immense blessing in having a quickly available camera.

Moments get captured.

And then, when Mommy has a morning ("the toilet is clogged and Emma is supposed to be at school in two minutes how can you possibly be out of toilet paper and don't touch anything I just cleaned those counter tops!!!!!"), I can scroll through and remember that life really does look very sweet very often.


"Come here, Emma, want to play on my bed with me?"

"See, Sophie?  Mary and Joseph walked all this way to Bethlehem where Jesus was born.  Can you imagine walking all that way?"

The view out our window over-looking Lake Superior during our Watczak visit.  Duluth visits are always wonderful :)

"Mono?  What mono?"
 Charlie had been acting exhausted leading up to our Christmas musical at church, and we just thought it was excitement surrounding the season.  When he started crying at school, though, we decided to get him checked out.  Turns out, he had mono!  He is feeling much much better now after some rest. 

His consolation prize for missing out on his Snowman Party the last day before winter break?  A Mohawk :)

 I think he looks great!

"Big Brother says I look super cute in these reindeer ears"

"What's your problem, Mom?  I got this"
And Mom only had a small heart attack when upon catching Emma halfway DOWN the stairs.  Up until now, the Bear has been insistent that, while she can climb up the stairs just fine, she needs to be carried down them.  So we've just sort of assumed that the stairs are safe because she won't even try.  One day, while Mommy was downstairs doing laundry, Emma got brave.  I found her halfway down. 

Oh, well. I'll run for Mom of the Year next year :)

So there you have it. Captured moments from a pretty sweet life