Friday, July 20, 2012

And then there's this ...

Charlie was at VBS this week with a friend at a church that we don't attend on Sundays, but it was where he went to preschool.  He had a wonderful time!

On the last night, parents were encouraged to come a half hour before pick-up time to see a performance of all of the songs the kids had sung during the week.  The kids also recited a couple of their Bible verses and they told some Bible stories they had learned.

Emma was in a really good mood, walking around all over the place and, um, greeting new friends. 

She's lucky she's cute :)

So I saw this one man come in and sit down off to the side.  He was wearing khakis and a white polo shirt with a collar and, while he was clearly there to watch his kids, he seemed to not know anyone else there.

Emma chose him.  I mean, really, she decided that she was going to make friends with this man.  It was a very random choice, if you know my daughter at all.  He had nothing interesting on his shirt, no sunglasses or watch, not even a beard to play with.  There was nothing about this man that would make me think that Emma would be interested in him, but she would not be steered away. 

She walked up and reached up her arms in a VERY clear request to be picked up.

He gave me the raised eyebrow "is it okay if I pick her up?"  look, and I gave him the "she's clearly chosen you and there's not much I can do about it so if you're okay with this, I am too" giggle and hand gesture

They sat and made friends, and then, of course, he asked me how old she was

"Three and a half"

"Oh!  Oh, wow!  Okay! ... She's so cute!  And busy!"

(the usual)

Something made me sort of sense that he was receptive, so I told him that I had been told when she was born that she might never walk or talk.  I told him that I didn't mind the busy-ness at all because I cherished every step and that she was my miracle girl.

As if to demonstrate her skill, Emma squirmed down and walked over to see if the guys running the sound booth would like any of her assistance.  I thought at that point that my conversation with the man in the white shirt would be done, but Emma went back to him after about 2 minutes.

He picked her up again and asked "what she has" ... I went with the "CorneliadeLangeSyndrome.It'salotlikeDownSyndromebutwithmoremedicalstuff" answer ... I think I'm getting better at gauging how much of an explanation people are up for.

I asked him about his kids at VBS and he pointed them out to me.  His son was a year younger than Charlie, and he also had an older daughter in the program.  He sighed and told me

"This is just so amazingly good for them.  They've never been to anything like this.  They've never heard these stories before.  We live just down the street and my neighbor invited us, and I'm so very glad we came.  I'm realizing that we, as parents, have neglected this part of their education ... it's time ... this is just so good ..."


Wow.  My little 20 pound ice breaker really gets the conversation rolling, doesn't she?  Amazing for a child who doesn't talk ...

Emma started dancing on his lap, and then saw Charlie's preschool teacher from last year, so she walked over to her.  At that point, Emma was in VERY good hands, so I responded to the man that I knew that this church was a wonderful place.  He was particularly interested when I told him that Emma had just gone to say hello to Charlie's preschool teacher and that we had LOVED the preschool program at this church. 

And then Emma tried to climb a ladder

So that conversation was over

Now, I don't want to over-spiritualize this, I really don't

And I don't know what, if anything, will come from the conversation I had with the man in the white shirt.  I'm sure I will never see him again, but have you ever walked away from a conversation feeling like it was a pre-ordained encounter?  I don't know if I said something he needed to hear or not, or if a smile and a cute little girl really have the power to return a family to church or soothe a heart that was aching for some reason ...

But, if the Holy Spirit had tapped on my shoulder and whispered, "Go talk to him," I might have rationalized it away

And if the Holy Spirit had tapped on Charlie's shoulder and said that same, he might have struggled with whether or not it was okay to talk to strangers.

Emma has no such filter

She is such a blessing

Wednesday, July 18, 2012

Flowers and Butterflies

It poured this morning.  Like, the sky opened up and it POURED.

And then it stopped and we went to the zoo with some friends.  Charlie and his friend had a good time being boys, and I enjoyed the company of some (albeit interrupted) adult conversation.

It was a mostly good time.

Emma had spurts of happiness, but she also lost it a couple of times.

I'm not really sure why.  It could be because the Tropics Trail was hot-ish and muggy, or it could be because of an error in her overnight feeding which left her about 200 calories short for the day, or it could be that she was just not in the mood for the stroller, or that she was NOT done looking at the fish and couldn't communicate that ... I really have no clue.

I fed her an extra dose of food and we just sort of kept moving, and I very much appreciate the grace of my friend in understanding that sometimes there's nothing I can do except wait for the feeding pump to fill my daughter's little belly.

But Emma did really enjoy the Butterfly Garden.

I handed Charlie my phone and let him take pictures and Emma and I walked around practicing "gentle touch" with the brightly colored flowers. Photo credits for this post: Charlie




My daughter's life is an incredible blessing.

And my life is very much defined by that blessing.

CdLS is not a blessing.

There are blessings wrapped up in CdLS, but when the genetic counselor made that phone call on that day in January three years ago, she was not calling with good news.

It's hard. It's hard because I want you all to see how wonderful my daughter is and I want to show you how blessed Charlie and we are to have her and I want you to love her because I love her and I want people to not pity me because pity sucks.

(please read that sentence again? i cried a little when i typed it ...)




So I think I'm afraid to show some "behind the scenes" moments.

The moments when Emma wants to tell us something she can't communicate so she pitches a fit.

Or the moments in a restaurant when she gets overwhelmed and completely loses it

Or the moments when I'm completely spent and don't relate to my husband well

Those moments suck

Those moments are why no one says, "YAY! You got a special one! You are SO lucky, I TOTALLY WANTED one of those!"





The butterflies were beautiful, but sometimes the pictures got a little fuzzy

The girl is a wonderful blessing, and I promise you, the good times really do far outweigh the bad.

Sometime there are just moments that are a little fuzzy.

Tuesday, July 17, 2012

How's this for a silver lining?

Some of you know that I had a concussion last week. 

(the short version of that story is that, on my birthday last weekend, I fell and hit my head ... the slightly longer version of that story is that I was actually in the process of passing out before my head hit the tile floor of the bathroom I was in ... there was no alcohol involved ... no, I don't know why I passed out ... someday when I'm bored I'll look into that)

The reason that some of you know this is because I spent last week feeling a bit drunk/hungover, and I had some short term memory loss.  Short term like, I'd start a sentence and truly have NO idea where I was going with the thought before I ended the sentence.  I couldn't follow a recipe because I couldn't remember what I'd added.  Reason number 387 why I love my crockpot: there are so many meals that can just be dumped into a crockpot with a few easy-to-recognize ingredients and a passable dinner begins to take shape.

So anyway, I couldn't drive for a week.

With the help of some DEAR friends (for whom I will be forever grateful), we actually made it to most of Emma's stuff last week.  However, Emma's stuff last week included school and therapies.  Therapies happen in waiting rooms with fun toys and school is just a drop-off process, so my cognitive abilities (or lack thereof) were not an issue with last week's appointments.

The DAY I felt well enough to drive (read: the day my husband agreed that I would be allowed to drive again), Emma's new medical adventures popped up.  Let the doctors appointments and pharmacy battles resume!  I am once again able to do it!

Isn't that cool?  Seriously!  I'm kind of excited about how well that worked out!

Now, I think the idea that "God never gives us more than we can handle" is theological hogwash.  Seriously, find it for me in the Bible!  It's not there!  If anything, God ON PURPOSE gives us more than we can handle so that we handle it WITH Him.

(sorry, I accidentally landed on a soapbox there)

But I do think God is a good Daddy who takes care of His kids.

So I'm gonna thank Him for that "coincidence" ... Thanks, Daddy.  Your helping hand did not go unnoticed!

Monday, July 16, 2012

Medicine

Once again, Emma is on antibiotics.

It's a skin thing this time, mostly around her Gtube site, and the details are no fun, so let's just leave it at that.

The pediatrician walked into the office today and said, "Oh, MY!"  I'm glad to put a little excitement in her day.

I'm praying that the medicine we are using will take care of it ... I'm a little done with the whole "drug resistant bugs" train of thought!

But on the bright side, other than sleep being interrupted, Emma is not acting super sick!

And I keep forgetting to share this:
There are no words to describe the joy in my heart last weekend when my daughter and I were reading together. Emma got down off the couch, walked over to the bookshelf, picked up another book, and brought it to me to read.  Thank you, God, for that moment!

Give ear to my words, O Lord, consider my sighing.
Listen to my cry for help, my King and my God, for to you I pray.
In the morning, O Lord, you hear my voice,
In the morning, I lay my requests before you
and wait in expectation

But let all who take refuge in you be glad; let them ever sing for joy.
Spread your protection over them, that those who love your name may rejoice in you.
For surely, O Lord, you bless me
Psalm 5

Tuesday, July 10, 2012

How's your faith?

I want to share something that a wise person shared with me awhile back.  It may sound out of context, but I haven't written about my faith journey in bit, so I just wanted to share something that encouraged me.

The context of the conversation was whether or not God gave Emma CdLS, but it became a bigger conversation, the details of which are not important.

I freely admit that I am not smart enough to understand why a good God allows bad things to happen.

I've read a lot of theology about it.  I've read books by people smarter than I am and heard sermons preached by people who have been walking with Jesus longer than I've been alive.  I can discuss the Free Will argument and predestination and debate the character and the sovereignty of God with you until we are both blue in the face.

Let's not, though, okay? :)  That's not my point.

What I wanted to share was that I have decided, for now, that it is okay that I do not know the answers to some of those questions.

I do not know how things happen.  I do not know if God gave Emma CdLS or if God allowed Emma to have CdLS or if the world is just broken so Emma got CdLS or ... what

But Job never got an explanation either. 

God doesn't often explain. 
God redeems.

Is my faith going to be increased by the answer to my theological question?  Probably not.

What increases my faith is to see GRACE in action. 

I don't need to know the ins and outs of how a chair was made.  If I sit on it, I trust it to hold me.  And if I've sat on it 100 times, I trust even more that it will hold me again.

I trust Him.

Since we have been justified by faith we have peace with God through our Lord Jesus Christ.  In him we have also obtained access, by faith, into this grace in which we stand.  We rejoice in the hope of the Glory of God, but more than that, we rejoice in our sufferings knowing that suffering produces endurance and endurance produces character and character produces hope and hope does not put us to shame because God's love has been poured into our hearts through the Holy Spirit which has been given to us. (Paul wrote that to the Romans ... I think he was in prison at the time ...)

I don't know whether God causes suffering or allows suffering ... I just know that He REDEEMS suffering.  Whatever bad has happened in my life ... He's going to take it and mix in some of his Amazing Grace and by the time He's done working it for good, I'm going to marvel at His redemptive work so much, that I might even wonder if that's what He had planned from the beginning.

Thursday, July 5, 2012

Learning


Something has happened in the last week.  Something amazing that I can't quite put into words.


I don't want to overstate it, but a light bulb seems to have gone off in my daughter's head.

It actually started with the ear drops.  Ear drops have always been ... um .. challenging.  No, they've always been a RODEO.  We wrestle her down and she fights and kicks and screams until it's over.  But last week, at bedtime, she grabbed the bottle.  I told her that they were ear drops and they help her ears feel better.  She pointed to her ears.  I told her it was ear drop time. 

She didn't cry.

There have been several instance like this, of just suddenly realizing that my daughter understands what I am saying to her.

Books have suddenly become much more interesting.  She points to pictures more than before.  It's almost as if she's asking for the names of the animals.

And her play has become more social.  We were playing with friends last weekend and Emma grabbed a shoe and tried to put it on my foot!  Do you know how exciting that is, that Emma knows that shoes go on feet?!??!?!

And yesterday we were playing with strings of beads.  Instead of just waving it around and putting it in her mouth, she put one necklace on herself and then she handed one to me and tried to put it over my head.  More than once.

This is huge!

And Charlie is LOVING IT

video
This game of "Ball to Charlie, Ball to Emma" went back and forth for a good 10 minutes.  We were SO excited.

I'm so proud of my girl.  Sometimes it's just really really hard, but on days when she gets it, I am filled with great joy.

Monday, July 2, 2012

Ear update

(someday I'll do a search and count how many of my blog posts have had that title)

Emma does NOT have to have surgery!

As horrible as the Instruments of Torture were last week, and as much fun as we are having with ear drops, I am relieved that her ears have now submitted to good behavior.

I would say Emma is back up to 90% health.  The details of that statement are boring and poo-related, so I'll leave it at that. 

Praise God for healthy Emma ears!