Tuesday, November 19, 2013

Big Stuff

There's a quote I heard one time that goes something like this: "If you want your children to tell you about the big stuff when they are big, take time to listen to the little stuff when they are little.  Because, to them, it's always been big stuff."

I've been trying SO hard to follow this advice lately, but lately ... well ... here's the thing ...


I love my son, I'm amazed by my son, I cherish my son ... but he's SO BOY!  And I cannot burp on command or say, "Pah-choo, pah-choo" at the right time when playing with toy guns or understand whether his story he's telling me about a sporting event is funny or not ... "Oh, dear, I hope that player didn't get hurt" has been the wrong response more than once ...

I'm a girl.  And I'm accepting that my role in my son's life is not always going to be easy.

But I can listen.  And I'm trying really really hard to listen and not squash his desire to tell me things.  I ALWAYS want him to tell me things.

So when the breakfast table conversation went down the following road, it was everything I had not to tell him to stop talking and get ready for school.

"Mom?  Did you know that they say that the tongue is one of the strongest muscles in your body?

"Mm Hm"

"And I think I know why they say that.  Cuz, look, I can stand up and lift up the edge of this table with my arms, right?"

Proceeds to demonstrate ... but only about an inch ... nothing spilled ... so I didn't reprimand him ... I was so close, though ...

"But then," Charlie says, "I try to lift the table with my tongue and I can't"

I look over and he is honestly trying to lift the kitchen table with his tongue.  Standing in a squatting position next to the table with his tongue stuck out trying to lift the edge of the table up with his tongue.

Again, it was a momentary thing, not overly silly, not mess-making ... and again, I was this close to telling him to stop being silly and get dressed ... but he stopped and sat down and kept talking ... I could tell he had more to say and I was trying so hard to be a good listener.

"So you know what I think they mean when they say the tongue is the strongest muscle?"

At this point I was, again, this close to telling him why the tongue is considered such a strong muscle ... about the anatomy and physiology of the tongue and it's immense job in our bodies ... my inner science teacher was just begging to be unleashed.  But he had asked if I knew what HE thought.  And I didn't.  So I said, "What, buddy?"

"I think they mean, like ... and this is just an example, Mom, I don't mean this for real ... but I think they mean if I were to say to you that I think your glasses are ugly.  My tongue would be saying that.  And it would hurt your feelings.  I think they mean the tongue is so strong it can hurt feelings more than arms can, even if arms can lift tables."

Thank you, Holy Spirit, for reaching down and taming my tongue so I could hear my boy say that.  I am such a slow learner, but I hope I will eventually figure out that if I am quicker to listen and slower to speak, I will be blessed.

Monday, November 18, 2013

Silver lining

I overheard Charlie and one of his school buddies chatting the other day.  Charlie's friend was talking about his little sister, telling Charlie that she was "annoying."

I was so curious ... so later I asked Charlie if he ever thought his little sister was annoying.


"Oh, I'm glad to hear that, buddy!  Why not?"

(tone of voice: the "duh" was implied) "She has CdLS!  She doesn't talk!"

I literally laughed out loud. :)  Fair enough, big brother, fair enough.

Friday, November 15, 2013

Emma sized party

There are two types of people in the world; those who want to be celebrated on their birthday and will tell you exactly how you should plan said celebration, those who want to be celebrated on their birthday but will tell you they don't want anything special/don't want to be a burden/don't care, those who regret the fact that they're a year older and don't believe that's a reason to celebrate, those who don't like to be the center of attention and therefore would honestly like it to be just another day, and those who have no idea it's their birthday.... Like I said, there's two types of people in the world.....

The Princess Diva is in the second category, she doesn't have any idea it's her birthday and would prefer it be just another 'stick to the routine' day. Cause if you don't stick to the routine, you get this!
All 23 lbs of Angry Bear!

So, in the interest of avoiding that......Becky and I debated; how/what do we do for her birthday that's really about her? What would she enjoy? Big family get together at home.....nope. She's not big on people being in her space. Big family get together at a different place.....nope. She's not big on new places. Takes her a long while to warm up. Some fun activity with friends.....nope. She's not big on new things/places. Again the warming up period. Maybe go out to a nice dinner! Oh wait.....she threw a whole chicken breast at someone while we were out not too long ago. Nope.  

Charlie and I decided to make her cupcakes. If she throws one, we have more. (see a theme?)

We picked a family friendly (read: we could pick our own table and place Emma strategically in front of a wall. She only throws backwards!) restaurant, and then we came home and let Emma go at the cupcakes.

You want me to do what with this?

There are some distinct advantages to having a child who grows up very slowly. This is at least the third year we've done the "make a mess of yourself and straight to the bath" part of the party.

I think I remember this!

I must study and yell at it!

Charlie! You must understand my excitement! They gave me a second cupcake!

One moment! It seems I now have a third cupcake!

Now I must wear it!

So, that was Emma's 5th birthday. A smashing success!

Ok, I just thought this pic was cute. - Josh

Thursday, November 14, 2013

Sometimes love is NOT throwing a party

So the Bear turned 5.

And we did NOT throw her a party.

Here's the thing about my girl.  She's a child of routine.  She doesn't necessarily understand when something "out of the ordinary" happens, so routines help settle her.  And lots of people in her house is NOT a part of her routine.

Yes, she eventually adjusts when we have people over.  There is some yelling involved (on her part, not ours), but we usually know that we can just sit and wait and after a bit she'll adjust to the idea of it being fun to have people at her house.

But a party in her honor doesn't seem like something she should have to "deal with" or "adjust to" or "get used to".  It doesn't seem loving to a Bear to put her through something that she won't enjoy simply because she's graced us with her presence for a full five years.

So we didn't.

Instead, I let her loose in a craft store :)

She is a child who loves textures and color and patterns, so I took her to a craft store and just let her have her way with things

At first I thought maybe we'd be bringing home peacock feathers, but she eventually lost interest

She zeroed in on rubber-band bracelets.

Charlie and his classmates have been exchanging these as friendship bracelets, and she's been coveting his, so it didn't surprise me that that's where she landed.

Charlie was thrilled with her choice and immediately set about to making her a bracelet.  If she'd hold still for long enough, I'd show you a picture of it, but she dances around with it and it's become her security item for the week, so you'll have to take my word for it :)

She had a delightful birthday.

It wasn't what I thought a five-year-old birthday would look like ... but I think you know me well enough by now to know I'm over that, right? :)

Thank you, Heavenly Father, for the gift of Emma

Wednesday, November 13, 2013

See? Happy.

Oh, how I love this sweet girl!

Thanks for all the birthday wishes for the Bear.  It was a pretty great day :)

Tuesday, November 12, 2013

Dear 29-year-old self ... five years later

Dear 29-year-old self,

Today is Emma's 5th birthday!  I can hardly believe she's turning 5!

I wanted to write you a letter ... actually, I wish I could reach back through time and give you a hug.  Your world has just been rocked by a diagnosis.  You hate the letters CdLS right now, and the future looks scary and uncertain.

But somehow, amazingly, five years have passed, and truly, it really is okay.  I mean, it's not your current 29-year-old definition of okay, but it really is going to be just fine.

You are happy!  Five years later, Becky, you are going to sit down and realized that your life is blessed and you and your family are happy!

Yes, she doesn't talk (yet?).  But you look in her eyes and she tells you she loves you.  Without words.  You just know.  She smiles and dances a little when you pick her up from preschool.  She has a knowing twinkle in her eye that tells you she understands, and when she wants something, she CERTAINLY gets her point across.

And you are happy.

True, she still wears size 2T clothing.  But she's ADORABLE.  You'll look back at yourself, bragging about how big Charlie is (as if you had something to do with that), and laugh.  You'll realize that there are things beyond your control, and that the height of your children is one of them.  She's your tiny dancer, your little princess.  You often have to defend her size to doctors and rude strangers alike, but you're okay with it.  You are proud of her.

And you are happy.

She does walk, but she doesn't really follow directions, so she's a bit of a stinker.  And you think it's hysterical!  She has this strut, marching into a room at church like she owns the place or marching away from you when she doesn't get her way ... it makes you laugh out loud.  She makes other people who love her laugh, too.

And you are happy

And of course, medically, she's had quite a road.  She's had over a dozen surgeries at this point, in addition to illnesses and hospital stays that have been terrifying.  But you know what, self?  She's so strong.  And when you really stop to think about it, so are you.  Christ is going to give you more strength than you can even imagine right now.  Right now, Emma is healthy.  Your family has fought hard for it, but she is healthy.

And happy

And if we're being honest with each other, self, I know you're worried about Josh.  You know the statistics that the divorce rate in situations like ours is staggering.  I'll be real.  Five years later, you will COMPLETELY understand why.  It's hard work.  Really really hard.  But you have no way of knowing how much deeper in love with your husband you will be five years from now.  You don't know this yet, but he's one of the good ones in ways you can't even comprehend.

And you are happy.

Oh, and Charlie.  He's so great.  I know you worried about him still getting to be a "normal" kid.  His life is not normal.  It's so much richer, deeper, truer, and more blessed than your current definition of "normal."  Yes, he cries when Emma is in the hospital.  Yes, he bears the burden of explaining CdLS to his friends.  But he rises to the challenge and amazes you.  Yes, there are times when he misses out, and times when you miss out on him, but no member of your little family of four is EVER taken for granted.  You will see God work in the life of your son in ways you cannot anticipate.

And he's happy

Emma knows she's loved.  Every day.  I don't think she knows it's her birthday, today ... but I am CERTAIN that she knows she's loved.

Which means that today, she'll have a Happy Birthday. :)