Friday, June 29, 2012

Chicago was...


(Hee hee.. I thought I was SO clever and witty for coming up with that all on my own. 
Until I heard a 5 year old say the exact same thing... Turns out I'm just immature. )

Okay, so no offense to everyone who told me how much they love Chicago and all the great places there are to visit.. And no offense to anyone who must be completely out of their mind to want to live there... but seriously??? How do you do it?

The insane traffic, the clusters of people EVERYWHERE, the noise, the traffic, the parking, the crazy drivers, the TRAFFIC!!!


But anyways.. We did get to see the Sears Tower

So even though it ended up costing us an arm and leg to park and get up there.. and it took us about 30 minutes to drive around the block.. and we accidentally pulled into a valet parking garage with our beat up, dusty old Impala, only to be surrounded by shiny new BMWs, Porsche's, and Mercedes.. and when we couldn't find our ticket that said which car was ours the guy took one look at us and said "Don't worry.. I know which one is yours"... and we didn't have time to get deep dish pizza... and we have a few more gray hairs from driving downtown Chicago... it was totally worth it kinda cool.

Yes, Chicago was Illinoing. But thankfully our CdLS Conference was a better experience. :)

Here are a few things I came home with.

1. Amazing new friends. Everyone at the Conference was SO amazingly warm and welcoming, making it so easy to sit down and get to know almost anybody and any given time. Even if our kids were entirely different ages, on entirely different levels, there was a deep connection that flowed between people who have gone through it and "get it."

2. A deeper appreciation for ALL differences. Since my world was rocked upside down a year ago by a diagnosis of CdLS in my sweet Ella girl, my eyes and ears and heart have been opened to so many amazing opportunities to witness the differences in this world and the beauty in them. So many times I think the world looks at people who are different and feels sorry for them, thanks their lucky stars that they're not "like that" and moves on. But if we really stop for a minute, we'll see that there is an indescribable beauty, not in spite of, but because of our differences.

3. A southern accent. Turns out I must have hung out with a bunch of Southerners last week.. Can't wait to see y'all again!

4. An extra 10 pounds. All weekend we ate. And sat. Ate and sat. Then ate and sat some more. And at every meal there were at least 3 different entrees to try. Wait.. I just realized maybe there were 3 entrees to pick from.. like as a choice. Not like-you need to eat all 3.. Hmm... Interesting.

5. Quarters. Yes, I packed quarters for parking in downtown Chicago. HA! And yes, I brought them all back home with me. Bringing my first-born son in exchange for parking would have been more appropriate.

6. A spoiled rotten baby. Okay, maybe I had this before I left, but it is gotten WORSE! She was pretty much held, cuddled, loved on for 4 days STRAIGHT. And does not understand why in the world I would want to set her down now that we're home again. She is apparently clueless to the heaps of laundry, sticky floors, overgrown lawn, and 2 boys needing attention as well.

7. A spoiled rotten baby who HATES the car. On the way to Chicago, Illinoing we made it in about 9 hours. On the way home? THIRTEEN!!! She was happy whenever we would get out to let her stretch. And then we would head back to the car. Merely opening the car door would cause her to scream. (I think that's good cognitive skills though, right???) *sigh... I spent the last 5 hours in the back seat with her, doing some serious entertaining and suggesting to every car we passed that I was, in fact, the special needs kid in the back...

So I know I have waited a few days all week to post about our trip.. Partly because I've been trying to spend some much needed time with my boys. Partly because I'm trying to get over the fact that those dishes on the counter----I have to wash them. And these kids that want to eat every few hours----I have to cook for them. And I am completely appalled that when I leave my towels on the floor someone doesn't come pick them up while I'm gone and wash them... Outrageous, I know. I haven't posted partly because I completely overscheduled myself for July and am totally stressed and it hasn't even started... And partly because I also brought home a little disappointment from Conference.

Disappointment that I didn't get to visit with the specialists I wanted to, my "one-on-one" meet the expert appointments were pretty pointless, and I had to miss the ONE session I think I would have really benefitted from in order to go to those waste-of-my-time expert sessions.

I hate to make it sound negative because we really did have a good time at Conference. I wanted to write a beautiful post about Conference like my friend Becky did. I kept hearing people saying how much they had learned and how they got so many answers.. and I wish I could say the same. Honestly.. the only things I "learned" was that Ella needs to crawl before she walks, a suggestion on a different kind of sippy cup to try, and that if the Geneticist had to make a guess he would guess she has the NIPBL gene mutation. Well, since 60% of CdLS-ers have that gene mutation, I guess by the laws of ratios I would make that guess too!!!

I guess what I really wanted out of Conference was for a little better idea of a prognosis. I know that no one can say for sure, "Yes, your child will start talking in a few months," or "We know for certain she will walk by age 2." I know that. I just wish I could look at the vast array of kids and pinpoint a little better what she might be like. You seriously can't comprehend the huge spectrum of kids until you see it in person. I wanted someone to come up to me and say "This is exactly what my daughter looked/acted like at that age and look at her now.." And no one did. And right now I just have no idea what to expect and that's kindof scary.

But despite that.. what I do know is that as hard as the past year and a half has been, as many trials as we have been put through, and as many emotional and physical battles we have fought.. we have been beyond blessed to have Ella and CdLS brought into our lives.

Monday, June 18, 2012

like a thief in the night... happy anniversary honey!

Ahhhh... June 18th. Our six seven year anniversary. (kidding dear--I remembered!) 

Today is a tribute to my wonderful, loving husband because he deserves it. Really.. he totally deserves this.

The other night we went on a romantic date. To where else? Menards. On the way he asked me if I had any ideas for a Father's Day or Anniversary blog. I said "No. Why? What would you write about?"

Without hesitating he said, "I would call it the Seven Year Itch... except with a "B"


Without further ado...

Reasons why I love my husband

He's a GREAT dad..

He always knows the best way to comfort our children

and they really love playing with him.

He helps out around the house

And he has the best ears

EVER for our kids to play with.

He's a hopeless romantic

and still wooing me every chance he gets..
He supports all my crazy ideas.


And he brings such energy to our home.


He's a hard worker,

but knows when he needs to take time

to PLAY!

He's good at sports

and a great fisherman...

But the biggest thing I love about my husband is the serious heart-to-heart talks we have...
and the fact that he's not easily embarrassed!! :)

Ahhhh... I feel so much better now. 
Justice has been served. :)

Really and truly though.. I hate to get too sappy, but he honestly is all those things and more. 

He was the first person to buy me a paint set and canvases when I confided to him that I'd always wanted to try painting, but had never been able to take an art class in high school.

He dug up a little tree in the dark of night from my Grandma & Grandpa's farm place before it was sold, so we could have a little of their memory growing at our home.

He gives me a hard time about all my "junk" I collect, but he has shown up more than once with a truck bed full of pallets, windows, or old boards for me.. just because he knew I would want it.

He agreed to move back to his hometown (something we read later in my old journal he said he never wanted to do... oops!) and remodel an old farm house.. just because I wanted to.

Just the other day he stopped suddenly in the middle of the road to jump out and pick me a wildflower. :)

AND... he spent his Father's Day setting up our pool.
For the... kids? I think...

If you're curious why this blog is titled "Like a thief in the night" it's because apparently after my very first post when I talked about what I would blog about, he was quite offended that I didn't mention him. So I promised that someday I would devote a blog entirely to him, and it would come like a thief in the night...
Today I am making good on that promise...
I love you honey!!

Thursday, June 14, 2012

Who says therapy isn't fun?

Well... Ella for one.

A few weeks ago our PT dropped off a tube thing-ey that she thought Ella might benefit from and.. enjoy? 
Apparently Ella doesn't agree..

Fortunately we've found some ways to put it to good use.
Child may or may not have pants on here.. Might want to sanitize this Kristene... :)

Isn't this how everyone sleeps? 

back stretcher-outer-thinger... niner......?

good hide-and-seek spot!
Child now has pants on... whew!
hamster wheel?

"He's not heavy.. he's my brother!"

Yee Haw!

strange ostrich-child
he may be stuck
him too..
daredevil stunts

y-M-c-a anyone?
"Hang on. This is gonna be awesome."

While Ella looks on in horrified silence...
Quite certain she will never touch that thing again.

Oh well... we tried!

one week and counting

One week from today I will be doing something incredibly exciting/terrifying.

I will be meeting another child with the same syndrome as our sweet Ella. And not just one child.. hundreds! We will be attending our first National CdLS Conference in Chicago-eek! They hold this event in the US every 2 years and I am so excited to meet the people I have bonded with over Facebook that share in my fears, joys, and every day life. I am excited to learn more about the syndrome and how to best care for daughter. I am also terrified of learning about things my heart may not be ready to accept. I am worried about fitting in with the other moms and feeling "out of the loop" of others who already know each other from previous conferences. I am concerned about navigating our way through a city of over 2.5 MILLION when I can't even follow very detailed directions in a city of 400,000 without a nervous breakdown..

But mostly?? I'm totally unprepared...

(We've only been planning on going for about 6 months or so.. how did this sneak up so fast??)

Here's my list of things to do before we leave next week..

1. Call hotel to find out how early we can check in.
2. Try to remember which hotel we're staying at first.
3. Lose 20 pounds (Thanks for the reminder Becky)
4. Decide where to farm the boys out for the week (kidding.. I have a clue where they're going. kindof..)
5. Do laundry
6. Move the (outside) cat who had kitties (in the house) to the porch.
7. Get a hair cut.
8. Figure out if I want a trim, 4-5 inches cut off, or the full 10 to donate to Locks of Love.
9. Get over insanely guilty feelings if I decide not to cut off enough to donate
10. Spend too much time debating how much to cut off and end up doing nothing. Sorry about the split ends everyone...
11. Laundry
12. Fix flat tire (Ok you got me. I totally added this just for the sake of crossing it off)
13. Put new songs on iPod to listen to in car (yes, we're driving)
14. Clean car so it looks less like Chuck E. Cheese after a busy Sunday afternoon and smells less like my boys gym shorts and soccer cleats.
15. More laundry
16. Pack
17. Realize that even my nicest, most hole-free sweatpants might not be acceptable attire for Conference.
18. Go shopping for new clothes.
19. Feel depressed nothing fits. See #3
20. Charge camera battery
21. Smother boys with hugs and kisses
22. Locate someone's GPS to use
23. Figure out how to use GPS
24. Look up address of hotel in order to program it into GPS
25. See #2
26. Laundry
27. Decide which tourist-ey things to do (any suggestions??)
28. Look up addresses of tourist-ey things
29. Throw out old food in fridge so it's not old+4 days old
30. Worry needlessly about Conference
31. Get oil changed, fluids filled, tired checked (did that yesterday but man it feels so good to cross it off)
32. Laundry
33. Email picture of Ella to the foundation to make pins. (you know.. so we can figure out whose little, adorable, long eyelash-ed, crazy-haired, button-nosed kid is whose.. right Christie?)
34. Get SUPER EXCITED to meet amazing families who from all over the country (might already have done this too..)
35. Try not to feel depressed that they are from all over the country and I probably won't see most again for 2 years at the next Conference in California.
36. Start planning vacation in 2 years (in California)

So basically, I have a lot of unnecessary worrying and laundry to do in the next week...

Wish me luck! :)

Tuesday, June 12, 2012

to paint or not to paint...

The past week or two I've had an itch. An itch I just couldn't scratch. An itch that just kept growing and growing with each passing day, making me anxious, tense, and maybe a little tempermental. An itch to build something, to make something, to DO something..

Typically we spend our weekends working really hard on all kinds of projects around the house, wondering when we'll be done (never), and wishing we had more time for "fun" stuff. Well, the past 2 weekends we have been busy with class reunions, extended family time, camping, fishing, swimming.. all of which were SO FUN! 

But I didn't realize how much I missed that feeling that comes every Sunday night where we finally hang up the tools, sit down and RELAX. Tired and exhausted, but proudly thinking back on everything we accomplished (and how much we still have left..) The past two weeks the time that I could have had to work on something, Ella has decided to skip a nap or just be plain ol fussy.. (I'm thinking about revoking that "Baby of the Year Award" I prematurely nominated her for... seems like it's gone to her head.) and I just haven't gotten that feeling of accomplishment I needed from a job well done. Or really, just a job done. Ok.. let's be real. A job merely started... And I was REALLY craving it.

Thankfully the hubby recognized that strained going-to-hurt-somebody-if-i-don't-use-a-power-tool-or-wet-a-paint-brush-soon look on my face at supper and asked if I wanted some time to myself after the kids went to bed. 


So I took a short walk, then headed down to the barn to build something.. ANYTHING!! 

Did I mention I have my very own grain bin board pile? Yup, I was pretty pumped when we decided I could have that space all to myself. 

Not so happy when it ended up looking like this..

*Sigh... I was picturing something a little more... organized? 

It does make the 'perfect old board' treasure hunt a little more fun... while escalating the risk of contracting tetanus at the same time.. 

Good thing my shot is pretty current.. Funny story-a few years ago I stepped on a nail and as I had NO idea when my last tetanus shot was, I called the doctor wondering if I should come in and get one. The nurse assured me that I should be fine as it looked like I had had one not even a year ago... What??? I still cannot remember for the life of me what I did to get that first one. ha!

Well, anyways, I dragged some real gems from our old barn wood down to the new barn and started working away. 

I had seen this on Pinterest and fell in love.

So I decided to make something similar. And this is how it turned out!

I built it to fit in the space between the living room and dining room, where the wall we knocked out used to be. (which yes, I know, still isn't done. I need to work on developing an itch to finish that...)

But NOW I am faced with a huge dilemma.. I was planning on painting it a similar color to what is in the picture but I am finding I really like it this way too!! It kinda looks nice next to the red brick chimney.. I keep going back and forth on what I want to do and I CAN NOT decide. 


What do you think? Paint or no paint?

Ahhhh.. I DO feel so much better having yet another unfinished project tucked under my belt though... :)

Monday, June 11, 2012

highlight reel

On my last post a friend of mine commented that she had seen a quote on Pinterest that said "Don't compare someone else's highlight reel to your behind the scenes"

Leave it to Pinterest to say in a mere 11 words what I blabberingly used hundreds to try to convey..

That SO describes what I was trying to say. Perfectly. (In case some of you were still trying to figure it out.. It's ok. I understand.)

So here's a few snapshots from our highlight reel this morning..


Total hit

Yes, those are army guys being crushed by hot lava.
And yes, my canister in the background says "brown ugar".. Some little monkey must have tore off my 's'