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.


  1. Kimberly Mueller-MaloneJune 29, 2012 at 6:01 PM

    Love the last pic - pink skirt AND pink boots?! Where can I find those in my size? First off, when I visited Chicago, we didn't drive anywhere. Flew in and either took the monorail or walked wherever we needed to be. We also went in December, so I'm guessing the cold weather deterred most of the crowds. Maybe you'd like it better if you'd travelled with me. =)

    Second, I'm sorry to hear the conference wasn't as informative as you'd hoped. Perhaps you've made new contacts that will prove more worthwhile later. (Bear with me, I'm not good at the "silver lining" thing. Haha!)

    Third, what do you have going on in July? Maybe writing it all down will put your mind at ease. Or maybe others could suggest ways to tackle it all.

    Glad to have you back!

    1. i wish we would have been smart enough to take the monorail!!! that would have saved us SO much hassle! i think our mindset didn't match chicago either.. we weren't prepared for an all-day walk around type thing. we just wanted to get in, do our thing, and get out...

      i was hoping we'd get more info too... but we did make some great friends!!

      and i think writing everything down has made july worse... lol. looking at my calendar makes me stressed! ella has at least 1 weekly dr appt in omaha or SF in addition to the boys dentists appts and nolan ENT appt. also swimming lessons, VBS, and i just agreed to paint a mural in a school... eek!

  2. I still think it's fantastic that you went and got to meet some great people with kiddos like Ella. Randomly enough, one of the kids at my school that went off to 6th grade this year has CdLS and it's weird that I came across your blog that has that same connection :o) We just got back from a trip to San Diego and after 13 hours of driving I somehow managed to mow the lawn, vacuum, water the plants and do a load of laundry!

    1. oh that is random! not many people have heard of it. and i am in awe that you were able to do all that after your trip!!! i could barely function all week! lol

    2. Not sure either. I felt it the next day as I was sick to my stomach. Go figure!

  3. Maria,

    I love reading your blog and I love your heart. Your kids are so blessed to have you as their momma and JJ as their daddy. Love to you!


  4. Illinoing...that made me laugh. Glad you were able to make it to your conference!

    1. i'm glad another (adult) found that amusing!! my husband just rolled his eyes.. lol

  5. I thought Illiniong was funny. Glad to hear you got to meet some fantastic people !

  6. HA! I love it and I too hate when a cute kid gets the credit for my hilarity! I say, who cares if the joke was already told by someone else's adorable child? When I said it, it was funnier! ;o) I looked at your Wordless Wednesday post before I read this one and have deduced that you may be the parent of some of the most adorable children EVER! Also, my husband refuses to go to Chicago (for ALL of the reasons you mentioned), so I will not share this with him or I may NEVER see it...

    1. Haha thank you! Chicago didn't really work out well for us... Our mindset was "get in and get out." That doesn't really happen.. But if you go with that mindset maybe it would be better! Also DO NOT drive!! If you do drive (I don't know where you live) park somewhere and take the monorail or bus or something.. anything other than you car! lol