Happy/Sad Ramblings Part 2

Happy:

I picked about 50 tomatoes out of my garden yesterday.

Sad:

They all had end rot.

Happy:

We haven't spent countless hours mowing our yard this summer.

Sad: 

Our crunchy brown grass gives you slivers when you walk barefoot. 

Happy:

I found my drivers license. 

Sad:

I didn't even realize I'd been driving without it for weeks. I must look too old to get carded anymore..

Happy:

I stayed up until midnight cleaning my house and scrubbing my floor, making it look shiny and new.

Sad:

I overheard Nolan ask Charlie the next morning if the toad he caught peed on him to which Charlie delightfully replied, "Yeah! It's dripping all over the house!!"

Happy:

I had an amazing, fluffy down pillow at the resort in Chicago.

Sad:

I have been restlessly dreaming about it every night since.

Happy:

Husker Football is right around the corner.

Sad:

So is back to school..

Happy:

The every day 100+ heat means we've gotten our money's worth out of our pool.

Sad:

The every day 100+ heat means I have a hot, cranky, tired factory-working husband.

Happy:

Ella's therapists noticed that my house was really clean and that I showered before our IFSP meeting.

Sad:

That means they also notice every other day when the house is a complete disaster and I haven't showered for a few days..

Happy:

We have 8 adorable baby kitties.

Sad:

We've only confirmed homes for 2 of them. Anyone interested?? :)

close call

I like to think my parenting style is pretty easy going. I can handle muddy footprints streaked across the front porch, tunneled earth in my flower beds to try to reach the baby kitties hiding for their lives under our deck, and trampled cabbage plants (ok.. that's only because I have 15 of them).

My carefree attitude was evidenced the other day while we were at a friend's house and the kids were happily playing down the basement. Another mother asked, "Is the basement child-proofed pretty well?" There was a slight hesitation, to which I remarked, "Define child proofed... As in.. we like to let our kids learn from consequences? If that's what you mean.. then yes." To which the other mother immediately rushed downstairs to check on the kids.

This morning the boys were out playing in the sand pile and I went in the house to get Ella down for a nap. She was just about asleep in my arms when I heard blood-curdling shrieks coming from outside. My first instinct was to ignore them. But they grew in intensity. And immediately I remembered the 2 girls who were abducted from a small Iowa town that is not too close, yet WAY too close to home for us.. I remembered telling the boys that if anyone were to ever try to take them that they should scream as loud as they could, biting and kicking and scratching. I grew a little panicked, at least enough to leave the comfy chair I was sitting in, and awaken the almost asleep Ella in my arms to rush to the door to look out.

And this is what I saw...

Welp.. better safe than sorry I guess..

[almost] Wordless Wednesday

Stubborn: (adj.), Adamantly refusing to even consider holding your own bottle, 

yet showing no reservations on a mason jar of sun tea... 

Stubborn

Dear Blog...

Please forgive me for completely neglecting you the past few weeks..

Between our trip to Chicago,

and fireworks..

Followed by a round with the stomach flu,

(No pic here.. You're welcome)

2 weeks of swimming lessons,

and a week of Vacation Bible School..

A crazy day at the Children's Museum where I rushed in only to drop off my 2 boys for my sister to watch (along with 6 of her kids) while I took Ella to two doctors appointments, then rushed back to take over watching my 3 kids (plus 5 of hers) while she hurried to her doctor's appointment, then  rushed back so we could drive 1 1/2 hours back home to entertain guests for supper..
Borderline insane.. I know. But it worked. Somehow..

Some campfire arts and crafts,

tumbling head over heels down 5 cement stairs because we were walking with our swim towel over our head and biting completely through our cheek, causing it to swell at least 3 times it's normal size..
I'm actually bummed it healed up so fast.. I didn't get a real good picture..

BUBBLES!

Time spent with great friends (and a tube),

blatantly ignoring Bob Barker's advice

to spay and neuter your pets...

A little of this..

A homemade slip 'n slide..

And of course our fair share of this..

All coupled with the looming threat of the "S" word starting again all too soon
(yet some days, not nearly soon enough) 

Can you understand why I haven't been around much?

Please forgive me. 

Sincerely,

TSLVBM

(This Summer-Lovin' Very Busy Mama)

The Question

"Awwww... what a cute baby!"

"How old is she?"

I freeze.

Far longer than what is deemed socially acceptable to a seemingly "new" mother.

I consider my options..

Do I answer.....
Truthfully? - "Almost 18 months." Knowing the awkward silence and stares that will commence if I choose this road.
Truthfully with lots of added excuses? - "Almost 18 months, but she's had a lot of health problems."
Close to truthfully? - "17 months." (What?? She's not technically 18 months yet. And sometimes that extra month makes all the difference..)
Flat out lie? - "9 months." Just so we can all smile and move on with our day without addressing any of her "delays."

As many mothers of small children do, I get asked this question a lot while out in public. Most times I mumble her age, smile politely and agree that yes, she is indeed petite, and skedattle on out of there as fast as I can. As much as I want to be open and honest about everything, sometimes I just don't feel like talking about it to complete strangers. Sometimes I just want to finish my grocery shopping without thinking about my daughter being "different" or "delayed." Sometimes I just want people to mind their own business.

But for some reason today was different.

I was just beginning to check out at the store and the lady smiled and asked the loaded question,

"How old is she?" 

I paused, then slowly stammered the truth. "Uhhh... 18.. months," I cautiously replied.

Lady #1: "Oh wow.. she's so little! She MUST have been a preemie."

Lady #2: "Yeah.. how big was she when she was born?"

Me: "Well.... She was 6 lbs 4 oz."

Lady #1: "Oh.... Well...."

Lady #2: "That's.. kinda.. little....."

*awkward silence

And then for some reason I jumped in with

"She has a rare genetic condition called Cornelia De Lange Syndrome."

Lady #1: "What? What's it called?"

Me: "Cornelia. De Lange. Syndrome. It affects her growth and development."

Lady #2: "Ohhhh... Is she walking yet?"

Me: "No." (trying to grab my bags and ease towards the door)

Lady #1: "Oh..."

Lady #2: "Well, you'll have your baby for a long time then, won't you."

Me: "Yup, I sure will." Smiling and finally oh so close to getting out of there.

Then, Lady #2 again: "How old are your boys?" Probably curious if they're actually freak-show teenagers walking around in preschooler bodies.

"Umm.. They're 4 and 6."

"Oh."

And FINALLY exit the store. Whew! I did it.

I don't know why today of all days I decided to open up in public about Ella. Maybe it was because the lady was nowhere near done checking out my items and I knew it would be an agonizing 3 minutes of silence if I didn't explain her age and size. Maybe it was because there was 2 of them and I thought they might gang up and corner me, calling CPS to report me for neglect and malnourishment (although Ella's quadruple-thighs would probably support my case a little). Maybe it was because Ella's getting older so her delays are becoming more obvious to myself and others. Maybe it was because my boys were with me and I wanted to show them that it's always the right thing to tell the truth. Maybe because I wanted to teach them that Ella's condition is not something to hide behind or be embarrassed about talking about. Maybe it's because I'm finally realizing that this is a part of our life now, and it's not something to be ashamed of. Maybe it's because I'm seeing that while I love all our kids equally, perhaps one of the things I love MOST about Ella is her uniqueness and rare beauty and the ways she has helped me grow as a person.

Whatever it was, and however awkward it was I'm glad I took that first step. (And I'm glad I got out of that store with custody of my kids in tact.) Ella doesn't have many of the more obvious features that can go along with CdLS such as limb malformations for example, that distinguish her as "different." I don't get odd looks or stares from people, so it's easy to pretend that everything is "normal." I really don't have much experience explaining her syndrome to strangers.

Sometimes I wonder why I should have to?

When people ask how old Nolan is I don't say, "He's six, but he's only in the 10th percentile for height."

When an old acquaintance ask how Charlie is I don't say, "He's four, but he still doesn't stay dry at night."

When the lady at the checkout counter asks how I'm doing I don't say, "Well, I'm having a hard time losing the last 10 (or 20) pounds of baby weight, I haven't showered in 3 days, I'm already anxious about school starting again soon, and sometimes I struggle with being content..."

No, I don't feel the need to explain the rest of our lives away to complete strangers. So why should I need to explain Ella away?

Why do I have to air out all her dirty laundry for the world to see while I can easily conceal the rest of ours? (Except on my blog.....)

Sometimes it doesn't seem fair. 

BUT.. I am learning that informing people about her condition, making people aware that everyone is made different, can actually make the world a better place for her to live and grow up in. If people can see how happy and sweet and gosh-darn adorable she is, maybe they will start to see all differently-abled people in a new light. To see first hand that yes, my daughter is facing developmental delays and may never lead a "normal" life in society's eyes like many of you do, yet she faces all the same needs and fears and joys as we "normal" people do.

She craves attention and praise just like any other typical kid. When she doesn't feel well, she needs to cuddle and be held. She loves to be clapped for, and when we're in an auditorium she truly believes everyone is finally realizing her awesomeness and applauding her. She can be naughty, throwing her lunch on the floor when she doesn't want to eat or throwing a fit when someone takes a toy away from her. She really is more "alike" than "different."

If I can lessen some of the 'fear of the unknown' from the world that I know I faced when Ella was diagnosed.. If I can enlighten someone's "knowledge" with a real experience.. If I can challenge society's view of "beauty".. If I can step out of my comfort zone and show the world that "different" kids are really not so different after all.. Maybe just maybe, my Ella-girl and so many others can grow up in a kinder, more accepting world.

One grocery checkout lady at a time...

Chicago was...

Illinoing.

(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!!!

Wow...

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.

Wordless Wednesday

Headed for Chicago.. Be back next week!! :)