Tuesday, April 30, 2013

It's Official (Part Two)

 I'm normally a pretty positive person. I really am. 
But my whiney post last week about spring never ever ever coming? 
Well... it actually seemed to work. 

We went from this

to this

 in just 4 days. FOUR DAYS! 
(Yes, I'm choosing to ignore the snow in the forecast for tomorrow..)

We went from snow days to sleeping with the windows open, scooping snow to water fights, hot chocolate to root beer floats, snow pants to bare butts running around the yard. 

I'd call that a success. So, with that kind of turnaround rate, I figure it's worth another shot.. right? 

Here goes..

Ella is never going to walk. 

Never, ever ever..

I have been waiting and waiting. And waiting. Last November Ella started to take her first steps, walking between JJ and I. And I knew she wasn't real close to walking independently, but I thought a few months would be all it would take, at the most. We went ahead with plans to start trying for another baby, fully expecting that she would be walking by the time we announced our pregnancy, or at least by the time I started to get a belly (and a backache). Or by the time the baby was actually born for pete's sake!  But no.. here we are. Stuck at square one. With 3 months to go before I have another child who relies solely on my arms for their main mode of transportation. Don't get me wrong, Ella has come a long way in the past few months. She is much steadier, much more controlled, can walk further distances, can fall a little better, can even occasionally walk a ways, then stop herself and stand still without someone catching her.. but she is NOT walking independently. And it's driving me nuts. 

Some days I watch her and I think she is soooo close! It could be any day now. And then others I see her wobble over and stumble her way around and I think we are sooooo far away.. When will she get the courage to just let go? When will she start running around the house by herself? When can I be done walking in circles around and around our chimney? When will she chase her brothers? When will my back stop aching from the weight of holding her? When will I stop seeing this screaming pick-me-up-NOW face All. The. Time??

And while I'm already here, why not shoot for the moon? I am convinced Ella will also never ever ever like her baths, want to swing outside in her swing, or allow me to be more than 5 feet away from her.

Bottom line (again): I am going crazy(est)

Okay.. and now I wait. 

T-4 days to complete independent walking (and a much happier bathing and swinging time).. right?????

Thursday, April 25, 2013

The New Ride

Something strange has been going on around here lately. It started with a slight brush of a few wayward strands of Ella's hair against the top of the car. That led to a minor scrape of her head, then slowly turned into harder thuds and soon outright concussion-inducing smacks, and I soon discovered something significant.

There seemed to be a direct correlation between the size of my quickly expanding belly to the number of times I knocked Ella's head on the roof of the car, trying to squeeze her in the middle of the backseat of the ol' Impala between two squirmy and rapidly growing boys. But as purchasing a new vehicle is a big commitment, I wanted to make sure.. So I took this profound information and went to great lengths to graph these occurrences. And this is what the charts show.

There's just no arguing with that kind of scientific data. And as I still have a few months of belly-expanding to do, it was quickly becoming obvious.. The time had come to take the plunge into getting a true "family" vehicle.

So we began looking around.. trying to decide what would work best for us. We looked at SUVs, Durangos, Pilots, Suburbans and ultimately *gasp* minivans.. boy did I buck and kick against a minivan. Don't get me wrong.. I dearly love my many friends who drive mini vans.. It just wasn't for me. Ever since I started this journey called motherhood, the thought of owning a minivan has been one thing that just gives me the heebie jeebies.. ranked right up there with projectile vomit in my face and poop in a public pool. I don't know what it is about the van that has me running the other direction.. I mean the features make sense. Stow and go seats! Sliding doors! Endless storage capabilities! Great gas mileage! I get it.. I just couldn't bring myself to go there.. So we looked around. And looked. And looked some more. And nothing we saw seemed like it was going to work for us. And just at the point when I was about ready to throw in the cloth diaper and reluctantly join Club Minivan, we discovered it.

The Chevy Traverse.

(No, this is not a sponsored post, but if Chevy does get wind of it and would like to knock off a certain percentage of my monthly payments, I would be okay with that.)

One Word: LOVE.
More Words: Looks. Prettier. When. Clean.

This new (to us) vehicle has SO many custom features our old car didn't! It's crazy how extravagant it is.. I feel a little guilty driving it around town. Like.. it's a little too lavish for us. I mean.. for starters, the exterior does NOT resemble the surface of the moon.. (Our old car had some slight pretty major hail damage.) And the interior does not smell strangely of dirty diapers and sweaty soccer cleats (although that may be subject to change in the near future). There are stereo speakers in the back that aren't broken out (lingering results from that hail damage) so the kids can finally hear and understand the radio and the seat belts actually latch the first time you try to hook them without shoving them repeatedly together while holding down the button, then releasing at just the precise moment, of course only when running late for school causing you to mutter curse words silently under your breath (not that I've ever done that...) And get this-the seat belt latch for the driver's seat even works so you don't have to use the one from the middle and have your car register that you don't have your seat belt on, when in fact, you do, and listen to it ding and flash lights at you.. Also, one of the more ornate aspects of this new vehicle is the middle console that actually latches so if you try to flip it up, the junk very important contents that have been accumulating for the past 5 years actually stay in place instead of spilling out all over the floor. And another notable quality-the windshield is crack-free and doesn't randomly fog up for unknown reasons causing you to use to make an entire two hour drive barefoot in the middle of winter because you're using your socks to wipe the glass off so you can see (not that we've ever done that either..)  And as if all those showy attributes weren't elaborate enough, it also has.. wait for it... 12 cup holders. TWELVE! That's 6 times more than our old car!  

Keeping up with the Jones's??? No way.. They'll be trying to keep up with us now.                                                                                          

Seriously though.. It's a pretty basic package of a vehicle, but I am possibly just dying for someone to call me when I'm driving. I may have moved up the ranks by a little something called Bluetooth.

And I do exaggerate slightly.. Our old car really wasn't that bad and served us well. It was exactly what we needed for that season in our life and I'm thankful we were able to fit it to our lifestyle as long as we did. But the time has come to move on and make room for bigger and better things.
(Did I mention we can fit SIX kids in this new vehicle?? Hmmm...)

By the way.. on a complete and unrelated side note is anyone interested in buying a 2006 Impala? Runs great.
Would make an awesome work commute car or a nice humbling first teenager vehicle. :)

Monday, April 22, 2013

It's Official

Spring is never coming.

Ever ever ever...

Just for fun pure misery I decided to check my photo archives to see what we were doing at this very time last year. 
This is what I found.

This year?

This is the third week in a row in April that we've gotten a sleet/snow storm.

I'm pretty sure a little sunshine around here would benefit my children's (and my own I'm sure) dispositions a whole lot.. And also help with the bagillion things we have on our to-do list that we are not so patiently waiting for the ground to warm up/dry out to do. 

We're trying to make the best of it, but seriously??

We are out of hot chocolate and I am refusing to buy more. My house is a mess but I am too cozy under my warm blankets to get up and do anything about it. My body is going back into hibernation mode and demanding that I store extra calories in the form of leftover Cadbury eggs for the long, hard months it thinks are ahead. I have tried to put away the winter snow pants three times now without any kind of success. I am dreaming of simmering soups on the stove for supper instead of grilling and picnics like I feel like I should be. I am beyond antsy to start building our fence for animals, but to do that we need to first pour concrete in our barn, and before that we need to put in a hydrant, which would require trenching a hole, which would be great to do without snow and crazy amounts of mud on the ground..

Bottom line: I am going crazy(er) 

Please Mother Nature? PLEASE?? A little help?

Thursday, April 18, 2013

Curiosity presents Opportunity

The other day a fellow mom posted a story on our CdLS Facebook Discussion Board that I wanted to share with you all. I hope it touches your heart as much as it touched mine.

She wrote..

"We had a sweet experience tonight. While at my daughters recital the little boy next to us couldn't help but notice Declan and his helmet. I heard him whisper to his dad "Why does he have that on his head?" Then to my surprise the dad sweetly said "It's ok if you want to ask his mom about it." The boy looked at me and I nodded and he politely asked why he was wearing it. I explained very simply that his head needed a little help to grow the right shape. I told him that it is good to ask questions about things like that. He then said "Can I ask one more? Why does he only have 3 fingers?" Again, I have a simple explanation "Heavenly Father makes everyone perfect, and He knew that Declan didn't need 5 fingers to be perfect!" With those simple questions all the fear and uncertainty was gone. I wish more people would allow themselves and their children the opportunity to be educated instead of being uncomfortable. We hear and see them looking. Ignoring our kids doesn't change them. I told the dad how impressed I was that he encouraged his son to acknowledge mine and ask his questions instead of hushing him and letting him think something was "wrong". I just had to share because I know we have all had the opposite experience."

Wow. What a powerful message. I mean.. we've all done it. Looked a few seconds longer at someone a little different from ourselves. It could be someone with an obvious syndrome, a missing limb, or a noticeable scar. It could be someone toting specialized medical equipment, or merely someone of different nationality. It's usually not done out of a desire to be rude or make that person feel uncomfortable, but rather merely out of curiosity. We're curious what happened and whether that could happen to us. We're curious how they live their lives and whether we know someone similar to them. We're curious about our differences and why they're there. We're just curious.

And that's not necessarily a bad thing. Curiosity is a wonderful tool that presents us with an opportunity for learning, an opportunity for growth. A chance to seek out and understand. A chance to form a relationship with someone. A chance to look outside of our own life and into that of another. A chance to come together to accept and embrace our differences. But sadly, all too often our curiosity has the opposite affect. Our curiosity can cause us to look, but when we're caught in the act, to be ashamed of ourselves and the fact that we noticed our differences. Our curiosity can cause us to feel uncomfortable and quickly glance away. This can give the impression to the person who is 'different' that there is something so horrifically wrong with them that causes you to stare, but not even acknowledge their presence or worth as a human being. This can be entirely defeating to a person who has struggled their whole life to just be "normal." It can crush the heart of a mother trying so hard to build a better life for her child.

The thing I love about this story is that the father didn't succumb to that feeling to turn the other way, to hush his child and squelch his desire to know more. Instead, he gave his son a great gift. The gift of fulfilling his curiosity in a respectful manner and encouraging an opportunity for growth. If that father would have shushed his child into believing that there was something so wrong with this other boy that he shouldn't be talked about or even acknowledged, he would have missed out on an incredibly valuable lesson in understanding. He would have missed out on learning that everyone is different. He would have missed out understanding that everyone needs help at some point or another in different areas in our lives. He wouldn't have heard that God creates all people differently. He might not know that all of us, even people with only 3 fingers, are uniquely perfectly made. He would have missed out on learning that this little boy, though he may have looked different from himself, was just that--a little boy, with feelings and dreams just like his. He would have missed so much..

How many missed opportunities like this do we ourselves have?

I hope the next time we see someone who is different and causes us to unintentionally look a few seconds longer, we take that opportunity to embrace our curiosity instead of run from it. To reach out and give a smile instead of a look of shame, a wave instead of turning the other direction, a friendly "hello" instead of our deafening silence that speaks louder than we know. To embrace the difference in all of us and make this world a little better for ourselves and for our children.

Tuesday, April 16, 2013

Crazy Weather Week

We had a bit of a crazy week here last week. 

Even crazier than normal...
 at least weather-wise. 
Within 24 hours we went from 70+ degree perfect fishing weather 
to a pounding down ping pong sized hail storm, to an entire evening filled with sleet, all the while lightning and thundering, then turning into a snow storm resulting in 2 whole days off of school. 

While we are all hoping spring decides to come someday SOON, the boys at least made the best of it..

Note: I had this post ready to go yesterday right as I heard about the tragedy in Boston and couldn't bring myself to publish it. My thoughts and prayers are with everyone affected by this horrible and senseless loss.

Thursday, April 11, 2013

Thank You For One Year

It's been one year since I posted my very first blog about Ella. One year since I decided to open up and share our whole story with the world. One year since I sat scared and brokenhearted at my computer, debating whether or not I really wanted to hit that 'publish' button. One year. And today as I read through my very first post and reminisce, I am completely amazed by the transformation that has occurred. Oh, I still sat here with tears streaming down my face as I read through it, just like I did last year, but the tears were different this time. So much has changed.

I really didn't know what to expect when I started this blog. I knew I had to let people know about Ella. About CdLS. I knew I couldn't keep living this "lie" of letting people believe that Ella's small size and delays were directly related to her hospital visits for RSV and Salmonella Poisoning. I knew I couldn't keep 'hiding' her disabilities away. I knew if I wanted to reap the full benefits of the blessings Ella was bringing into our lives, I had to first be honest about them. I knew putting myself out there would be scary. I knew I was terrified of what people would think and say. About Ella. About us. I knew our lives would never be the same.

But what I didn't know was so much bigger.

What I didn't know was the insurmountable support that would surround us because of sharing our story. I didn't know how much people cared-people I hadn't talked to for years, people that I've never even met. I didn't know there were others out there struggling with the same feelings I was having. I didn't know I wasn't alone. I didn't know I would inspire people with our story. I didn't know I would become someone others reached out to when facing a scary situation with their kids. I didn't know how much healing I would find from being honest. I didn't know how writing would help me process the difficult and laugh about the good. I didn't know how much this blog would change me.

I can't say THANK YOU enough to everyone who has followed along and supported Ella, me and our entire family on this journey. Thank you for being there for me and walking alongside me this past year. Thank you for laughing with me (or at me.. whatever) when I needed relief. Thank you for allowing me to, and for celebrating the 'little things' with me. Thank you for crying with me when things were hard. Thank you for holding me up when I was down and supporting me when I needed it most. Thank you for sharing your own stories and trusting me with them. Thank you for encouraging me. Thank you for seeing the beauty that I see in my daughter, not despite her disabilities, but because of the ways they've made her, and us, stronger. Thank you for accepting her just the way she is. Thank you for reading. For sharing. For commenting and 'liking' and making this girl feel so incredibly loved.

As I enter my second year of blogging I am excited to see where this year will lead me. 
Knowing what I know now, it's sure to be life changing. 

Thursday, April 4, 2013

The Padded Room

It's been five weeks of sick kids. Five loooooong, agonizing, painful weeks where I did seemingly nothing but wipe noses, suck snot, hold Ella, go to the doctor, clean up puke, wash sheets, administer medicine, hold Ella, clean up puke, wash blankets, go to the doctor, give more medicine, wipe tears, hold Ella, clean the toilet, disinfect the house, hold Ella, wake up 20 times a night, give hugs, rub backs, hold Ella..

And today I find myself in a padded room.

No, I was not admitted to the psychiatric ward. Although I think I came close.. I almost lost it somewhere during week 5. Or maybe I did.. No, the padded room is my creation entirely for Ella. (Although there is a chance it could come in handy for me if another single person wakes me up this week puking/coughing/or fine.. in general just wakes me up this week...)

For months I've been conflicted on how to answer the questions "Can Ella walk?" I always answer with a hesitant "No, not yet," but the truth is, yes, actually she can walk. I've seen it. What Ella can't do is fall. Or, I guess she can't fall the right way (aka: without a concussion or needing stitches) So she doesn't. Walk that is. If she weren't so darn afraid of falling, or knew how to catch herself at least, I just know she would be able to take off. And my tired back so desperately needs her to take off.

So this week, now that we are finally healthy, we are working on falling. Not walking.. but falling. And where better to fall than a padded room?

We set up a ring of pillows/bean bags/blankets/whateverwecouldfind around the coffee table for Ella to fall on to. 
(For the first time I was thankful that JJ agreed to let the boys keep the old stained, ripped up cushions from our old couches after they were in hysterics for hours upon learning the tragedy that we were getting rid of them..)

Then I set her loose.

She was pretty proud of herself.

And seemed to enjoy it.

But was thankful when it was time for a well-deserved break

and ready for a nap.

But Charlie was especially thankful when Ella was done so he could use the pillows for their one true purpose..

*Note: There were not the pictures I wanted to use for this post, but the awesome pics I took previously were on a SD card that decided to fail me this morning.. So I had to settle. Of course I wasn't all that happy with the first set of pictures either, but once they were lost, locked away forever on that little square of plastic they suddenly took on the role of 'most prized and perfect, irreplaceable photos ever taken'. Sigh.. And yes, in case you're wondering I am raiding the kids' Easter candy right now. And why yes.. it is making me feel better.