Monday, March 25, 2013

Birthday Extravaganza per Ella

I mentioned there was some strange happenings going on around here the other day..  It all started out innocently enough with a single present, some cookies, ice cream.. all stuff I could handle and may have even slightly enjoyed.. (What?? legos are strangely tasty..) But it got worse. Much worse. As the weekend progressed, a full out Birthday Extravaganza ensued. A million people filled our home, (okay fine.. more like 30. Whatever..), there was special cake and ice cream,

Ninja Turtles

more Ninja Turtles,

and I even heard rumors of Monster Trucks..

Without me. 

Well, I'm here to tell you that I've had enough of birthdays around here. I'm ready for this house to revolve around me again. Even though I of course didn't show it and barely acknowledged any of them, I secretly enjoyed having 5 therapists here to see me and only ME today. You may think that being held or having direct contact with someone 23 out of the 24 hours a day would be enough, but it's just not. I've got to do something to get that extra hour of my day back.. I'm thinking coming down with that stomach bug Nolan had yesterday sounds like a good plan. What do you think? Can my mom handle Sickness Week #5??

Happy Birthday Nolan!

Thursday, March 21, 2013

Dear World, From Ella

Dear Blogging World,

I am writing to inform you of a very serious injustice currently being committed right here in my very own home. As many of you know I decided to let the cat out of the bag a few weeks ago and clue my parents in that I actually can climb the stairs by myself. At first they were very excited and I got an outrageous (yet entirely appropriate) amount of claps, cheers and praises. Hugs and kisses were doled out on a minutely basis and life was oh so good. But after only a few short days I noticed something not quite right.. As I crawled around the corner to perform my newest death-defying trick, I saw it.

That's right.. portable baby jail. 
How could they?!?

 I worked so hard on keeping this secret from them from so many months. 
They waited so long to see it. And now it is being denied me??
Well played parents.. Well. Played.

They couldn't possibly be banning me from the stairs because I often get to the very top, stand up, let go, and decide I would rather walk down holding the railing than crawl down backwards like mommy taught me.. Who cares that I can barely even reach the railing.. that's how everyone else in this house gets down the stairs, why can't I?

And I'm sure it's not because sometimes I just stand on the stairs and scream because I would rather have mommy carry me down than do it myself.. What? Just because I can do something doesn't always mean I will. (note: I NEVER do this for dad..) And mom-you of all people should understand this.. You physically can go wash those dishes right now, can't you? That's what I thought...

I'm fed up with it.
This baby jail is putting too much of a damper on my daily fun of sneaking out of the room 
to tower on the top stair with no hands and give mommy heart attacks.
I fully expect that with your help this issue can and will be resolved in a timely manner. 
Until then I will continue to handle myself with the great dignity and self-respect I have been..

Oh.. and it seems something else strange has been going on around here today. 
Presents and cookies and ice cream and specials treats like skipping rest time and watching movies.. 
but apparently it's not all about me so I'm not too concerned.. 

Sincerely, Ella

Happy Birthday Charlie!

Monday, March 18, 2013

Weekend Update

Here we are.. entering Week #4 of random illnesses rampaging our house. Week #1 found us battling some kind of stomach-achey-don't-feel-like-eating-crabby-all-day-clingy-and-whiney-bug-thingey. Week #2 was a stuffy-runny-nose-bronchitious-cough-crabby-all-day-clingy-and-whiney-bug-thingey. And Week #3 was a doozey, presenting us with RSV-and-Strep-crabby-all-day-clingy-and-whiney-thingey... (Anyone notice a theme here??) Of course this last illness came directly on the heels of me bleaching every doorknob, light switch, and surface in our house and actually feeling like I had my life together for a day or so.. making pre-made freezer meals, keeping the house picked up, dishes done, and not succumbing to my usual attitude this time of year of "Eh.. I'll mop when spring is over." 

And the universe rebelled. 

We were hammered with 10 inches of ice and snow on Monday

then RSV and Strep for Ella on Wednesday, Strep for Nolan on Thursday, and an ever-present, constant, cannot stop for a single minute cough for Charlie lasting alllll last week and into this. 
(Do I sound frazzled? I feel frazzled..)

Has anyone else ever had fish? And maybe you neglect to clean their tank for... far too long. And one day you realize you can't even see your fish through the haze of scum and grime.. And you decide to clean the tank. And you scrub and scrub until it's sparkling and shiny. And you put the fish back in, expecting them to thrive in their new bacteria free environment. And you wake up the next morning to find them floating belly up. Because their poor little bodies just couldn't handle the shock of these conditions..

Yeah.. that's how I feel. I guess perhaps our bodies just aren't meant to have our lives all together... 
Oh well. It was a good run. 

On the up side, Ella is getting pretty good at this sick thing. I found her taking her own temperature,

then crawling around with a medicine cup, apparently self-medicating.. 
And then later sticking the snot sucker up her nose and sniffling. 
Followed by promptly putting it in her mouth.. Ugh.

But anyways.. thank you for all your thoughts and prayers and concern last week. We seem to slowly be on the mend and are pretty excited that Ella managed to stay out of the hospital and without any exciting emergency transportation this time.

I am hopeful (fingers crossed..) that week #4 will be a week of healing and a turning point for our disease-stricken home so we can get out and enjoy this spring weather.. you know.. whenever we start to get it. 

Friday, March 15, 2013

Bloggin' Blues

I'm going to be honest here.. I've been feeling a little down about my blog lately. A little unsure of where I'm going with it and if it's worth the effort. There have been many evenings lately where I put the kids to bed and am unable to move from my spot on the couch until after I have been asleep for many hours and husband says "It's time for bed." There are so many projects I want to get done, books I want to read, a house I really should clean, a baby in the making, and on top of all that do I need the added pressure that I should really be writing a blog post too?

Not to mention I don't always know how other people perceive me through this. I'm really a very private person and never thought I would be putting my life out there for the world like this. I have received many kind, encouraging words along the way and don't get me wrong.. I don't do this as some sort of popularity contest. I really try not to put emphasis on how many likes or comments or pageviews I get. But that being said, it can definitely be hard to pour my heart and soul and much coveted and precious time into something and throw it out into cyber space for all to see, only to receive 0 feedback on it. It leaves me wondering "Did I say something wrong? Did I offend someone? Are people bored? Do they even care???"

I've had a lot of thoughts lately that maybe I should call it quits on the blog.. Maybe I should spend that time doing something my household would appreciate more.. something exciting like picking up toys or washing dishes. I hardly have any energy left in the evenings after the kids go to bed in the first place, do I really want to use what little I have on something I don't know if anyone likes or appreciates anyway? (Not that my children would appreciate picked up toys or a sink full of clean dishes either..) I've been down on myself. Hard on myself for not making more of an effort to write more. Be more creative. Network more to reach more people. I've been thinking maybe I should just close down shop. Live my life without the need to reveal all my embarrassing flaws to the general public.

Until the other day. When I received an email from a sweet mother who also happens to have a baby with CdLS. She wrote me the kindest note saying how much she appreciated my blog. How she's read our entire journey. How she hasn't been able to reach out to anyone else in the CdLS community yet. How what I've written has made her feel for the first time that someone actually understands. That someone actually gets her. How reading Ella's story gives her hope for her daughter. And she thanked me for writing.


I was flooded with much needed reminders of why I write this blog in the first place. It started as a way of healing for myself and informing others about Ella's diagnosis. But it's growth to what I hope to be a source of encouragement to others, to both those in a similar situation and not. I realized again that it doesn't matter how many 'likes' I get or 'comments' are posted. It doesn't matter if I win any awards or are featured in a magazine's 'top blogs' list. It doesn't matter if I have 1000 followers or 1. It truly doesn't matter. If that one follower is someone that needs to hear my words at that moment and is someone I can reach out and provide comfort for, then it is worth it. Thanks for reminding me.

Thursday, March 7, 2013

Mozart Ella

I mentioned a few weeks ago that Ella discovered we own a piano. I'm not sure how it happened.. A boy must have come by and randomly pounded on a key (we obviously don't play it much..) and Ella was intrigued. Her curiosity led to fascination. Which led to complete and utter obsession. 

Ella LOVES to play the piano. 

The past few weeks we have endured many hours stationed at the piano bench, countless meal times of whining fits because she can see the piano from her seat at the table, and many pounding headaches from all those pounding keys. And.. it sounds crazy but it really seems to be paying off. She's actually getting really good. 
She.. well.. just check it out for yourself.                    

Tuesday, March 5, 2013

A stubborn girl

Ella is stubborn. She likes to do things her own way, in her own time. She doesn't want to be told what to do. She wants it to be her idea. If you try to make her do something she doesn't want to, she digs her tiny little heels into the ground and refuses to budge an inch. She is also a perfectionist. She doesn't want to show us anything new until she's positive she's not going to make a mistake. Until she can do it perfect. I, of course, have NO idea where such characteristics came from and have absolutely no firsthand experience with it myself.. Huh. Must just be one of those rare, spontaneous genetic chromosome mutations we've learned so much about.......

You all remember that one day a few almost SIX months ago when I posted about Ella climbing halfway up the stairs, right?

You remember how excited I was and how this was a new chapter in our lives? And how this meant so much with her progression and independence? Well.. what I've failed to mention since is that she has refused to climb the stairs again. Not just the stairs.. a single stair. That's right, this little girl who can climb, has refused to climb. I usually let her go at her own pace at learning things. I know she doesn't like being told what to do, but since I knew she already can do this, I wanted to push her a little to do it more and get a good workout at the same time. Just the other week I set her on the first stair, then sat one above her with my arms stretched out, ready to help pull her up into my arms and proudly love on her for doing such a good job. And what did she do? Stayed on that stair. Screamed. Refused to move. Showed me she knew how to climb down that stair backwards, and crawled around the corner, wailing for the world to hear about what a unfair and horrid mother she has.  *Sigh...

So imagine my surprise when we were hanging out on a normal Saturday morning last week.. I was in the kitchen washing dishes and folding laundry (normal activities). JJ and the boys were picking up the toy room (fairly normal), and Ella was happily crawling around the house on her own... Wait-THAT was NOT normal, but we were going with it.. Needless to say, I was ecstatic about her sudden independence on this day, but I of course didn't want to acknowledge it. I knew that would end it. So I kept myself busy.. Not wanting to make eye contact or sit down for fear it would be all over, I ducked my head and ran upstairs to put some laundry away. Because I'm awesome like that and always put my laundry promptly away as soon as it's out of the dryer and folded. (Okay fine.. not really. I just desperately needed the extra basket that hadn't been unloaded for 2 weeks for more laundry.) While I was occupied I heard a thumping on the stairs. "Must be a boy needing help with something," I thought. I continued hanging clothes up. More quiet thumping. I listened. And heard both boys' voices seeming to come from downstairs. Is it a cat? I cautiously rounded the corner to find out. And who do I see teetering at the very tip top of the stairs?

None other than Miss Stinky Stink herself.. who just climbed the entire staircase by herself.

She is now completely obsessed with climbing up and down the stairs all day long and so very very proud of herself. Because it was her idea. I am so happy for her. I am. But seriously.. does anyone have any good ideas on how to make walking seem like her idea?