Wednesday, October 31, 2012

A "Super" Halloween

So I may be slightly anti-buying-your-children-adorable-yet-oh-so-expensive-Halloween-costumes-they'll-only-wear-once-for-just-a-few-short-hours.. I think it's a little ridiculous. I think it's a total waste of money. I think Halloween should be about being creative and using what you have.

Ooooorrrr maybe I'm just a little envious that we don't have it in our budget to spend that kind of money on making our children look super fabulous for those few hours... Either way. We don't do many store bought Halloween costumes around here unless that store is Goodwill. But let's face it... homemade costumes are WAYYYY better than even Goodwill, right??


That's why I decided to make my kids these super adorable superhero costumes from old t-shirts this year! Creative, inexpensive AND using what we have. Score!

*Shout out to Daddy and Uncle Tom for their old shirt donations!!

I used tutorials from here, here and here.

And they went off completely without a hitch!

I mean.. if you don't look at the skipped and knotted up stitches on the back of the capes because when they say 'don't sew over the non-sew interfacing' they really mean "DON'T SEW OVER THE NON-SEW INTERFACING"... or if you look past the bias tape seam that I put right smack in the middle of the masks instead of on the edge like a smarter person would have done.. or if you don't notice the shorter patch of carpet that is now our living room floor, suspiciously in the shape of a batman logo.. (hey-my husband ALMOST didn't notice me trimming the carpet he was so absorbed in the Sunday Night Football game.. so close!) or if you dismiss the fact that I spent so much time thinking about sewing the capes and masks and power cuffs I didn't even consider what they would wear UNDER those capes until.. oh... last night and the costumes are pretty unimpressive from the front which is where most people saw them from.. (in my defense I assumed a Nebraska October might include snow and winter coats.. NOT a balmy 65 degrees...)

And of course if you don't count the glaringly obvious reality that spiderman doesn't even wear a cape..

I think they turned out ok. ( - :

Oye... Maybe I should start saving now for some nice store-bought costumes next year...

Happy Halloween anyways!!

Monday, October 29, 2012

Change in my Heart

I know I've blogged here before about how Ella has changed my life. I know I've written about how my mind and heart have been opened to people and things that are "different." I know I've talked about the blessing her life has been to us.

But I didn't really realize how much she had changed me until last week.

On Friday Charlie had a day off, so I took him (and Ella) to the Library Story Time we've been going to for the past 3 years, but have been unable to for the past few months because of preschool. Since we hadn't been there in so long I didn't really know any of the other moms, but there was one little boy that was familiar. He was about 8 or 9 years old. And he had Down syndrome.

As I moved toward the bench to sit next to him I found myself staring into his almond shaped eyes and I felt something different inside me. It was subtle. It was unrecognizable to those around me. But I felt it. Where once I might have seen a disabled child, I suddenly saw a life full of hope and potential. Where before I would have felt pity for him and his family for their "hardship," I now felt joy for their blessing. Where once I used to wonder why his babysitter brought him to story time when it sometimes looked like a hassle to try to control his actions, I felt pride at seeing all the things he could do and the way he tried so hard to "fit in."

I wasn't intentionally trying to be more accepting or loving that day. I didn't force myself think any of those thoughts. Down syndrome was the furthest thing from my mind. (Wearing the kids out so they would take good naps was probably taking over at that point..) It was a heart-changing, life-altering moment when I sat down next to him and instead of smiling politely and diving back into my own self-absorbed life, I took a minute to really study that boy. I looked deep into his eyes and a beaming genuine smile came from the bottom of my heart. And you know what? He let out a slight sigh of relief and the little smile he gave back to me was the most beautiful I've ever seen.

It's a good thing I didn't really know any of the other moms there because as I sat there looking like a fool, listening to "Hallo-weiner" with tears rolling down my cheeks, I realized that for the first time I was looking at this person, this beautiful child who just happens to have an extra chromosome, in a whole new light. For the first time I saw the beautiful, unique person who was fighting through the shackles of the world's view of the world 'disability.' For the first time I saw him for who he really was as a person, not as a diagnosis.

I knew Ella had changed the way I think about her. I knew she had changed the way I love my own children. I knew she had changed my own little world. But I didn't realize the extent of how she has changed the way I see the entire bigger world around me.

I don't think I ever mindfully was aware of how I was reacting to this little boy in the past. It wasn't that I was consciously shooing my children away from him so they couldn't interact with him. It wasn't that I willfully didn't want to help him. It wasn't that I ever said outloud that me or my family was better than him. But it was more of a silent attitude I had in my mind and heart. One I wasn't even aware of. I just didn't know.. I hadn't been around a lot of people with Down syndrome. Hadn't purposefully put forth the effort to put myself in that situation. Hadn't educated myself about the truths of Down syndrome. And for that I am ashamed.

The month of October is National Down syndrome Awareness Month and my friend Deanna had been blogging about it every day. I didn't feel the need to post much about it here because.. well... Ella doesn't have Down Syndrome. And it's about all I can do sometimes to focus on CdLS. But today I want to take the time to bring a little awareness to people with Down Syndrome as well.

Did you know that following a prenatal diagnosis of Down Syndrome, over 90% of people decide to abort their baby? OVER NINETY PERCENT!!!! Oh how my heart hurts to think of that...

Going through a similar situation I KNOW how hard it is.  I KNOW how scary it is. I KNOW how the uncertainty of the future scares the living daylights out of you. I KNOW you want to run and hide and you might think this is the worst thing that could possibly ever happen to you.

But do you know what I also know?

I know the joy these children bring into your life. I know the way they change you for the better. I know it's not the end of the world. It may feel like it, but I promise you it's not. It's merely the beginning of a whole new existence you never dreamed was there.

In honor of my friend Deanna's blog and her gorgeous daughter Addison.. In honor of everyone who has Down syndrome or knows someone who does.. Please PLEASE take a minute to educate yourself. To get to know someone affected. You won't regret it.

Deanna and Addison for helping make me aware and sharing your joy in my life.

Thursday, October 25, 2012

Ode to the Paci

To My Beloved Paci:

You're the only one who's been there for me since Day 1. 

(Besides my mom and dad.. and brothers. and you know.. Grandmas and Grandpas.. aunts and uncles.. cousins.. friends.. neighbors.... and everyone else I know..) 

But besides all them.. You're the only one who's truly been there for me.

Even if you weren't always in my mouth, I knew you'd be close by

Only a slight whimper and a helping hand away..

ready when I needed you

Or when mom needed you because was tired of hauling around those rolls..
(I have no idea what she was talking about because she was NOT making breakfast)

You saved me many-a-tummy ache because this is what I would do without you

when mommy tried to get a picture of me in my very first leg warmers (or any other time for that matter)

You became especially important when I was very very sick and needed to relearn how to suck on a bottle.
(Happy Halloween a year late since no one but my nurses got to see me rockin' my costume over those awesome hospital scrubs..)

You loved me when I had my feeding tube in

and you really stuck by my side when I was supposed to be eating but refused to
for months and months on end because.. well.. I just wasn't ready.
(And I kindof wanted to see if mom would really pull all her hair out.)
I don't know if I ever told you thanks for that...

You've been there for all the special occasions..

My first smile

My first Christmas

My first Birthday

And my first day without my NG tube. Woot woot!!

You've always encouraged my diva fashionista skills,

yet you were real... you never minded where we napped.

Maybe most importantly.. you've made life with my brothers..

 enjoyable bearable

I loved to take you swimming,


and dancing

I'm gonna be honest..

I've strayed away a few times.

I've tried to replace you.

But nothing could ever come close to the way you've made me feel.

I've loved you backwards

and sideways.

For over a year I knew you only as orange. But you really blew my mind when your chameleon qualities emerged. One day after an unfortunate run-in with Papa's dog you suddenly changed to purple.

and then pink!

But now I feel like you're just starting to try too hard.. Green? Really??

It's becoming apparent to me that maybe it's time to move on.
And when I say "It's not you, it's me" it's actually really you.
The thing is.. you make me feel tired. You make my eyelids droop.

Bottom line: You make me fall asleep.
And since I've decided I no longer want to take naps nor fall asleep easily at night, we just need to be done.

I know it will be a little awkward for awhile.
My mom and dad really liked you.
They keep asking about you. Wondering what went wrong. Trying to set us up again.

It's not going to work.

I'd like to say that maybe some day we could be friends.
But the truth is.. I really don't think we can be.

We. Are. Over.

Thank you for the past 21 months.

You'll always have a special place in my heart.
Just not in my mouth anymore.

Tuesday, October 23, 2012

Bad/Good News + a Video

Bad News? 
I STILL can't figure out for the life of me how to upload the videos from my camcorder to my computer..

Good news? 
You get the next best thing! A low quality, bad resolution video made by yours truly, using my old digital camera/camcorder, recording the video I wanted to share that is playing on my TV which is hooked up to my new camcorder..

Try to contain your excitement people...

I don't know if your children turn into spawns of satan are a little unbearable 
when they are sick like mine.. but the past few weeks have been long, hard and exhausting..

But the tell tale sign your family has been sick WAY TOO long?

The classic baby fake sneeze attack

The boys both did this when they were little as well and it makes me SO happy that Ella is doing it too.. 
Is it normal that my baby fake sneezing makes me feel normal? Normally?

And now that I've figured out a way around my terribly un-techyness I just might be unstoppable!
(Sorry.. I still haven't found a way around my terribly un-vocalularyness...)

Look forward to more grainy, blurry and best of all second-rate low quality videos!
You'll only find them here at Life on M Avenue!

I can almost feel your anticipation seeping through these blog lines!
Or maybe that's the feeling of the mob of people hurrying to click the "unsubscribe" button...

Friday, October 19, 2012

Celebrating Life

This week we celebrate life.

We could choose to be sad over how we were forced to spend 5 weeks of our life last year.
We could be upset that Ella got so sick when she maybe shouldn't have been discharged in the first place.
We could be angry about the stress it put on our lives.
We could be miserable thinking of what could have happened.
We could struggle to find our way back to "normal."
We could spend our days worrying and fearing for the worst.

But we are choosing to not do any of those things.

This week...

Ella (and Charlie) started it off with a bang by blessing us with their presence and staying up 2 hours past bedtime..)
This week there were leaves to walk in..
and jump in
over and over.
This week there was family time
and daddy time.
There was giving mommy a heart attack time by grabbing a whole slice of apple and eating the entire thing..
un-doing all of mommy's laundry folding,
and lots of "hanging out" time.

Best of all? Everybody sleeping through the entire night in their own beds THREE nights this week! Woo hoo!

Nothing makes you want to celebrate life more than a full night of sleep!

Yes, even this week.. especially this week... for many many reasons... we celebrate life. 

Wednesday, October 17, 2012

Back at the Hospital

Don't worry.. we're not sick.

Yesterday Ella had a few Specialty Doctor appointments. Back at the same hospital she spent 5 weeks in. Last year. At this exact time... It was a little surreal being there.. seeing the familiar hallways, same receptionists, lunch ladies.. We've been there a few different times during the past year, but yesterday was different, knowing it was exactly a year ago that we were in this same building fighting for our daughter's life.. making decisions that could ultimately decide if she lived another day.. the same place we slept in, ate at, shed a thousand tears and prayed a million prayers.

A few weeks ago when I realized that our appointments randomly coincided with Ella's 1-year anniversary, I thought it would be neat to take a visit to the PICU to celebrate, but after finding out we probably didn't know any of the doctors or nurses up there at that time we decided not to. I was a little disappointed at first.. I wanted to see everyone. Show them how far Ella has come. Thank them yet again for making today possible. But I suppose it's a good thing we don't know anyone. It means we haven't been there for awhile. It means we've stayed healthy. It means we, and everyone there is moving on. That life in the PICU is a part of our past.. not our present. (And hopefully not our future!)

So instead of visiting the PICU between appointments Ella and I enjoyed a nice lunch in the cafeteria together. While I've eaten that food so often I think I've had everything on the menu.. Twice.. I realized it's probably the first time Ella has eaten there. Last year at this time she was enjoying a hearty meal of TPN liquids through her IV, then later Nutramagin through an NJ tube straight into her intestines, and finally an NG into her stomach..

What a difference a year makes..

Cheeseburger and fries please.. Do you Supersize?

Of course while we were enjoying our lunch date almost every single person who walked by had to slow down to admire this precious girl sitting so big in her high chair. Some had to physically stop just to smile and remark on how adorable Ella is. She caused a little hiccup in the middle of everyone's busy lunch hour and seemed to bring them a moment of happiness. She tends to do that to people...

What? Doesn't everyone eat in their chair sideways?

And backwards?

And upside down??

Or maybe everyone was stopping to look at us because after about 20 minutes of sitting there 
I finally realized we sat at the table that was very clearly reserved for guests using wheelchairs...
Wow.. Seriously.. How did I miss that sign that I set my tray down RIGHT next to?

And the best part about being at the hospital on this day a year later?