Spring

[The catkins on my weeping pussy willow tree.]

Spring is here at long last. I survived the winter; the cold and barren winter.  All around me I see color and beauty. I feel warmth. I smell the sweet air. I hear birds singing outside my window. The world has come alive again.

And within myself I feel a renewal too. I feel a desire to better myself; to push myself to new limits; to make resolutions; to live up to my potential.

Last night I sat in bed and wrote. I wrote a list of things I want to accomplish and things I want to change. I evaluated the person I am compared to the person I should be - the person I can be. I love that life is continually about growing. It's never too late to start towards a new goal....and no goal is ever too far to reach.

Life is Exciting.

 

[Blossoms in my backyard!]

  

[Pops of color in my front yard.]

  

[The grass is greening!]

 

[My tulips are popping up!]

  Welcome, Spring!

One Fell Off and Bumped His Head

Death 
of a 
Sock Monkey.

 

This one met its demise with Elisabeth's teeth. 

Farewell, Mr. Sock Monkey. You served us well.

Plow Pose

 

18 months. 

It's been 18 months since my back surgery. 

Oh, what a difference a year and a half makes! Before my spinal fusion I couldn't stand straight, I walked with a cane, and I was living in excruciating pain. And now - well...look at the picture above!

Many people who have gone through the same surgery told me that I would never feel 100% again. I am pleased to say, however, that I am at least at 99%. I actually feel better than I ever have. That missing 1% only comes from the fact that when sitting with my feet in front of me I cannot bend forward. My spine just physically can't move like that anymore. But - other than that - perfecto!

I am blessed to live in a place and time where they can do things like fuse spines. To me, having a healthy back wasn't about my own well being...it was about Elisabeth. I needed to be strong and stable again so that I could care for her. It was crucial that I make a complete recovery, and I did.

Never again will I take my spine for granted. The ability to walk, to stand, even the ability to lay flat on my back - those are things that I cherish now. And most importantly, I can take care of my precious little Elisabeth; I can be the mother she needs me to be.  I am blessed.

p.s. Between Elisabeth and myself, it seems that all I post about are spines!

Butterfly Armor

Yesterday, Elisabeth had a fitting for her new back brace. During the fitting they cut it back and trimmed it here and there. They even carved out a hole for her tummy/g-tube.

She hated every second of it:

Elisabeth's new brace takes her spine from a 75 degree curve to a 40 degree curve. It can also prevent further curving of the spine - if we can get her to tolerate it. We are starting off by having her wear it just an hour a day. Every week we will increase it by an hour. 

The tricky part is balance. Elisabeth has always folded forward when sitting on the floor. With the brace on she can only sit straight up and so within about 60 seconds she tips over. She'll get there though, little by little (I hope!).

 

And now I present you Queen Elisabeth in all her gear:

Oh...and look!

Her new brace and her AFO's have matching butterflies! A girl must coordinate!

 

***My dear friend, Lee Ann, contacted me yesterday to tell me that her cousin was just diagnosed with metastatic melanoma to his brain and lungs. Please consider making a donation to help their family through this difficult time. Click here for details.

8 Years

Happy Birthday, 

House!

Eight years ago this month we moved into our home. We love this house and feel incredibly blessed to have our own little place in the world. Traditionally, we have had a birthday celebration of sorts for our home every year (the girls will bake a birthday cake this week!). This gives us an opportunity to reflect back on the past year in our house; improvements we have made, milestones we have hit, struggles we have faced, joys we have shared. So much happens within the walls of a home and I am so grateful to have a place to gather my family and feel safety and peace.

In honor of our eighth year here, we finally purchased something that we had been talking about buying for, well, the last eight years! A storm door. No joke, our last house had one and we loved it. So for eight years we planned to get one for this house. Eight years - it only took eight years. And now that it is finally here, oh, how I love that storm door! (see photo above). Having the front door open and letting light from outside flood through the front entryway and into the family room - it is absolutely glorious!

 

One of my favorite things is when I am arriving home in the evenings after yoga. As I pull up to the house I can see a five foot tall giraffe standing tall and proud inside the house. It is pretty awesome. 

 

Happy Tuesday to you. Elisabeth and I are heading to Spokane for a few appointments. This is our fourth trip there in past three weeks. Yikes! She gets her new back brace today. It is supposed to have matching butterflies to her leg braces. She is going to be adorable in her armor of butterflies!

The Case of the Missing Instrument (literally)

 

This weekend I kicked off my Spring Cleaning 2013. I began in the parlor. I put away records that had been sitting out since Christmas, I sorted through all of my music, I organized items in the piano bench. 

Then I went to the corner next to the organ where I keep most of my instrument cases tucked away. 

One-two-three-four-five-six-seven. (Plus the two in the upstairs hall closet.)

Nine. 

Nine cases. 

I counted the instruments (excluding the piano, organ, and xylophone). 

One-two-three-four-five-six-seven-eight. 

Eight.

I counted and recounted again. Every time I had one more case than I did instruments. 

Ha ha! How does that happen?

The Hawthorne Book Club

One thing I love about my girls is that they don't just sit around on their bum-bums and watch TV all day. They like to create; they like to think. A few weeks ago they decided to form a little book club. They made invitations, they made membership cards, they planned every detail of how their club would be run. It was adorable.

Only a few girls were able to attend the first meeting, but that didn't discourage them in the least. Alexandra, being co-president of the club, sat in front of them and used one of Elisabeth's red xylophone mallets as a gavel to call the meeting to order. She then followed her very detailed outline as she discussed club business with the girls.

 

Each girl brought a book to share and recommend. Then they voted on the first official read of The Hawthorne Book Club. The winner: The Power of Poppy Pendle.

And then...refreshments!

 

In other news... 

Elisabeth has been very sick the past few days. Last night I had to change all her bedding - twice. I usually only see the perks to having a forever baby, but I must admit, it would be nice if she knew how to throw up in a bowl...or at least tell me when she feels like she is about to vomit. But that's okay, I still think having a forever baby makes me the luckiest.

Crossing Guard

 

 Next year Alexandra will be in the 5th grade. Did you hear that? 5th grade! Wasn't she just leaving for her first day of kindergarten?

One privilege of being a high and mighty 5th grader is crossing guard duty. Alexandra has just started her training for next year and she thinks it is pretty much the greatest thing ever. 

Of course, I had to take a lap or two around the block to snap pictures. 

And - of course - Alexandra was completely horrified. But it's my job...I am her mother.

I must say...she is the cutest little crossing guard I have ever seen.

p.s. Today would have been my grandma's 105th birthday!

A three-part piece.

Alexandra has been composing a piece of music; a three-part piece, to be exact.

A few days ago she invited me into the parlor to play it for me.

"This is guitar part."

  

 "This is the xylophone part."

  

 "This is the piano part." 

 

"Which part do you want to play?"  she asked me.

Nurse Brenda

For three years Elisabeth has been blessed to have Nurse Brenda at her side every day at school. From the bus, to physical therapy, to nap time, Brenda has been there. And not only has Brenda provided medical care...but she has loved Elisabeth; she has loved her as I love her. 

A few weeks back the time came for Brenda to retire. We were broken hearted at the news - indeed, she is irreplaceable. For weeks now Elisabeth has gone to school with substitute nurses; nurses that hardly know the fine art of snuggling like Nurse Brenda does.

So imagine the joy when Nurse Brenda stopped by our house for a visit and snuggle with Elisabeth. QE was so happy! I am quite sure she was thinking,  
"Finally! Where have you been?!"

Elisabeth was in her happy place.

And I know Brenda was too.

Thank you, Brenda! 

We are so grateful for the care that you have given our sweet girl.

From the OR to the Backyard

Yesterday morning Elisabeth had to check in at the hospital in Spokane at 6 am. She had an appointment in the OR to get molded for her new Wilmington Brace. I completely realize that it seems a bit much to go to the OR for such a basic procedure, but because the little Queen had to be perfectly still it was necessary to put her under with general anesthesia.

But by mid afternoon she sitting in the backyard and enjoying the warmth of the sunshine, the feeling of Spring in the air, and some lovin' from our very affectionate and protective Labrador, Scarlett.

 

Sisters

A few weeks ago my friend Lee Ann texted me to ask if she could borrow my girls to work on her videography skills. Now, if there is one thing I have learned, it's to always say yes when Lee Ann wants to use my girls for artistic purposes. (Lee Ann is a brilliant photographer!)

Here is what she put together:

 

Sisters from Lee Ann Norris on Vimeo. 

Thank you, Lee Ann! I absolutely love the childhood moments that you captured!

"When the dog bites"

Alexandra and one of her 'favorite things'.

 When Alexandra got in the car after school yesterday we had a conversation that went something like this:

Me: How was school?

Alexandra: Terrible! Ms. R was so mean all day. Everyone in my class was almost in tears.

Fast forward a few minutes later...

Alexandra: No one else in my class has amazing parents like I do. I am the only who's parents have had them watch 'The Sound of Music'. Nobody even knows 'My Favorite Things'. During lunch I told all the kids at my table that they should do like the song says and think about their favorite things. It totally works!

Me: So what did you think about? What are your favorite things?

Alexandra: Books, family, church, roast beef, potatoes, and libraries.

It was one of my prouder parenting moments. Not only did she call me an amazing parent because she has seen The Sound of Music, but she took a lesson from that beloved musical and applied it to her life.

And as if that wasn't enough, books were the first thing she thought of!

Be still my heart.

Two more of my favorite things.

Scoliosis Update

An x-ray of Elisabeth's spine, taken yesterday. One word: yikes!

 As I have mentioned before, Elisabeth has neuromuscular scoliosis due to her cerebral palsy. Yesterday, she and I traveled to Spokane to meet with a new surgeon about her spinal issues. The x-ray showed a shocking sight: a near 75 degree curve! A year ago in March her spine was at 48 degrees...and I thought that was bad.

The question is what to do about it. The normal course of action with scoliosis this severe is to fuse the spine - but that isn't a possibility for a few more years; we need to wait for her lungs to finish developing.

So for now she will be fitted for a Wilmington brace. We aren't sure if she will tolerate it or not...but we at least have to give it a try. With the severity of Elisabeth's scoliosis and the rate at which her spine is curving, it can begin to threaten her vital organs.

That's the scoop! Pictures of her new brace as soon as it arrives!

Lorelai's Photography Portfolio

Here's what I found when I uploaded the pictures off of Lorelai's phone: 

   

A few things to try to find in the pictures:

> Elisabeth's Rody

> Paper cranes

> Quilt from Aunt Lorraine

> Mickey Mouse

> Gumball machine

 I like her artistic vision, don't you?