Friday, March 24, 2017

The Middle School Concert

I have never been very emotional, I'm just not built that way. But last night...I admit that I felt a bit teary! I attended the middle school orchestra concert that both Lorelai and Alexandra performed in. When I sat down and opened the program I saw a list of all the 8th graders with a note that said  
"best wishes for high school!"

 photo 2200b95f-10bd-47cc-a34b-841267fc76a3_zpsflbemniz.jpg

A wave of emotion went through me...

...and then they started the slide show.

I am becoming a sentimental sap!

Being a parent is the most amazing thing ever; the richest experience available to mankind. I have enjoyed and cherished each step along the way -  I love watching them grow up! And Alexandra...let's talk about Alexandra...she is spectacular, a parents dream. What makes me so very happy when I look at her is the fact that she is living up to her potential (which she has an abundance of!). It's not just me wanting her to be her very best, it's her wanting to be her very best. I think I may have written a blog post about that many years ago when she was just a little thing: how do you make a child want to be their best for themselves and not just to be obedient or to please others? Anyways, Alexandra strives for perfection, pushes herself, has a thirst for learning, and is self motivated. I love her.

 photo 4529e6ab-bc3e-4e84-bd36-f348f778b329_zpsfzcpfhaf.jpg 

And you should hear her play the violin! 🎻🎵

Thursday, March 23, 2017

"She is a Child"

"Your child is beautiful," 
a student said before school. 

I thanked her and told her a little bit about Elisabeth. You should have seen her eyes grow when she learned that Elisabeth would turn ten before her! 

We finished our conversation and she went on her way.

  photo IMG_20170322_083153_055_zpslavos31u.jpg

After school I stood in the hallway with Elisabeth at my side. The bell had just rung and there were a sea of students about. A different student approached me and asked about Elisabeth (she really causes her peers to wonder!). As I answered her questions the girl from the morning walked up to us.

"I decided she is a child," she declared. "I mean, you can't call her a baby, she isn't a baby, but you can't call her a kid either, because she isn't a kid. So I decided she is a child."

So that was the reasoning behind her comment in the morning, which I thought was so uniquely phrased. 

It made me smile.

"I think you're exactly right," I said. "Elisabeth is a child, that's the perfect word for her."

(Even though she will always be my baby 😊.)

Wednesday, March 22, 2017

A Story About a Super Hero

~A Super Hero~

A super hero gets to you instantly when you're in trouble.
A super hero makes you feel safe.
A super hero puts others before themselves.
A super hero is compassionate.
A super hero always knows what to do.
A super hero is fearless.

 photo ef2ba4bf-0201-418f-a98e-63f83d929ee8_zpswmzsbxon.jpg 
[Elsa comforting Elisabeth after a seizure in the car yesterday.]

~A Sister When a Seizure Strikes~

A sister gets to you instantly when a seizure strikes.
A sister makes you feel safe.
A sister puts you before herself.
A sister is compassionate.
A sister always knows what to do.
A sister is fearless.

Tuesday, March 21, 2017

A Post About Spring (and haircuts)

This past winter was the winter-iest winter I have ever experienced. Freezing temperatures, ice storms, piles and piles of snow. I think school/work ended up being cancelled ten times! There was plenty of time to hunker down at home. I read book after book, did a lot of organizing around the house, played games with the children, and enjoyed the white wonderland outside while sitting next to my warm and cozy fireplace. I heard a lot of complaints from colleagues, and friends, "I can't wait for the snow to melt" and "This winter is terrible" and "Oh no, another storm is on the way". But I loved it! It was exciting, it was was winter at its finest!

But now Spring is here, and I feel equally exhilarated by the prospect of long days, flowers, and warmth. I am ready to open windows, go out on walks, and enjoy the sound of sprinklers again.

Spring is here!

 photo image-0-02-02-1763d1beb05e442b08b52fdefbb5a03c6774d1e6342494ae1c7d8e60af055b62-V_zpsqjiduk0o.jpg

  photo fcbb33de-bd15-4b46-aa08-151b3282f505_zpslkmu5u0d.jpg  photo 44464246-61d2-4e86-925d-ec311a954460_zpsdngpv9kq.jpg  photo 25bd8da6-6225-4f78-a41f-5f83cf31c3c7_zpsiqbtmr8n.jpg  photo c01b5e0e-3f71-45b9-be72-54528f55d2e2_zpspdpvnsvo.jpg   photo image-0-02-02-f37a9e5ad3b2849d9ca720c7deb6ec7843e9e47e8ce7cab76ab9570f99c7f6eb-V_zpsjzaytetw.jpg 

Now to get Apollo a haircut...

Monday, March 20, 2017

A Story About Shoes

Let's talk shoes.

The one and only time that I remember buying Elisabeth a pair of shoes was for a benefit dinner when she was 17 months old. That was back in 2009 . (See post here.) She didn't really need shoes, but it was a fancy occasion and she had a fancy little dress and she just seemed to need a fancy pair of shoes. 

[Elisabeth and me, 2009]
But let's be honest: Elisabeth doesn't need shoes. Shoes are to protect ones feet while walking and that is certainly not something that she does. That being said, I have never quite understood why I see so many wheelchair kiddo's like Elisabeth wearing shoes. Heavens, if I could get away with not wearing shoes, I would!

Anyways, Alexandra was in need of a new pair of Converse and so on Saturday we took her to a shoe store. That's when I had the idea to put a pair on Elisabeth...just for kicks. Of course, I didn't know what size she would wear, so I eyeballed it and actually found a pair that was a good fit. Instantly, she went from looking like a baby to a big kid.

 photo 20170318_152812_zpsbjhsjilc.jpg 

She seemed a bit confused. Her legs, which she always keeps up in a criss cross position, dropped down and she kept kicking her feet. I wouldn't say she was annoyed, just not sure why her feet felt so heavy. I left them on just long enough to snap some pictures and show Donald and the girls (we all oohed and aahed). Then, I took them off and she promptly pulled her legs back up.

And that was that. 

Back to shoeless.

Friday, March 10, 2017


I set a goal this year to re-decorate the family room side table each month with a different theme.

Here is how March turned out:

 photo 20170302_143941_zpskchbigs1.jpg 
 photo 20170302_143956_zpsirmvzreq.jpg
 photo 20170302_143950_zps63vhczc2.jpg 
 photo 20170302_151044_zpsjxuh4zv3.jpg 

It has me feeling the luck of the Irish!

Thursday, March 9, 2017

Baby Mine

Elisabeth is impaired in many ways. She is cortically blind, she can't walk, she can't speak, she can't eat. The brain damage caused by hydrocephalus - and even further damage by daily seizures - has taken most all abilities from her.

Except one.


Elisabeth's hearing is perfect. I have always viewed it as a tender mercy since music is an integral part of my life. Consequently, I knew from the start that I would share the world with Elisabeth through sound.

And so I have.

When Elisabeth hears something that intrigues her, she holds very still and focuses with great intent. One of her favorite things to listen to is "Goodnight Moon" by Margaret Wise Brown. I recite it to her daily, over and over and over. It's not simply the words, but the rhythm of the prose that to her is a great comfort. Whenever a medical procedure is done - having an IV placed, for example - I whisper that story in her ear. She stays so focused on the words that she takes little notice of a needle being placed in her.

Last night I was holding her and having her listen to the song "Baby Mine" from a small Dumbo ornament. Her eyes got big and wide; you could see her thinking and processing. It melted my heart - just as it does every time.

Through sound, she sees the world.

Wednesday, March 8, 2017

Eight Months Post-Op

We all remember where Elisabeth started.

She was folded in half.


 photo IMG_20160623_133353_zps7fd2qnqy.jpg

 photo 0c86c7f9-b67d-40b8-8f73-c674f603b710_zpsaagqu5ye.jpg

And then came the spinal fusion.

Watching her endure that surgery and the long and hard recovery following was terrible. She suffered. I even wondered if it had been the right choice.

But here we are, some eight and a half months later and I can't hardly believe the difference! Not only is she straight and comfortable, but Elisabeth's quality of life has increased dramatically. She stays awake most of the day and plays by the hour. It's like she has come to life.

We recently went to a follow up appointment and this is how her spine is currently looking:

 photo IMG_20170223_164314_831_zpscqhzgzwe.jpg

You can see the rods easily, but also look carefully beyond them to her spine. It still retains roughly a 33 degree curve, but it is a night and day difference to the 95 degrees it was before.

And the more dramatic difference isn't even what we see on the inside...but what we see on the outside:

 photo image-0-02-02-1cdf323bc22ac6fc1e4c4bcd7ec5a49264c7625307f9809295be87f511f1374f-V_zpsgkg4enlp.jpg

and Happy!

Tuesday, March 7, 2017

Something From My Memory

A few weekends ago I traveled to Seattle to watch Joshua Bell perform (again!). It was in my hotel room that I noticed a piece of wall art that looked like something out of my memory:

 photo 20170220_140337_zps9mkrjdil.jpg

I stared at it for a few minutes until I was absolutely certain that it was. Then I went back through old photos on my phone until I found this:

 photo 20170220_140000_zpsfqkibzqu.png

Not only the same place, but the EXACT location within it. No wonder it felt as if I was staring at a memory... I was!

 photo IMG_20170220_140737_zpsk9qxls0z.jpg

That picture was taken at Mission San Juan Capistrano while we were vacationing last summer. It is the most beautiful place and has me absolutely craving our southern California getaway next month. With one of the coldest and snowiest winters on record for our region, I am ready for warmth and sunshine.
 photo 20151227_142246_zpssfr89gli.jpg
[Another picture I took at Mission San Juan Capistrano.]

And now, because my mind is on vacation and how much I love traveling with my family to warm and beautiful places, here are a few more from our vacation last year:
 photo 20151229_092733_zpsjhia8bgy.jpg
[Laguna Beach]
  photo 20151226_130540_zpshvwmp30e.jpg
[Aquarium of the Pacific]

 photo 20151226_153820_zpsx8hatjsf.jpg
[Long Beach]

 photo 20151230_135610_zpswrwj679e.jpg
[Disney Concert Hall]

Just a few weeks!!!! Yay!!!
Related Posts with Thumbnails