Christmas Spirit

I love Christmas. I really do. For the most part, I am one of those cheesy moms who starts playing Christmas music just after Thanksgiving and proceeds to hum, whistle, and sing Christmas songs under my breath for the next two months. I love my big ole' artificial tree with the popcorn strings, multicolored lights, homemade ornaments, and giant star. I check the mail eagerly for the weeks leading up to Christmas and LOVE reading all of the Christmas letters and hanging up the pictures we receive. We hang stockings, make wish lists, and talk for weeks about what the girls will ask Santa for when they see him.

This year my holiday spirit has been tested. It started with the tree. I got it up in stages. The first day I put it up, the next day I put on the lights and star, and a few days later Eden helped me put the ornaments on. She was totally adorable in her pony walker, tongue poking out in concentration, studiously putting all of the unbreakables on the bottom two layers of branches. She commented on each ornament, saying "is this one special too Mom?", and telling Holland "not right now Holland, I'm helping Mom decoration the tree."

Well, we literally got the last ornament on when I heard two loud cracks and the tree starting falling! We ended up having to undecorate the tree and take it down. I had to buy a new tree stand, and about a week later I finally managed to get the tree back up and redecorated. Now don't get me wrong, I do love the finished product, but having to go through the whole process of actually getting it up TWICE was not my idea of fun.

The second test of my holiday spirit was during our visit with Santa. The girls had been prepping for weeks and knew exactly what they wanted to ask for. Holland was asking for "The Mickey Racetrack" and Eden was asking for "Aurora and the Horse." They were both very excited. As I was helping Eden onto Santa's lap I mentioned that she might need a little support sitting. Santa was cool with that. Then he looks at Holland and asks what she wants for Christmas, and she replies "The Mickey Racetrack." Then, still looking at Holland, he asks "And what does your sister want for Christmas?"

Say what?

So, in swoops Mom to say, "Eden, tell Santa what you want for Christmas." And Eden of course replies, "Aurora and the Horse." Perfect. Then Santa asks, "Does she has muscular dystrophy?" And I say, "No, she has cerebral palsy." And Santa nods and replies, "Oh, yes, I used to work with the CPs at one of my jobs."

Are you kidding me?

The girls smiled at the camera for the first time this year, we thanked Santa, and went on our merry way. In fact, Santa asked the photographer to throw in a few extra pictures for us because he really liked the girls, so we ended up with about double the pics for the same price. It was sweet really, and I know that Santa meant no harm.

But come on. Santa! Of all people, Santa should know better. First, my daughter is NOT a "CP". She is a little girl. And second, come on dude. Please look at her and address her directly. Especially when asking the most important question of the year!

Super Silly

A real post coming soon... In the meantime, if this doesn't make you smile, nothing will!

Wordless Wednesday

Cousins!

Well, it was almost wordless, but I do want to say Happy Birthday to my dear friend Jess. I love you!

Thankful

Hair Thursday (Poll added!)

I got my hair cut.

I'm trying to decide if I should go shorter. Maybe something like this:


Also trying to decide if the color should go lighter (blonde highlights, as usual), or maybe darker for something different.

What do you think?

Wordless Wednesday

This Day

On THIS DAY, four years ago, my little girls came home to be with their family.

I am feeling really sappy and sentimental this year, for whatever reason. Maybe it's because I just came from their preschool, where they are celebrating their birthday with crowns and a special story at group time. I took in our poster from the fashion show, and a picture of them from their homecoming day. I told the class Holland and Eden's (very abridged) story about why today is a special day for us. The girls took the picture and poster around the circle to show the children. I don't usually get emotional about the story anymore, but today it felt different and I actually found myself tearing up. Maybe it is because of what Holland and Eden BEING in PRESCHOOL represents to me. It's been such a long journey, filled with such complex emotions...an intricate intermingling of intense heartache and supreme joy.

Sometimes it feels like my heart might burst for the love and pride that I feel for them, while still at other times my heart breaks for what we have been through, and what pain and grief and sorrow we have yet to endure.

My heart nearly burst with pride at Eden's IEP last Friday, when her speech teacher was going over the results of Eden's most recent language evaluation.

On the CELF-P she had a receptive language score of 91 (within normal limits), and an expressive language score of 85 (within normal limits), for a total language score of 87 (within normal limits). On the PLS-4 she had an auditory comprehension score of 98 (within normal limits), and an expressive communication score of 86 (within normal limits), for a total language score of 91 (within normal limits).

Let me tell you...I know a LOT about test scores. I know these scores are at the lower end of the "normal" range. I know that kids with scores in the 80s often have a difficult time in school. I also know that Eden is exceptional.

Can you imagine? A child who is PROFOUNDLY deaf...who has spastic quadriplegic cerebral palsy. To score "within normal limits" on a language test standardized on "typical" kids her ACTUAL AGE of 4 years 3 months! That's HUGE!

Also huge is the improvement she has made in the last 7 months when she was previously evaluated. In every language area we have seen her scores go up between 10 to 15 points. We're talkin' one whole STANDARD DEVIATION worth of improvement in seven months!

She's awesome.

On the flip side, my heart nearly broke at the Princess and Superhero dance that we attended this weekend. The kids were playing a game called Switch, where they danced with a partner until the DJ called "switch" and they all traded partners. Holland was still warming up to the idea of dancing, but Eden rushed right onto the dance floor in her pony walker with a smile on her face and her hands out, ready to join in. But nobody would be her partner. It made me so, so sad.

I don't fault the other kids. It's not necessarily that they don't want to dance with her, they just don't know what to do. I was so appreciative that John got out there to dance with her, and that a couple of other moms brought their kids over saying they needed a partner. I was also grateful to Spiderman who grabbed one of her handlebars to pull her along on the "train", and to Belle, who recognized that she is Eden's hero and spent a lot of time dancing with her and encouraging the other girls to dance with them as well.

Holland and Eden still don't really notice their differences. They are just happy to be here, and to be a part of the action. But someday they will notice. They will notice that they are different, and that their differences make people uncomfortable. They will learn that not everyone is kind, and not everyone loves them and wants them around. They will learn that there is still so much discrimination in the world.

But for now we will focus on THEIR world. A world where everyone loves them. Where they are the life of the party. Where people are kind, and caring, and helpful. A world where I am a Superhero, who can heal their boo-boos with a kiss, who can make everything fun, and can protect them from all of the bad in the world. If only it could last forever.

Happy NICU graduation day girls!

I'll continue to do my best to make this world a happy place for you.

A Few of My Favorite Things

"Raindrops on roses and whiskers on kittens, bright copper kettles and warm woolen mittens..."

I love that song. It came on the radio while I was driving this evening and was a gentle reminder that it's time to get my butt in gear to start my shopping!

I have a couple of really inspired gift ideas for all of you.

First, I recently got another really fabulous personalized necklace from Lisa Leonard. Lisa is mom to two adorable little boys, one who has special needs, and she also happens to make the most beautiful jewelry. My first necklace designed by her was the open circle, and my new necklace is the teenie tiny initials. I LOVE it! Actually I love so many of her pieces that it's hard to decide what to buy. Make sure you check out her jewelry designs, as well as her beautiful family, photos, and blog. She is such a talented person and I really admire her! You can save 10% off your next piece of Lisa's handmade jewelry by entering the code "tellafriend" at checkout. Make sure you tell her I sent you:)


My next awesome gift idea is a super-duper everybody-wins buy. My friend Greta has designed a truly incredible 2009 Calendar titled Heroes of Hope, which features babies and children who spent time at the Neonatal Intensive Care Unit where Holland and Eden spent the first 110 days of their lives. The girls make an appearance in the calendar, which will be debuting on Thursday evening at the Fashion Show, and 100% of the proceeds from the calendar will go to the NICU Family Advisory Board to provide support to NICU families. Greta is mom to triplets, and somehow still manages to be an amazing photographer, as well as super stylish and sassy. I am so impressed with the quality of her work. Anyone who would like to make a contribution to the NICU Family Advisory should purchase one of these calendars. They are truly fabulous!