Monday, November 17, 2008

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 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.


Anonymous said...

Congratulations! What a momentous day. Its amazing how much your family has accomplished in four years, and the best is yet to come :)

Kendra Lynn said...

I remember that marvelous day when they came home...its been a long journey for your girls, but they are strong. And many, many people love them and are praying for them.
I am so happy to hear of the milestones they are reaching!
Great big hugs to two of my favorite girls!


Stacey said...

I get all sappy on Ace's graduation day too. It's like it's better than his birthday.

Congratulations, girls. We dig ya here on the internet.

PS, Billie - I never realized how much they like you till that last picture!

Anonymous said...

You are one cool mom! Keep it up - you are doing such a great job.


Sarah said...

I read your whole blog over the weekend. You are such a great mom! Your girls are the cutest! I was a preemie. When I was born (2 lb 10 oz), I only had a 50% chance to survive. I'll be 30 in February. I think that integrating your girls while they are tiny is a great idea. My elementary school had kids with disabilities in class and at recess with everyone else and since I'd always known those kids, it never occured to me that they were any different than anyone else. A few just had super cool scooters. I think anything that young kids are exposed to becomes normal to them, honestly. Adults in their little lives just need to encourage them to make friends.

CP and Me said...

Thank you for this post, Billie. Hannah and Isabelle's NICU graduation day was yesterday, 3 years ago. What a small world! I too have been both amazed and in awe of their progress while at the same time sometimes still crushed with sadness over the inequities Hannah has faced and will continue to face as a result of her CP. But it's the love, support and strong sense of self that you clearly give your girls and I strive to give mine is what will ultimately make them prevail through it all.

Anonymous said...

Happy anniversary girls!! They are both so exceptional (just like their mommy), and we are blessed to share in their lives! Everyday they amaze me, I can't wait to see what they will do next. It's beautiful to watch them grow and blossom into the little people they are becomming. We luv you guys! Liz

Ellen Seidman said...

I am so amazed by what your girls have accomplished! Do you ever think, "If only the doctors could see them now?" I often think that, we were told the worst when my son had a stroke at birth. I continue to find this blog incredibly inspirational. Congratulations!

Jamie and Jill said...

Billie: You are an awesome mom with two incredible little girls. They never cease to amaze me.

And, I cannot get over the snow's stil HOT (air conditioner hot) here in AZ!

Anonymous said...

COngratulations on the fantastic "test scores"...what an amazing achievement for an amazing little girl.

Congratulations on your Nicu homecoming graduation also.

I have tears reading your beautiful post, I just know you will do everything in your power to make the world a better place. Your girls are so lucky to have you as their biggest advocate, the biggest fan and their wonderful mother...god bless you, you are amazing.

Carla (Choosing His Joy) said...

I dont remember how I found your blog but I have been reading for a few months now. Your post today was sooo great. I got all teared up in several places. I hope that they will be blessed to stay in their happy world longer than you ever imagined!

Kristin said...

Awesome post!!

I would kill for language scores like that and I have a 5 and 1/2 year old FT "baby".

I started reading your blog a few months ago and I was struck between the similarities between Eden and a friend's daughter.

Rachel Dominguez said...

You are a great Mama to two of the most wonderful girls. Just love that!

They will be great in the years to come...I just know it.


Allison said...

Yah, that was pretty beautiful. I have learned so much from your girls. I have learned so much from you. I am glad that we are friends!

Anonymous said...

Your post made me tear up !!YOU are amazing parents to those little girls. YOU will show them how to be accepted for who they are, not what some ignorant people see them as. YOU are doing everything that any parent can possibly do for their children. YOU should be ultra proud of yourselves for who Eden and Holland have turned into... !!!

Jen said...

As a speech-language pathologist who gives the CELF-P:2 and the PLS-4 pretty much every day, I am in awe of Eden.

That's it. Just in awe.

Thanks for sharing your family's story.

Anonymous said...

Happy NICU graduation day. You are definitely a family of Superheros!


Anonymous said...

You are an inspiration to all of us, Billie. Yea, yea, we love the girls, too!

Mountainmom said...

What a beautiful update! Keep up the fine work that you and John (and the others who love them) are doing. Take one day at a time. May God continue to sustain you on the hard days, but for today, you have many reasons to rejoice in their accomplishments!
Lori in VA

Unknown said...

This post gave me chills. Your girls are so beautiful and the journey they've taken has been nothing short of amazing. It's incredible to hear how much little Eden has accomplished. You and John are such great parents...those girls are so lucky to have you. Congrats to all of you on the anniversary of your family being united at home!! <3

Melissa said...

OMG...those SCORES!!! Those language scores would be phenomenal for ANY micropreemie, for ANY kiddo with spastic quad CP, but for a kiddo who is PROFOUNDLY DEAF??? C'mon...those scores are nothing short of miraculous!!!! Holy moly, are one amazing girl!!

Both of your girls have so much to show this world. We are all so much richer, so blessed to have them with us. Thank the heavens for the day they came home from the NICU!

abby said...

Everything about your entire family is awesome and exceptional in the most impressive and fabulous way possible. How's that for superlative?


Jacolyn said...

You are so blessed! You DO have exceptional girls!

Erin said...

Aw... Great blog! I just started reading it and am in awe of your girls. :) I am a twin myself (twin brother) and we were born at 31 weeks.

About the dance thing.. that made me really sad. I'm was too chicken to go to my prom, because I really had no one to go with, and I was scared no one would dance with me, so I say 'huge props' to Eden for getting out there and dancing. :)

Anonymous said...

One day they will realize how special they are. They will realize how lucky they are to have a mom like you and to part of such a loving & special family.

Anonymous said...

What an awesome post! I think you summed up the feelings of many moms that have "special" children. We wish we could love them enough to protect them from the world; but we can't. We just have to love them enough so that they know that they always have a soft place to land.

Mark said...

You and your beautiful children are an inspiration. My wife and I are currently living the NICU experience with our son. I encourage you to continue posting -

Thank you,


Anonymous said...

Thanks for sharing your story, made me weepy. Our daughter Emily will soon be 23 years old. She was born 16 weeks early, 1#7oz & 12". She spent her first 7 months in NICU.

Anonymous said...

Thank u for posting your story . I am part set of twins that were born to early 35 years ago .Me an my sister made it with help of our parents . We both still have medical struggles to . Thanks for shareings .