Monday, November 17, 2008
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!
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.
Posted by Billie at 1:44 PM