My baby lady turned four on Sunday. There was no big party, no princess gowns, no bounce house, and no glitter. But she’s here. Long after ‘they’ said she wouldn’t be. She ate her cupcake and enjoyed it, even after ‘they’ said she’d never eat again. She locked eyes with everyone, after ‘they’ said she might never do that. She ripped open her presents (with the help of her brother) and looked at them all and picked her favorite. Even though ‘they’ said she might never play with toys appropriately. She smiled, even though ‘they’ said she might not because of the brain damage. She’s going to show up every single one of ‘them’. My baby girl has improved so much in the last year she’s doesn’t even resemble the child she was. Does she do things that a four year old does? No, of course not. Does she do things a six month old does? Not anymore, she’s moved on. She was stuck so long at 0-3 months development. She’s progressed to about 9-12 months. It’s progress and it’s slow and you may not see it, but we do. And she does. So we spend Sunday celebrating our beautiful daughter. Our purple in a sea of blue. Our living breathing miracle. Our 4 year old.
I teach a preschool co-op class of 3-4 year olds. Carlee comes to class with me and sits in her high chair near the tables. She does not talk or participate. I was worried about the other children, how they’d react to her. It’s been amazing watching them this year. They don’t ever question why she’s different. I’m not sure they even notice. She is older than most of them, and they know that. Yet, they talk to her every morning. They pick up her toys when the fall. They treat her like the other kids. They notice when she laughs and laughs with her. They rub her head if she falls asleep. It’s incredible to watch. I’m not sure when children change, when picking on someone is funny, but these kids, oh their hearts. I pray they don’t change, that they keep their hearts full of love as they grow up.
Carlee is amazing. She’s doing so well lately. We had her seizure medicine changed again. They seem under control for now. That’s always the case, until her body is used to the medicine and then we up the dose again.
Her verbalization is really coming along. She’s started forced breathing “ha ha ha”. It’s the first step into forcing words out of her. Her daddy has been working with her every night doing repetitive sounds, she really responds to him. We’ve heard “babababababa” and “ahahahahah” She’s seemingly responding to him, to repeat back what he’s saying. There still aren’t any actual words, but it seems very close. She opens her mouth and even mouths words, but the actual sound hasn’t come out yet. I’m pretty sure she’s just going to blow us all away one day and spit out a long sentence.
We’re dreaming of Spring here in Virginia. This winter has been long, gray, dark, and cold. We’ve gotten more snow this winter than in the last five years put together. We’re on the coast, and we are not used to this. We’ve had a few beautiful days, perfect days, and then the next day it snows. It’s surreal. 67 outside with winter storm warnings. I’m praying that winter is on the way out. And soon. Carlee on the other hand, she’s rocking some spring colors!
We volunteer at our church’s Clothes Closet each month. It’s a great mission the women have started. In 1998 they took the tiny old part of our church and turned it into small clothing store. Expect you don’t pay for anything. People can come once a month and get free clothes, housewares, shoes, etc. It’s been really nice getting to know some of the people who come every month.
The big boys take Matthew to the nursery and watch him so I can work. Carlee stays with me. She used to sit in her stroller then in her car seat. Today, I had the bright idea to take her high chair. She was secure and up high so she could see everyone. She was having a great time. She was laughing at people (and trying to eat their strings). She was making eye contact. I kept getting the same comment over and over. “She’s so good.”
One particular lady said it quite a few times. She rubbed her head and said how pretty she was. And then she said “That’s good parenting right there, for her to sit there so quietly and well behaved.” I smiled and said “thank you.” My heart tore open! Her sitting there silently has absolutely nothing to do with my parenting skills. She can’t talk. She doesn’t talk. She does sit there quietly. She seems well behaved. I know this woman meant no harm, she didn’t know. But, I wish I could get my 3 year old to tell me “no” “I don’t want to” or anything else of a defiant nature. Anything at all.
She is a sweet girl. I know I am blessed by her good nature. I know some children who could never sit there for two hours and be happy about it. I’m very thankful she’s a content child. I don’t mean to sound ungrateful. But I wish for words instead of silence.
We’ve heard Carlee’s voice just one time. The first night she was here, my husband said “say dada” and she did. That was the first and last time we’ve ever heard her true voice. Many nights a week, she talks in my dreams. She doesn’t carry on the conversations of a typical three and a half year old. Last night she was just baby babbling, like a six month old would. She turned and looked at me and said “hi mama”, I woke up with tears on my cheeks.
We are helping Carlee find her voice. The hope from the specialists is that her brain will ‘rewire’ itself and she can speak again. We don’t know if that will ever happen. We can’t wait around for that moment either. She’s made big strides in communicating since she had the feeding tube put in. She can sign ‘more’ in her own way, but we know what she means. She has a happy head dance when she’s excited about something. She makes a very specific sound when she sees us getting her cup of juice ready. She’s turning to voices more. She definitely knows when daddy comes home. It’s another specific sound. We’re working on a communication board for meal times. Pictures of her food so she can point and tell us what she wants. She’s signed ‘eat’ a few times.
My eldest son signs ‘hug’ for her multiple times a day before he hugs her, he’s desperate for her to sign it to him. As much as I want her to sign her needs to us, I really want to see her ask him for a hug!
For a little girl with no words, she sure has a lot to say!