Today, I rage.

She came to me a broken little 20 month old. After over two years of healing and hoping and helping. She’s still broken. She still cries out from the pain of her seizures. She still chokes on her own puke that she brings up without knowing she can stop it. She has a hole in her stomach to receive food. Her ears don’t hear correctly. She deals with a disease that’s meant to be given to adults who have unprotected sex. Not to an innocent child. She still doesn’t speak. She still falls and stumbles and bruises her head. She still can’t play without mouthing the toy. She has zero self care goals met.

Most days, I can deal with this. Most days I see all progress she’s made and I know she’s a miracle. Most days, I focus on the good. Today is not that day. Today is the day I cry and I rage. I rage at the fact that NONE of this had to happen. She could have been a completely normal child. Today is the day I rage. She’s aging out of nursery, but we surely can’t put her in children’s church. We keep her home. Or only keep her in Sunday School. People offer to keep her for me and it’s wonderful. But she’s my daughter and I understand what caring for her entails. She’s too much when there’s a class full of kids. She needs one on one attention. And I don’t want to hear murmuring about the “four year old still in the nursery”.

Today I rage. She has a cousin just four months older than her and they can’t play together. I get so insanely jealous seeing pictures of my niece playing dolls and tea party. Will Carlee ever do that? I flipped through a catalog of American Dolls and I would give anything to take to get one. For her to understand what they are. For her to wait impatiently to get her first one. Hell, I’d buy her every damn doll in that place if she knew. Forget Dave Ramsey, I’d bust out a credit card and get her whatever she wanted. If she knew.

Today, I rage. I get online and all my sad feelings spew. All my anger. Later today, I’ll feel guilty for posting this, for feeling this way. Right now, I’m too pissed to feel guilty. Today, I watched her have seizure after seizure. See her cry. See her suck her fingers until they bleed, because that’s all the can comfort her. I watch her on her tip toes because her ankle muscles have tighten to much for her to walk flat. Can we get into a doctor? Nope. They won’t let me have the casting that was recommended by her therapist who knows her. No, they want to do braces, as if she could understand that. “Maybe surgery when she’s eight” because why make her life any easier than it needs to be. We’ll just let her lose all range so you can cut later. What’s the big deal with another surgery?

Today, I rage. I rage at her birth mother. The child who did this to her. I could forgive, I could, she was young, much too young. But she’s gone on to have FOUR more children since Carlee’s birth. And she’s pregnant with two more. They all suffer, they all have issues. Some more than others. Thankfully, they are being cared for and loved on and healed in their new homes. She just keeps doing this. She just keeps stealing childhoods from her own children. I can pray and hope for a normal life for Carlee. For dolls and and dress up and prom and graduation and a wedding. If I listen to the doctors. She’ll have none of that stuff. Of course, I believe in a God much wiser than those doctors. But, today, I’m drowning in their diagnoses. And it’s all her fault. The pain she’s caused the child she gave birth too. It’s her fault. She packed her bags at eighteen and LEFT. She abandoned her child. She didn’t want to deal with the medical mess she made. So she just went on to have two more. And then two more. And now two more. 7 kids in 4 years. My beautiful friend can’t get pregnant. She gets to have seven kids. At least she doesn’t get to raise any of them.

Did you miss the part where SHE WALKED OUT. In all the time that I’ve had Carlee, since April of 2012, she’s never seen her. Never even tried. She messaged me last Christmas “Will I ever be able to see her again? I love seeing the pictures” I had mercy for her. I set up a visit at her family’s home. So she could see the daughter she walked out on. She said she was coming. She didn’t. No call, no text, just never showed up. That was the last time I heard from her.

Do I feel badly blasting her? No, not right now. I pray the day will come when Carlee will understand what a treasure she is, that she was adopted in love, that she will ask me about her. I’ll be kinder then. I wouldn’t want to hurt her with the harsh truth. I already have to deal with that one day with Matthew. But today, I vent. I want her to feel what Carlee has to live with. I want her understand what she’s doing to these babies. But, she won’t. And I can’t make her. So I write here. I scream here. I cry here. I rage here.

Then I wipe off my face and go back into my world with a smile. I’d give anything to make her whole. Even if that meant I’d never met her. I’d do it. But she isn’t whole and we were given the responsibility and the joy of raising her. That makes me heart smile.

Kids and Differences, Voice, Spring

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!

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She’s So Good

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.

In My Dreams

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!