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.

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My 4 Year Old

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. 10385285_10152290244228882_8688481818152742140_n

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My family. Carlee’s namesake and my best friend came to visit.

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Mama Said There’d Be Days Like This….

Oh, what a day!

Is than an understatement? Am I being dramatic? Who knows. What I do know is that I have been through the emotional wringer today. Carlee’s setbacks became very apparent today, the rumination, it is like a PTSD trigger. Okay, not to make light of PTSD by any means, but that year of vomit, it took it’s toll on me and seeing her start again, it’s making me a little crazy. I don’t want to see her regress. She’s been doing so well. Because she’s been doing so well she’s been used to having her cup and food. Without it, she’s a very angry non-verbal three and a half year old. Then that brings up bitter feelings toward her birth mother that I’ve tried really hard to rid my soul of. But knowing she’s walking around and living her life while she sentenced her daughter, my daughter, to a life of suffering, it just makes my blood boil. It makes me want to punch something. And cry.

There were a few high points today. My kids at preschool dyed eggs and painted with bubble wrap and playing in shaving cream. They were adorable. Bluebird fell asleep in the Ergo and I got to watch his sweet face dream. I had two really good talks with moms on the playground about life and foster care and special needs.

It was just one of those days. High and low and lower. My foster friends are getting babies left and right. I’m happy for them, I’m happy for me. But when you really stop to think about it, it’s damn depressing. All these children being removed. All these lives interrupted. I love that Bluebird is here, he’s a joy, but the ‘why’ of why he’s here is sad. And I don’t wish sad on any child. It’s the paradox of foster care. We make smiley faces and say “congratulations” when someone gets a placement. Congratulations on what? “Hey, there was a child abused, but yay, you got a baby.” I do it. We all do it. I’m glad these babies and kids have a safe place to go, but God, I wish it wasn’t needed. That parents could just parent without the neglect and the abuse. That they could break what seems to be an endless cycle. Maybe we’re the ones to break that cycle. Maybe that’s why we says congratulations. We could be the ones to stop the abuse. To change their futures. To change their family history. Or maybe I’m being dramatic.

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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God’s Handiwork

“Fear not, for I have redeemed you, I have called you by name; you are Mine.” Isaiah 43:1

To be honest, most days I feel like I have no idea what I’m doing. I get up and I don’t know how Carlee’s day will go. Will there be seizures? Will she fall? Will she be happy? Every morning is a mystery. She’s usually quite happy getting out of bed. Sometime between her morning diaper and getting into high chair, she settles into her mood for the day. For someone who likes their day planned to the minute, this is nerve wracking.

Then there’s the day itself. Did she get enough one on one? Did I do the compressions on both sides? Did she get enough calories? How many seizures did she have today? Did we get through all our school work? Was I mom enough for my other four children? Was I wife enough for my husband? Did I spend one minute alone with myself and God?

I don’t always have the answers when I lay down. I question myself into the night. Carlee wasn’t born to me. I didn’t have any time to prepare for what was coming. I have to believe in God’s handiwork, that He crafted me to be her mother, their mother. I don’t know why my babies had to go through what they did to make it to me, but they did, they’re mine. And I want to be enough for them all. I don’t know why Carlee has to suffer. I can’t put it in a cliche, look at all the lives she touching. I’d rather her be pain free and have a normal childhood then touching strangers lives. Even touching my life. She’s taught me more about doctors and specialist and medicine and therapies than I ever thought I know. I’d trade all the knowledge for seizure free days and words from her lips. But there is truth in it. I have more compassion for other parents than I ever used to. I see the world differently. My kids see the world differently. I have more patience than I did my first ten years of parenting. I’ve met amazing mothers, amazing families. Yet, I’d give it all away for her to be pain free.

So I ramble. I write. I research. I vent to online groups. I pray for a cure. I stress. I have anxiety attacks. Then I dust myself off. Do a work out. Doodle a sketch. Read a book. I try to sleep and I wake up and do it all over again. Never knowing what that day will bring.

I trust in this:

“For we are God’s handiwork, created in Christ Jesus, to do good works which God prepared in advance for us to do.” Ephesians 2:10

I don’t know what He saw in me, in my family. But He prepared us long before we knew she was coming. Long before we knew anything about special needs. He prepared us. prepared our way. He knows the ending. And it’s good.

 

The Good

I’ve spent a lot of time giving Carlee’s back story. I’ve told you the bad, the ugly, and I think it’s time for the good. What can she do?

Carlee can walk for up to a minute without falling. This is a huge progression from her worst which was about ten seconds. Carlee can eat baby food and soft foods. She used to bring up everything in her system. Carlee now lives without heartburn 24 hours a day. Carlee can sign more. She can communicate that she wants more food or more of an activity. Carlee sleeps through the night, she did this before she got her new bed. She can hold a toy for up to thirty seconds. She never held a toy for more than two before. She holds and mouths plastic toys. She used to only touch things that were soft and chewable. Carlee can drink from a sippy cup while holding it for the entire time. This is a huge progression from when she would sip and throw, sip and throw, until all her cups were broken and the floor was a mess. Carlee can keep shoes on her feet. She used to hate it. She can go outside barefoot. This would have never happened a year ago, the outside scared her. Carlee can recognize a half dozen faces. She used to have no ‘stranger danger’ and would go up to anyone and cuddle, while cute, not exactly safe. She now has a sense of who(m) she likes. She notices when mommy or daddy or big brother come into a room, and will make noise when we leave. Carlee can tell us when she doesn’t like something, in her own way, versus a standard cry. Carlee can be in a non-vacuumed room and not choke. She used to put every little bit of every little thing she would find in her mouth.

She’s growing. She’s putting on weight. She’s getting taller. Her hair is filling in. Her eyes have light in them. She’s our fighter and out survivor.

Here’s a glimpse of what Carlee can do now:

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In the Middle of the Night

Carlee’s seizures are showing themselves tonight. She wakes up in tears. That wakes me up. There is nothing to be done. There is no help I can give. I can only stroke her head and rub her cheeks until they pass. I do have one thing on my side, on her side. The name of Jesus. When I’m so upset, so angry, that my baby girl has to suffer, I can’t even pray. But, I can use His name. It’s the only thing I cling to, in the middle of the night.

We talked about healing today. I talked about it with a fellow foster mother. The topic came up later in my evening Bible study class. God has the power to heal. Anyone. There’s a fine line between what He can do and His willingness to do it. It sounds harsh. If He can heal her, why doesn’t he? I don’t know. In the waiting, in the darkness, I can pray for her. I can beg on her behalf. I can hope for a miracle (look at what He’s already done). My friend said she told her daughter “Jesus will heal you. It just might not be on this Earth”. I agree. Jesus will heal my girl. She’ll one day run and laugh and talk until she’s blue in the face. I pray I see it. I pray it’s here on Earth. Here in this world. But, I know it might not be. I can’t explain why. If I could explain God, what kind of God would that be, if a measly human could understand all His way?

So in the mean time, I call on His name. When I can’t form a prayer. When my hands shake in fear and anger for my daughter. I call on His name. I still pray for her miracle. I will never stop praying for her miracle. But, I know He has a plan for her, and I can’t wait to see what it is.