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.

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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‘Tis But A Season

To everything there is a season. This season is interesting. Our home is full of special needs equipment. Things I never thought I’d have in my home. A seven foot tall crib. A medical pole with tubing. A very large walker. Arms guards, helmets, finger guards, button covers, chewy tubes, and feeding tubes. It’s all such a part of our lives now, it doesn’t even seem weird. My thighs are consistently bruised because Carlee rams her walker into me. I can pour liquid and put in a new tubie with my eyes closed. It’s amazing that it’s all just become second nature to us.

Within this season there are changes. Because of Carlee’s needs and immune system, I’ve been staying home from church. I don’t mind missing a Sunday every now and then, but for now, I’m staying home with her. Her immune system is down. A simple sniffle in another child could turn into a horrible sinus infection for her. Any sickness could activate her virus and do further damage to her brain. So for this season, until her immune system is hiked back up, I’ll be home.

I have sermons playing on Sunday mornings. I’m still learning. I miss the family of church. I miss singing. However, I’m happy to stay here and keep her healthy. I have a home group on Monday nights. I have Ladies Bible Study on Tuesday nights. I still have my community. And after all, this is just for a season.

 

 

 

Sweet Dreams

Carlee can climb out of her crib. Most three year olds can. However, she has no sense of self preservation. She doesn’t fall with her hands out to stop her. She isn’t aware of her surroundings. And she can flip out of a crib an onto her head in three seconds flat. Seriously, she could win a gold medal at getting out of a crib in the most unsafe way possible. When she got the feeding tube, we were concerned she would pull the tube out at night, or flip over the edge. She started sleeping in a swing. We bought the biggest swing we could find. It was supposed to hold up to forty pounds. It did not. Then she started sleeping in a car seat that was angled in a wooden box, so she could still recline without tipping herself over. She slammed around so hard in there that she broke the wooden box. Popped the sides right out, nails and all. Then she started sleeping in the car seat in the crib. It was tied down so she wouldn’t tip herself over. She has gotten out of the car seat and flipped out of the crib like some sort of baby Houdini.

We looked into getting her a safe crib. The prices are insane. As if special needs parents don’t have to pay more for every single thing for their child, the beds are in the thousands of dollars. We filed with the insurance and they turned us down at every chance. Finally, since Carlee maintained her Medicaid in her adoption, Medicaid picked up the tab. After a three month wait, her bed was delivered and set up today. Here’s a before and after!

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She’s very much enjoying the space and not being strapped into a seat to sleep. In this moment I can hear her banging around in there. Her bedroom is right through our bedroom. She’s even giggling a bit. She’s safe and has a safe place to sleep and even play around in. Just for safety’s sake, I did put tights on her so hopefully, she can’t use her toes to wiggle herself out. I can’t imagine she would, but like I said, Houdini.

Here’s my girl, ready for bed. Sweet dreams little lady!

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A Peek Inside

It dawned on me that you don’t know what Carlee looks like. I put together a few photo grids to show her slow medical decline and her progress since her surgery.

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This is our girl. The 2012 pictures are when she first came to us. You can easily see the decline by the following year. Her hair was falling out. Her eyes were dim. She was in constant pain.

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These photos are from her 3rd birthday. You can see her massive hair loss and how very tiny her arms were. She always had a guard on her hands to try and keep them out of her mouth. Her OCD behavior caused her to suck her fingers until the nails fell off and the skin became macerated.

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And here we are now. Seven months after her feeding tube surgery. She has chub back on her cheeks. Her hair is coming back. Because she is getting such good nutrition, she only sucks her fingers as a soothing mechanism. Just like ordinary children. You can see the light back in her eyes.