Time Passes and Life Happens

Time passes and life happens and blogs get neglected. But, here I am typing away this morning. My sweet Carlee girl is making strides. She hasn’t been tubed fed in about two months!!! Everything she gets is by mouth, her food and her liquids. We put her on a high caloric diet. She’s become a different child. She just really enjoys her food and it makes her a happy child. She’s been eating lots of avocados, bananas, peanut butter, and whole milk yogurts. She’s begun eating small bits of ‘real’ food off our dinner plates. On Sunday we went out to a Mexican restaurant and she even crunch on some chips and didn’t choke. Her rumination has come along so nicely. She’s barely gagging anymore. We have noticed that when she does, it’s her way of saying she’s bored.

With Christmas around the corner, I’ve thankfully found a list of special needs toys on Amazon. Her catalog she gets makes me so mad. There are lots of things she’d enjoy, but they range from $200-$2000. Seriously, $95 for a Koosh Ball set in plastic. A $1.00 Koosh Ball. It’s sickening that they can charge that much. Most families can’t afford those prices and everything we buy for our children costs double or triple what it would for a typically developed child. They do this knowing we’ll have to go through insurance and they’ll get paid. It seems so unethical to me. With all that said, Amazon has been a God send. I’ve found about a dozen things, totally under $200. She’ll be a happy girl at Christmas. As long as I can wait until then.

We’ve begun co-op. I teach a preschool class and a movement class. Carlee seems to enjoy it. She’s not whining like last year. We push her near the table so she can see the kids and be involved. The kids in my class are just too sweet with her. They always talk to her when they come in, offer her things, and pick up her toys. I love their little hearts.

Carlee has 6 siblings that are younger than her. Twin brothers who are 2, twin sisters who are 1, and twin sister who are 2 months old. Her 1 year old sisters have joined our co-op and I got to meet them. It’s amazing to love on them, they are her full sisters. At a time, we thought we’d get them, but God had other plans. One of her sister, Sweetness, has some similar issues to Carlee. I’ve bonded so much with her, she reminds me of Carlee so much. She’s just the sweetest. She fell asleep on me last week and her mama said that she doesn’t do that with anyone. They are the cutest little girls and I’m so happy they found a loving home. And I’m thrilled that I get to cuddle with them once a week.

Our darling Bluebird is still with us. We don’t know how much longer, he might leave this month or not until next year. Foster Care is a tricky beast. He’s just a gem. Happy most of the time, but he can go from 0 to royally ticked off in about 2 seconds. I just love him.

The big boys are doing great. We’ve made some great progress in school. Sam is turning out to me a little math wiz. Shane is FINALLY reading for enjoyment and reading something besides Diary of a Wimpy Kid. He’s read the first Hunger Games and is starting The Maze Runner. I told him if he finishes the second Hunger Games, that I’d take him with me to see the third movie when it comes out. Jackson still prefers reading to writing. He’s a much easier kid if he’s allowed to type instead of write. I can’t figure out with me as their mother how much children aren’t devouring books. I’ve always loved to read and was hoping to pass that down to them. So far, not much luck. We’re reading The Giver together. They really like it. Jackson is really concerned what happens to people when they are ‘released’ and go ‘into the beyond’. Not looking forward to those chapters with him. They are all doing well in Scouts. Lots of camping trips and badge earnings. Matthew cannot wait to join them. He has been promoted to the preschool in Sunday School instead of the nursery. He came home and said “Jesus protects you.” He says it all the time. He doesn’t want to go into the classroom, but settles down quickly. He’s been in the nursery with two ladies since he was 2 months old. Mrs. Cindy came to community group last night and he ran up and hugged her so tightly. She’s been out because of surgery and he hasn’t seen her all summer. He calls the other lady, Lala, which is what her grandchildren call her. He’s claimed her.

We had a big day on Sunday. Johnny was ordained as a Deacon in church. It’s amazing to me that six years ago, we’d never been in church as a family, and now he’s a Deacon. I’m so proud of him.

I leave this Friday for a foster care retreat. I couldn’t be more excited. It’s in Pennsylvania. It’s so nice to be with my foster mama friends in person! We get two days together to share and rage and pray together. I cannot wait!!! Until next time, my friends, have a beautiful fall!

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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Randomness

Life moves on and so do we. Time is quickly escaping us. And here we are already in July. Carlee’s 4th birthday is at the end of the week. I cannot believe she is four already. She came to us shortly before her second birthday. Last year on her birthday, it was four days before her surgery. Seeing the pictures of that day, I can honestly say that that surgery saved her life. When I see how thin she was, how her hair had fallen out, and the life was out of her eyes, it makes me so sad. It makes me angry that my girl had to suffer so long. That foster care wouldn’t give her the quality of life she needed. That she had to languish in waiting. Until the day I got adoption papers in the mail, and three weeks later, after eighteen months of begging, she had a date. Things have been up and down over the last year with her health. However, as of now, we’re in a peak. We’re starting to work with communication devices and sign language.

We’re in the midst of summer. My girl is loving the heat. She has a hard time with cold due to her slow circulation. She’s always layered up, even indoors, even in the summer. However, once outside she flourishes. She’s running and playing and making grass angels. Two years ago, she’d scream if the grass touched her feet. She hated texture of any kind. To see her throw herself down in the grass and move her arms and legs. Well, it’s just amazing.

My big kids are doing well. We’re getting a lot of use out of the pool. Shane just got back from a week of Boy Scout camp. Jackson will head off for his last year of Cub Scout camp later this month. Sam just “flew-up” to a Bear. Matthew wants nothing more than to be a Cub Scout. His favorite thing to wear is his brother’s old scout shirts. Sweet Bluebird is learning to sign as well, but he’s well on his way to talking as well.

We’re nearly done with the school year. Just have to finish up some testing. I really dislike this time of year. Testing is so bias and shows very little of what they learned. Well, it’s what we do. And it will be over soon.

Summer and Anderson Day

Summertime summertime sum sum summertime. It’s here. Old Man Winter finally accepted defeat and the sun is shining like it means it. We’ve been busy reclaiming our backyard. A year after we moved in, the lot behind us sold and they built a house, taking down every last tree. So we moved our lives out front. The trees we planted now hide our yard a bit, so we’re moving on back. I have begged for a pool for years and this Mother’s Day, that what I got. We’ve made into our little sanctuary. We have the pool with some decking and we’re redoing the back patio. I’m loving it. The kids are outside more, everyone is happy and tired by the end of the day. It’s been a lot of work, and there’s some more to go, but we’re having a blast already!

We hit off the season with a celebration. We celebrated that one year anniversary of Carlee’s adoption. We didn’t do much on her actual adoption day, because she was so sick. This year my girl was the center of attention and even got to eat some s’mores. We had a s’mores party! Our dear friends came in droves, we had about 70 people here to love on our girl! I have to say, it was a hit!

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Prom Night

I have a friend named Rachael. A kindred sister of sorts. Until recently, I’ve never met her in real life. She’s moved to my hometown after I graduated. When I friend requested her, I honestly thought she was someone else with the last name I remembered. I’m so thankful that I made that mistake. Rachael is a mama to many. She has two sons that share my sons names. She and I are on the opposite sides of adoption, her being a loving birth mother and me being an adoptive mother. We’ve bonded over a lot. The most recent and most tragic, is the illness of her daughter. Her daughter shares many of the issues that Carlee has. However, her daughter is terminal. On August 27th, 2012, Jaeda Celeste was diagnosed with Metachromatic Leukodystrophy or MLD. MLD is degeneration in the white matter of the brain and Central Nervous System (CNS) which has a color on staining that should not be there. It genetic disorder that affects nerves, muscles, organs, and behavior. It slowly gets worse over time. And is SUCKS. Royally. (you can read more about Jaeda on her facebook page https://www.facebook.com/blessings4jaeda)

Jaeda went to a birthday party that included a dance. She decided she wanted to go to prom. Her angels came from everywhere to make this happen for her. She rode to prom in an awesome vintage car. She had her prom date. The cafeteria was set up just beautifully. And she entered in a beautiful pink prom dress. Jaeda may not make it to her real prom, this was her dream and strangers and friends and family made it happen. And it was magical. So magical, in fact, that Tinkerbell herself crowned Jaeda prom queen. In all the sadness that Rachael has to endure to watch her daughter slip away, she got this one night to see her shine and radiate in happiness. We pray and pray for a miracle for Jaeda, we don’t give in the diagnosis or what “they” say. And in the meantime, her family makes sure she has all her dreams come true. They are amazing.

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Busy Bees

Oh, how I hate to not blog. We’ve been busy busy bees around here. We have a new placement, a sweet baby boy nicknamed Bluebird. I wish I could show you his face, he’s adorable. He’s 15 months and walking and playing and generally being a toddler with the face of a baby. His doctor appointments and visitation schedule have finally settled down, but we were hopping there for awhile.

I have some great news about Carlee. However, it started out as really bad news. I got her out of bed on Thursday morning and her onesie had blood on it. I freaked out and when I touched her, I realized her feeding tube was gone. Thankfully with God’s awesome timing, my husband was home from work that day. After waiting around for the answering service to call back, we learned we’d have to take her to the Children’s Hospital for a replacement. The hospital is about an hour away plus traffic. Since her daddy was home he took her. After the waiting in the er for a temporary tube, they took her to radiation. There they tried for over an hour to put her GJ tube back in. They could not get the tubing through the lining of her stomach. They had to stop, so they put in a Mickey button and scheduled us for the next morning. Well, we’ve been working to get her to a Mickey button. After a few calls, I got in contact with her GI doctor who gave us the all clear to keep the Mickey button. This is a HUGE deal. The GJ has a base on it about 2 inches in diameter and an external tube about 9 inches long. This tube has been the bane of our existence. Carlee would pull it and tug it and chew it and squeeze it. Many mornings we awoke to her covered in the contents of her stomach because she’d open the tube in the night. As for superficial reasons, she always had to wear a gauze netting or a onesie over the tube to keep it in place. Oh, and bath time was a nightmare because she would pull on the tube or it would float. The Mickey button is about 1.5 inches long and .5 inches wide. NO TUBE. To feed her, we put the tube into the Mickey button, feed her, and remove the tube. It’s been just three days and we’ve all noticed a difference in the ease of her care. Carlee herself seems so much happier, nothing tugging on her and causing her pain. We are thrilled with this turn of events.

We recently had some family pictures done as well, sweet Bluebird had to be covered up, but you can get the gist of the ever growing family.

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