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.
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.
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!
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.
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.
May is National Foster Care Month. It’s the time of the year that we all (more than usual) promote foster care. We share our kids’ stories, we give tips on how you can get can involved, we share resources, and we ask for help.
This year, my friend over at http://tamlynn75random.blogspot.com/ Errr, I can’t get it to work, but anyway. She’s doing a “First Night” drive for foster parents and the children. Often, in many many stories, these children come with nothing except the clothes on their backs. Sometimes they are taken in the middle of the night. Sometimes they are removed from school. The majority of the time, they come with very very little. So foster parents have to run out at 1:15am and grab diapers, toothpaste, underwear, socks, and other various items. The goal of the “First Night” drive is to halt the middle of the night run.
Example: A social worker gets a call. They start going down their list of potential homes. Mr and Mrs. Doe say ‘yes’ to the call for an 8 year old boy. Mere hours later at 2 in the morning, the doorbell rings. Instead of showing up with nothing, the boy has a small bag in his hand. The bag contains a toothbrush, toothpaste, underwear, socks, a pair of pajamas, a clean outfit, and a small stuffed animal. The social worker was able to grab these items off a shelf before leaving to pick up the boy. The boy has a few pieces of comfort and the parents can wait until the next day to go out for the rest of his needs.
So that’s my goal. For the month of May, I will be collecting items to make First Night bags. To make a transition for a scared child just a little bit easier, knowing they have clean clothes for the next day, and to save foster parents the stress of a middle of the night run. In the next day or two, I hope to have a paypal donate button and I’ll be collecting in person as well. Thank you for sharing and considering helping the foster children that exist all around us. You’re showing them that someone cares and that they matter.
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.