So I'm selfish

So it turns out that I'm ridiculously selfish.
The last month has absolutely been a struggle. Bitty came into our lives, and I haven't been the same since. He rocked my world...
Lemme explain. Each one of my children has taught me something. Well, lots of things but it seems one major theme from each one that has forever changed me. It starts years ago with Gracie. When we found out her diagnosis, I was devastated. And God taught me about trusting him. He taught me about priorities, and that I can trust Him with the very things I treasure the most...even if I don't know what lies ahead.
Then came Seth. He taught me about patience...and not just because he was and is still a bouncing little boy. Three years for the adoption and another year after that for immigration taught me to be still and know that He is God.
But both Gracie and Seth both had something I could tangibly focus my, well, at times hostility. I knew what we were up against, whether it was a deadly disease or governments. God changed me using outside circumstances and so, so much for the better.
To be honest, I assumed that this next child would be no different. I assumed I would be struggling against legal issues or bio parents. I was wrong.
We got the call to tell us that our licensing was just about finished and in the next breath we were told about bitty. This was not the waiting game I had anticipated.
And in a whirlwind he came to our doorstep.
A cps worker showed up with paperwork and a baby and within an hour it was just us. It wasn't the storybook moment I had hoped for. He had been sobbing the whole trip over. His tiny cheeks were red, and he was covered in tears and snot. I don't think I had anticipated the big kid cry that he came with. This was not the newborn cry I had experienced with the other two, and I quickly figured out I didn't actually need a baby monitor.
Then he came down with RSV. There was more crying, from him and me. I found myself tired and frustrated and struggling to be a mother to this tiny stranger in my home.
And that's when I discovered that the thing that I was fighting against this time was, well, me. I'm fighting against my own selfish nature.
I want to have this perfect experience. I want to sleep without being yelled at. Heck I want to not be yelled at. I want him to be a snuggly baby. I want my day to go smoothly and to be this effortless, perfect mother.
So you see the problem...it's I want.
This time the big bad monster I'm fighting against for my child is the person staring back at me in the mirror.
And I'm not what this is about. This is about a tiny little one who deserves to be loved. A bitty who needs to be held even when he's squirmy and fussy. He is this precious child created by God. He's worth dying on a cross for. He needs my patience and my understanding. He needs a gentle touch and soft words from someone who loves him.
And it brings me back to my relationship to God. I am commanded to love the least of these, but I'm struggling. I think it comes down to deciding to love because He first loved me. I have to take the focus off of myself and put it on God. I have to look at this sweet baby thru God's eyes.
I think this may be the hardest lesson I've learned so far from my children, but I know that it's a blessing. I know that this tiny miracle is an answer to my prayers. And when I can see this sweet boy the way my God sees him, then I am going to be a forever changed mother of three.

And we're colonized...

So we got the call from the doc this morning that she still has psuedomonas.
Lemme try to explain what that means. She is now considered colonized, aka this bacteria has set up shop in her lungs and won't be going anywhere.
Ugh, right?!
At some point most cfers become colonized with psuedomonas. The sticky mucus in their lungs is the perfect place for this stuff to hide and killing it completely becomes next to impossible.
Now the real question. What does that mean for her future? We had a really good convo with the doc, and while I'm still heartbroken that she is colonized, we're gonna be okay. It won't make any direct changes in her med schedule. She'll continue all her oral and neb meds as usual.
Her body will establish sort of a baseline of bacteria that will be normal for her. Her Tobi should help keep it in check. However if something happens to change the status quo, (ex a cold, cigarette smoke, etc) then she could have an exacerbation. This would mean increased cough, wheezing, etc. In that case she will be doing extra antibiotics to try to get back to her normal baseline.
There is one silver lining to this. We will no longer be working to keep her from getting psuedomonas. So less of me freaking out if she doesn't let the shower run before she gets in, drinking from the water cooler at school and no longer being freaked out about chemicals being correct in swimming pools. In fact that last part about swimming pools will prob make Grace ridiculously happy.
So that's the basic explanation. Just didn't think this would fit in a status update.

What I want you to know about five

What I want you to know about yourself at five...
Oh where to begin. Well, you are all boy. You wander groggy-eyed and grumpy out of your room each morning, and within three minutes you go from my sleepy snuggle bug to full speed awesomeness. You love to run. You love to jump. You love to sing.
You're tough. I mean like wrestle a 6'5" cop kinda tough. Although to be fair, you have been known to holler for you mom when Daddy's got you pinned. Then as soon as he lets you up, you do the Angry Bird holler and run right back for more.
You love to talk. Sometimes when you get super excited your voice gets pretty high. Hence the nickname Beaker. You have so much to say about so many things so often, it just gets hard to fit it all into one breath.
You are smart. I'm fairly sure you are going to be smarter than me. Hence you shouldn't read this until you're an adult.
 You're my little gps while we're driving, and I'll be darned if you're not right most of the time. You're memory is amazing. When I can't find my keys, you're the first person I ask. You can locate anything at any time with the notable exception of your shoes. You can never find both shoes at the same time.

You believe that the world should be fair. When someone is being picked on, you have no fear I mean no.fear. of standing up for others. I've seen you do this with friends and most especially your sister. And although it has gotten you and I in some sticky situations more than once, it is one of the things about you that I am most proud of. It reminds of your Dad.
I believe that is what I would call being not only compassionate but also brave.
You're strong willed. The smart and the strong willed make for some challenging moments, but I cannot wait to see you use that as you grow up. I listen to you and think that one day no one will ever be able to stop this kid from whatever he sets his mind too.
You love. I mean wrestle people to the ground and hug them til it hurts love. Write letters to people and give away your toys to people kind of love. We were all very blessed by the abundance of Angry Birds that you kept trying to give all of us last year for Christmas. And I'm not sure what an 18-year-old needed a giant Scooby Doo pillow for, but you dang sure wanted him to have it.

You still snuggle. You'll run and play and wear yourself out and then plop down beside me. At night you still sneak into my bed to snuggle, and the truth is that I love that.
You bestest friend in the entire world and person you love the most is your sister. You sit with her while she does treatments. You've spent countless hours playing Pet Shop with her while she's hooked to machines. Every Friday night you announce that the two you will be having a sleepover in someones room. You giggle. You argue with her. And not five minutes later the two of you are giggling again. The two of you together just make my heart happy.
You're so excited to have another sibling. You're praying for a boy. The first week of school you brought home a drawing of our family. There was Dad, Mom, Grace, you and your new sibling. Also you drew Angry Birds.

You can do the best face scrunch I've ever seen. You scrunch your little eyebrows and your forehead, and it never shows up well in pictures. I giggle every time you do it. And I have to tell you that many times I've sent you to your room just so you wouldn't see me belly laugh at that face.
Oh my sweet Seth, you are just ah-mazing. You're my Bubba, my little bit, my precious baby boy. I do love you so <3

So she's cultured psuedomonas

Okay I'm going to try to compose this in a readable manner. That said, I'm a little shell shocked right now. I mean I KNEW we had beaten this psuedomonas infection. I mean her pfts were the highest they've ever been. I mean EVER been at her appt last week. I know in my head that doesn't automatically equal a negative culture, but my heart was pretty convinced.

So I'm going to try to explain this bacteria. It grows in stagnant water. So leave a bowl of water out for a day, and you have psuedomonas. Not a prob for healthy peeps.

But it does so enjoy the stickiness of cf lungs with all their mucus. In this case, my daughter's lungs...
So she cultured it once when she was two. It caused some scarring in her lungs before we detected it. We were able to stop culturing it with a round of inhaled and oral antibiotics. Important side note: trying to do swabs to detect lung infections are tricky. Being negative for a bacteria does not absolutely mean the patient doesn't have the bacteria. It simply means that the particular chunk of mucus did not have the bacteria. But she had not cultured it for nearly six years so pretty sure it was dead.

So she cultured it again a couple of months ago. Once again we did inhaled and oral antibiotics. And now she's cultured it a third time. So we will once again go after it with inhaled and oral antibiotics. But the more often she cultures, the more likely it will become colonized, aka permanently set up shop in her lungs. And right now the doc believes this will be our last attempt to completely wipe it out. If she cultures again, we just try to keep it from overrunning her lungs and causing scarring.

So what does that mean for Grace's future? Seriously, I'd like an answer to that.

The truth is we don't really know. Many, many cf patients are permanently positive for psuedomonas. Is it a good thing? Abso-friggin' positively not!
Could she have cultured worse things? Crazy, scary bite your nails yes...so much worse.

So lemme try to explain this.
Today I feel like CF is this big monster, and it's got my child by the arm. This monster is straining to pull her away and off the edge of a cliff. And I'm holding onto her other arm. I'm pulling as hard as I can. I'm throwing bottles and bottles of pills at this thing, loads of nebs, a pink Vest and every specialist I see. And most days I can keep my baby from moving. Most people don't notice that she's moved at all. But it's happening. By tiny baby steps and against all the force I can muster, CF is gaining ground.
And as wonderful as she her lung function is and as much as she's growing, I still know that the cliff is off in the horizon. And it scares me more than I could possibly put into words.

Today I know we lost some ground. So I'm going to cry. I'm going to be sad, and I'm going to be angry. I'm going to pray in between the sobs, and then tomorrow we're going to keep fighting. And I'm going to keep pulling.

What I want you to know about seven

What I want you to know about seven.
What I want you to know a about yourself at seven is that you're ridiculously funny. Not ten minutes ago you had me laughing so hard I couldn't do your nose spray. You have the most infectious giggle. Sometimes during a tickle fight you laugh so hard you can't breathe. (You totally get that from me.) You love to run. And you run better than anyone I know. You run with your curls bouncing and your arms flailing and you giggle the whole time. You run without a care in the world, and that's how you run no matter who's watching or where you are.

I want you to know that you play volleyball with the same sort of bounce. You dance, skip and gallop between positions. You literally jump for joy when you hit it over and put your tiny little hands up to your mouth in surprise. You love to play as much as you love to chat with the other girls when you're waiting to be put back in the game.
You are wonderfully girly. Last week you were asked to describe yourself in one word. You said you needed two: silly and sparkles. So you are also incredibly self aware. You love pink. You love glitter. You love stuffed animals. And of course you love not stuffed animals.

You love Chumlee. He's this gianmormous ball of fur, just all dog. I remember coming into your room and you were all pinked and glittered out. There was Chum looking all tangled and crazy. You were trying to get a tennis ball out of his drooly mouth and were ever so politely saying, "Chum please let go of the ball. You have to let go." Chum had a grip and his rear end up in the air and tail going a mile a minute.
You have a heart bigger than your curls. Every evening you want to pray before bed, and I love your heart. You pray for family, the dogs, grandparents. But then you always surprise me with the prayers for people I have never met. You pray for your friend's parents who are getting divorced. You pray for people in the midst of hurricanes. And you have a special place in your heart for people who are ill.
The other night when I asked you to bring me a book to read you brought me the Bible. I read you Psalm 139. After I was finished you said, "Mom will you please mark that one for me. I like that one."

I want you to know that you are a Daddy's girl. You ask when he's going to be home. You run to hug him, and you love to wrestle with him. You have his love of drawing and his big brown eyes. You have his 'serious face' and his sense of humor. When he's with you he goes from this big scary manly man to this tenderhearted Daddy who would do anything for you.
You're flighty. You are kind and sweet and truly every bit as forgetful as your Mom. And when you realize you've forgotten something, you are quick to say you're sorry. I love that about you. You got my love of decorating things. Your room is full of displays and little arrangements.

You adore your little brother. The two of you still have sleepovers on the weekend. I hear you giggling together on Saturday mornings while I pretend to be asleep. When he gets sick and I split the two of you up, you stand at opposite ends of the hallway to my room and wave at each other. You helped teach him how to read. You encourage him. And hug him at least twice a day.

You fight. It usually lasts all of three minutes before the two of you are running thru the house. You like to pick him up. You usually drop him, Then both of you giggle.

You like to have time to yourself. Some days after school you disappear into your room and your own little world of make believe. Sometimes I sneak into the hallway to listen. You still love your Littlest Pet Shop toys that we started buying you when you were only two. I mean they're glittery and animals, of course you still love them.
You're smart. Your report card that showed up this week was all A+'s. You love to read. Oh and you love to listen to Hank the Cowdog books on cd.
You're sensitive. You cry when I comb your beautiful hair. You're quick to hug and tell me how much you love me. You notice when someone is getting their feelings hurt, and you are quick to try to fix it.

And you are tough. Underneath all the wonderful over the top girliness you are tough. You get scared about iv's and labwork. Then you hold perfectly still and don't make a peep while the nurses work. You don't like all the pills and meds, but you do them anyway because you know that's what has to be done. Day in and day out you fight this fight and don't let it control who you are becoming.
You get frustrated with CF, but you push past it and just get on with your world of pink and love. And sometimes you cry and whisper very softly that you don't want to have CF anymore. Then I cry too.

What I want you to know about seven is that it's this amazing age. One moment you're my beautiful baby who just wants to curl up in my lap. The next you're this brave, giggly, bubbly young woman who's future I'm excited beyond words to get to see.
Happy 8th Birthday my sweet Gracie Lee Cearley.

What not to say

So we're getting into the adopting process again. (pause for girly giggles and squeals)
And to be honest we're kind of hesitant to tell people. While almost everyone will be happy and supportive, there will be of course that person who unknowingly gives us the 'my friend of my brother's  cousin's adopted, and the child was a mutant with laser eyes that killed the family dog.'

So I'm just going to address that now. Imagine that you treated your friend who just found out they were pregnant this way. I believe it would go something like this.

So you're having a baby? Are you sure that's a good idea? I know someone who wanted to have a baby once, but it didn't work out. It broke her heart. And sometimes babies grow up to be unruly. That baby could break things and have an anger problem. I hear when they're teenagers they can have behavioral issues and even act out. And sometimes babies are born with...disabilities. Do you think you can really care for a child with serious developmental or physical problems? Why would you volunteer for something like that? I'm just not sure you've really thought this thru.

Now would you say this to a pregnant woman? No, because she's hormonal. She would rip your arm off and beat you with it. Well, adoption is a pretty grueling emotional roller coaster. Adoptive parents would do the same thing, but it would put a smudge on those spotless background checks.

Also please know that if you're friend makes a declarative statement like "We're going to adopt" then that is what it is. It's declarative. It's declaring that the decision has already been made. I'm not looking for advise or for you to talk me out of it.

And because I have the option of saying yes or no to a baby, please be gentle. When I was pregnant, the baby I birthed was the baby I took home. It was sort of a no brainer. Adoption requires making a decision about whether a child belongs in your home. This is the most massive decision I've ever made. I'm searching for the Lord's will and terrified to make the wrong decision. If I trust you in the midst of this struggle, be kind. Be gentle. Don't judge. Pray and listen.

I'm looking for you to squeal with me, to daydream about snuggles and all the wonders that come with parenthood.  Honestly, I don't care if you approve. Just pretend you do.

And let me answer the most common question I get as someone who's adopted before. Yes, absolutely I love my adopted baby as much as I love the one I gave birth to! Ask me that one all you want because I will shout that from the rooftop. Adoption is ah-mazing, and God just knit him into our family like he was always there. And I love to tell the story.

That said, when you run across people who are still in the part of adoption where they don't have the child. Hmmm, maybe don't ask. Once again it'd be like asking a pregnant woman if she thinks she'll love her baby. Well of course she does. What woman would purposely get pregnant thinking she won't love the baby? Same thing goes for adoption. Adoption requires a determination I can't explain. Don't plant that seed of doubt. It's just, well, mean.

The truth is that this isn't a decision that happens by accident. There's never been an accidental adoption. It is a scary, exciting, overwhelming decision. It means loads of paperwork, prying interviews with people trying to decide if you're worthy of a child, needing lawyers, going to court dates and having no definitive end date in sight. And by the time we tell you, we are absolutely overjoyed about it!

I'm certainly not saying that you can't ask honest questions about it. There is no question that you can ask that I haven't wrestled with myself. It's a HUGE part of my life, and I want to talk about it. But second hand horror stories just bring me down. And I'm working to have another child. And I'm dang happy about it!

Adoption is a lot of work. In fact, I can't fully explain it. It's sort of like trying to explain your belly getting so big you can't see your toes. Words just don't fully express that or the pains of pregnancy. Nor do they express the joy of seeing your child's face for the first time. Adoption, it's a lot like that.

So ask all the questions you want.
Just ask yourself "How would this sound if I said it to a pregnant woman?"

Um, but never ask an adoptive mother how much she's gained. Adoption is stressful, and sometimes chocolate is the only answer.

CF Momma's bucket list

So this is really for me, to keep me motivated to keep on raising money and praying for a cure. To remind myself why I'm fighting. The little things and the big things I'm so looking forward to when CF= Cure Found.


CF Momma's bucket list:
Be late- Not like the five min late I usually am, but like we wake up 15 min before we're supposed to be somewhere and go all scrubby rolled out of bed. Right now we do treatments that mandate we get up early or we don't go at all.
Pack a regular suitcase for her- She gets her ginormous vest bag, Neb bag, freezer bag for cold meds and usually we can shove all the other prescriptions in her the pockets of her vest bag.
Ohh, ohh go thru airport security without having her Vest swabbed to see if it's a bomb and trying to explain to the security person what the heck it is.
To not be on a first name basis with the pharmacy, although ValMed is ah-mazing. Heck to get meds for her in one of those little paper bags instead of two big ol plastic grocery bags.
Go camping without needing an electrical outlet for her equipment. Maybe even more than one night somewhere, possibly in a tent.
To take out the basket that supposed to be used for bottle nipples. We've been using it for neb kits for the last seven years.
To not have a cabinet dedicated to her medications. I think I'll fill it with candy instead.
Not to keep a mental tab on how many enzymes she's had in a day so she doesn't go over. I'm really not a math fan.
Let her graze on food- Enzymes work for 30 min. If it's not eaten by then, then it doesn't get eaten. Well sometimes it does get eaten...just not by her.
Go swimming any time she wants! Right now there's always that fear of psudeomonias so we only go on months when she's on Tobi (a nebulized antibiotic.) Okay maybe not anytime, but any month she wants.
Tell her to get in the shower without wasting water before she gets in. Same thing with trying to make sure there's no psuedomonias in the shower head.
Hosing her down with a super soaker...again psuedo.
I'm gonna buy a spritz bottle to wet her hair in morning instead of making her back up to the sink and soaking both of us...again psuedo.
To go to the ER with Grace and possibly sit in the chairs instead of hiding out down the hospital hall in Darlene's office. No I take that back. I will still be hiding out in Darlene's office, but it will be because I'm a germ-a-phobe and not because of CF.
Fill out medical forms that ask for all current meds without needing a separate piece of paper.
Going to Fort Worth just for fun...with NO doctor's appointments.
Tell her to go to bed...that's it. Not follow it up with 'after you bring me your orange inhaler and take your miralax.'
To no longer have to think about whether there's fat or protein in foods.
Not having to ask her when she last pooped...although I have a feeling she will continue to announce it for years to come. Not to spend time discussing poop. I will not go into detail. You're welcome.
Making sappy videos and pleading for money for Make a Wish instead of Cystic Fibrosis.
Not having to explain Cystic Fibrosis.
Not having to see the look on my people's faces when I do explain it, either of pity or sheer confusion.
When asked if I have any prayer requests, actually having to think instead of always defaulting to Cystic Fibrosis.
No longer anxiously waiting for the day she asks if Cystic Fibrosis will kill her.
No longer anxiously waiting for the day Seth asks if Cystic Fibrosis will kill her.
To let go of the deep seeded fear that she will die from this disease, and there will be nothing I can do to save her.
But oh most of all I'm so looking forward to seeing her grow up and then grow old. To see her get married. To see her become a mother. I can't wait to see her first curly gray hair sticking straight up. I can't wait to see her get wrinkles. I can't wait until she talks about how she's no longer in her 20's, maybe even lies about her age, and oh I'm going to throw her the biggest, tackiest 40th birthday party.
I'm going to scream at the top my lungs for joy when we find a cure! There's a fairly good chance I'm going to pass out. I'm going to happy Snoopy dance, and oh I'm going to do the ugly cry!
Oh Lord, I can't wait for a cure.