Let me tell you about Friday

Lemme tell you about Friday. Trust me. You're gonna wanna read this.
Well first some background. When Gracie and Seth hug me I tell them it makes me heart feel happy.
It's this warm fuzzy feeling that I only get when my children hug me. You know that first day of summer when you're laying outside, you close your eyes and then you take that first big deep breath that's full of sunshine? Kinda of like that only so much better. I just can't really put that into words, but oh it's just beyond amazing. It's, well, quite possibly my fav thing about being a mom.
Anyway, on Friday Bitty had a doc appointment. He was passing the time playing in my lap. We were babbling and blowing raspberries at each other. And then it happened.
He looked up at me with those big hazel eyes and ridiculously long eyelashes, smiled with his tiny four teeth, and then put his head on my chest. He sighed softly and tucked his arms up under his body...
And my heart was so very happy.
This warm feeling ran over me. I wrapped my arms around him, grinned that silly mommy grin, and teared up like a big ol girl.
And that's it. In a random exam room, on an uneventful day with no one else there, no drama to speak of, he became my child.

And now life feels almost normal. 

Like I was driving to school, and I realized it felt totally normal to have three kids with me. 

Grace was next to Bitty and babbling away at him.

I'm getting up in the mornings and not feeling overwhelmed by the task of getting everyone fed and out the door in time. Seth gets himself dressed and then runs to play with Bitty.

In the afternoons, I find myself with an hour to myself to zone out with random tv shows during naptime.

Bitty will not only giggle, but the kid has some serious dance moves. In particular he loves him some boy bands. 

He's started signing, and even more amazing I understand it. 

He will play right next to me and then sneak off to the office to pull out all the puzzle pieces. That's right he will wander off without me to play.

The older kids offer to help with the dishes and to help feed Bitty.

In the evening Bitty gets fussy, but only for an hour. I can put him in the playpen. He throws a fit for a few minutes and then remembers how many toys are in there. And the fussiness doesn't make me cringe anymore. It's just a normal evening with a normal family that has a normal baby.

As I type this the big kids are eating dinner while Bitty plays. 

In fact, I can mostly categorize today as borderline uneventful.

Don't get me wrong. It's still scary to not know the future for Bitty and us. Things still aren't clear. There's still fear about the unknown with Bitty, but I can say unequivocally that I have three children. Three smart, funny and so loved children...And they so make my heart happy.

Drama

dra·ma:

 [drah-muh,dram-uh ]any situation or series of events having vivid, emotional,conflicting, or striking interest or results:
So drama...
I'm so not a fan.
Confrontation makes me queasy. Yeah and then I do a goofy nervous laugh.
And I think I've spent far too many years trying to avoid it.
I mean we've certainly had our share of dramatic moments over the years, but it's never something I've accepted as the norm.
My thoughts have always been to just push past the dramatic situation to get to the good stuff. Drama always had a negative tone in my opinion. I wanted life to be easy, effortless and in all honesty terribly boring.
But lately I'm rethinking that.
I find that we've been thrown into a whirlwind with Bitty, and dude that is def some drama. Drama that I never wanted. Drama that I don't feel like we did anything to cause. Drama that to be honest I've been bitter about having to deal with.
I mean I read my Bible. I go to church. I pray. I love Jesus.
So shouldn't I be drama free at some point?
When I write that out, it sounds even more crazy.
I mean I read my Bible. What Bible character ever had a drama free life?
Seriously?
Issac was put on an altar.
David was run out of his country.
Moses was a baby left in a river.
Job was, well, that's some drama.
Lazarus died and then came back.
Jesus sweat blood.
And here I am with my queasy pity party about my very cush life.
Jesus had drama. I mean serious for real drama.
He knew the drama was coming. He didn't run. He didn't hide from it. He decided that it was worth it. He decided that I was worth it...
How humbling is that?!
So that's the difference. Jesus loved me so much that he didn't care about the drama it took to save me.
It was never about the drama. It was always about love.
Love means being passionate. Love means picking up a cross. Love means there will be drama.
Drama with a purpose.
Jesus' is passionate about saving people, about fighting for people. And I'm a Jesus follower. His passions are my passions.
I'm working to accept that drama isn't a bad thing when it's for something worth being dramatic about. I'm working to trust God and know that He's got this. That if He brings drama into my life then I can trust Him with it.
And to see what lies behind the drama, love.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails. 1 Corinthians 13:4-8

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.