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.

Why yes I did dye him blue

So first off I should put a disclaimer. I did not dye my dog using people dye. I used dye specifically for dogs. Also around his eyes are black so I did not have to dye right up to his eyes, and the pink part of his nose is still pink.

Now as to why exactly did I dye my dog....um, because it's awesome!
Okay it totally is, but there is actually something a lil more to it than that. I'm not sure I actually realized it until this morning when I was out jogging. (Subtle insert of my new found ability to jog...short, very short distances.)
This is not the first time I dyed a dog. Years and years ago I had a little pug/doxin mix. I just realized I have no clue how to spell doxin. I know that's not it, but ....Anyway, so his name was D-O-G. I called him D for short. And I absolutely adored this dog. He was baby, and I've always said he was my favorite dog I've ever owned. He was black with this lil white patch on his chest. Well, I was in my 'No Doubt/Gwen Stefani'  phase and dyed the front half of my hair pink. like super duper hot pink (another awesome moment.) There was some dye left over, and like I said D had this white patch...

My sweet baby D. Yes that's the sailor costume on the left.

And that is first time I ever dyed a dog.
It was like a symbol that he was mine. That I loved this little dog so much I wanted him to look just like me.
Wayne will tell you that this dye job was why D threw himself in front of a car. That is not true. D threw himself in front of a car after I dressed him up in a sailor outfit. (Side note: I will not be dressing Spangler in a sailor outfit. The Christmas doggie outfits were bought by my sister.)
Fast forward a 'few' years later. Both my kids have started school. I have all this extra gooshy energy with no outlet. Then there's this big ol great dane who spends most of his day just laying in my kitchen. He talks to me in the morning, fusses at me when he's thirsty and thumps his big 'ol tail if I even glance his direction. And it seems I've become very attached.
So I decided to dye him blue. Actually it was supposed to be turquoise, but apparently a great dane requires more than one bottle to get a dark turquoise.
It was pretty dang easy. Washed him, rubbed it in, waited 15 min and rinsed him. He just sat around and let me and Dana blue him up.
Every time I see my big blue baby it makes me grin from ear to ear. Seriously you can't be blue if your dog is literally blue. I think I more love this big ol' snuggly pup as much as I did tiny lil D. And this is my slightly warped way of showing it.
I dyed my dog blue because I just heart him <3

Thank you isn't enough

So this morning I'm looking on Snapfish at thank you cards to send out for donors. I'm scrolling thru all the designs and just none of them seems right. Maybe it's just too much to put in a note card.
And since this won't fit in a card I'm hoping I can fit at least part of it in this blog. Here goes...
Every time I check my CF Great Strides page and see you've donated, I tear up.
I get that big goofy, girly grin with watery eyes and know that we are so blessed.
Some days this fight can feel so lonely, tiresome and oh do I get tired of trying to find creative ways to ask for donations.
Every donation, whether big or small, reminds me that I am not alone. That my friends and family are in this with me. That they believe this is not only a fight worth fighting, but also a fight worth winning.

She is my rainbow and my heart.

Oh we're going to make cards, and I will be sending them out. But I can't find a way to fit a knock you to the floor kinda hug in a card. A sniffly, sobbing thank you on a paper.


For where your treasure is, there your heart will be also.
Matthew 6:20-22
Thank you for believing my daughter's life is a treasure.

Shout outs:
Cara & Thayne Harrison thank you!
Garrett Ledgerwood thank you!
Granny and Grandpa thank you!
Aunt Colleen and Uncle Roy thank you!
Stacy Barros thank you!
Mary Nell thank you!
Rosta William thank you!
Diana Gann thank you!
Terri Cox thank you!
Slade Jones thank you!
Beth Cook thank you!
Bruce and Amy Fielder thank you!
Cynthia Wentworth thank you!

Mom and Dad thank you!

Oh it's a vent

So this post is mostly for me. Just gotta get it out there.
So here goes.
I'm feeling pretty exhausted by the whole CF raising money thing. We've been doing it for eight years now and for some reason this year is just getting to me.
And for the life of me I can't pinpoint as to why it's this year that's bugging me so much. We're getting so close, I mean stupid close to a cure. I should be more motivated than ever. I should be on fire this year...and yet I'm not.
I have these ah-mazing supportive friends, and no lie people have absolutely astounded me with their generosity this year. I've teared up with every donation. So much love from my friends.
Maybe it was the video this year. I knew for a good month ahead of time exactly what I wanted to do. And I came up with every excuse, I mean every excuse I could think of to put it off. I can't even bring myself to watch the dang thing again. It makes me nauseous to post it on fb. And you know how I love to post everything on fb.
Maybe I'm just tired of my daughter having to deal with all this. She's doing so ah-mazing, but I know with this disease it's all just holding off the inevitable. And to see the finish line off in the distance...
If we can just keep her healthy until the cure...
She could have a normal life. That's a lot of pressure.
What if she gets sick? What if there's more scarring? What then?
I'm so tired of asking people for money. Knowing that people choose to not watch the video or that they watch it and the don't help.
I know there are countless reasons, some so legitimate. It still stings. It's still discouraging.
She knows we're getting close. Yesterday she sat with me and quizzed me up one side and down the other about it. I'm trying to give her the information, give her hope and yet still protect her from the what if's.
What if this drug doesn't get thru? What if we're back at square one with no end in sight?
For the last seven years I've been praying for this. I thought I gave this to God a long time ago. And now, right here at the end I'm desperately trying to take it back.
As if my worrying can force this drug thru any faster.
Oh Lord, I need your peace. I need your reassurance that you really do have this. I need you to help me pry my fingers off this disease that I have no control over. I need to trust you fully with my precious baby girl. Oh Lord, help me.

So you've been asked to join my team :)

The 411 on walking.

So here's the deal on the Great Strides Walk.
First of all, thank you guys for all your support. You guys just rock.
So I keep asking for people to join my team. I know what your thinking. "Um, what exactly does that mean?"
Good question. (And not just cuz I wrote it ;)
You click on the link to my page. You scroll down and see a button that says 'Join my team.'
Click that.
There will be a screen where it has you register. Fill in your info.
Now what's the benefit to joining my team over donating.
Another excellent question ;)
Well you will have your own donation page that you can send out and that means not only can you donate, but you can help raise more funds from your contacts.
Your Aunt Tilly (I couldn't come up with another generic name) will be much more likely to donate on your page than mine. Plus you can do most of the work just emailing your page or posting a link to it on facebook from your own home in your pjs.

People can donate directly on your page. You don't have to keep up with pledge sheets or collect money.
If you'd like to do more, there's also links from your CF Great Strides page with ideas of how to raise more money. Things like doing jeans day at work or wear a hat day. (Personally I do wear sweatpants day at my house as least once a week ;)
And on the day of the walk you get to come to MediPark, have some free breakfast and walk. I have to say I also love getting to see all the other teams and their cfers. Its such a blessing to get to see all the kids that you're helping. Just watch out for the duck 'droppings' at the park.
Sound like too much work? No prob. I'll be happy to come to your house to set up your page for you.
So if you'd like to come become a team Hope member, what's stopping you?
Get started at http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7755&idUser=104366