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

So I haven't really talked about it much on fb. I know. There's something I haven't posted on fb? But yeah sometimes I just can't fit it all in a few lines with my cell phone. So here goes...

(Pause for girly tear up) Miss Lisa will no longer be Gracie's nurse. Ugh (pause again for girly tear up.) I know. We've had a LOT of nurses to go with various doctors over the years. All of whom we love, but Miss Lisa is different.

When she first showed up on our doorstep, I didn't know what to expect. I knew we were getting a nurse to help out getting her morning treatments done. I was supa excited to get to spend my mornings making my princesses Nutella sandwiches for lunch.

But we didn't get a nurse. Well, we didn't get just a nurse. She's become a part of the family. She's the one I call when I don't know what to do. What to do about an extended belly, a stomach bug, the flu and most importantly when Grace needs new boots. Yeah, sparkly boots all her.

She has spent countless early mornings with Grace and her hoards of Barbies. She loves my daughter when she's at full adorableness. She loves my daughter when she's too sick to get out of bed. And she loves my daughter when she's angry at her Cystic Fibrosis and is just done with her treatments.

She nominated Grace for Make-A-Wish. Took her for pedicures and tacos. She even braved Mr. Gatti's. She's the care of a nurse with the heart of a grandma, only much younger. She's been a blessing beyond words for our family.

And for me she's been a friend, a mentor and the kind of mother I hope to one day be. She's my first friend who really knew what it was to be the mother of a child with medical issues. She's the one I turned to when I didn't know about handling schools, 'medical necessities,' and when I just got overwhelmed.

I just want to say thank you. Thank you for everything I've listed, and everything I didn't. We love you, Miss Lisa !

Ode to Wayne

Giant is because, well you're kinda giant.
Ninja is for the awesome sound effects you make while tearing up that pomegranate on fruit ninja.
Polos is for your deep love of polo shirts and our epic battle about whether they're half as awesome as you believe.
Protector is because you protect me. In a dark alley or ooocky people, I know you've got my back, and you're always scarier than them.
Brak is for introducing me to humor that I'm now only mildly embarrassed to admit I enjoy.
Green mamba is because your love of all snakes and all those freaky animal shows you've made me watch. P.S. I will never visit Austrailia.
Karaoke is for the song at Jason and Christina's wedding, and the rendition of Living on a Prayer with me at LegoLand.
Lookin' so good is for catching you singing that song to yourself shirtless in the mirror.
Disneyworld is for the most ah-mazing trip evah with the most ah-mazing man.
Psychotic nerve is for my sciatic nerve that you so aptly renamed when I was prego.
Candle is for making candles with me in my apartment. And the moment I realized I like liked you.
Weird is for so many reasons...all of which I love.
Hot Wheels is for your love of collecting things that only cost a dollar. And the battle to keep me and kids from opening the packages.
Bacon, does this really need any explanation?
Words is for the games you play with me.
Scrubs is for the years you worked at BSA and wore those awesome scrubs with the matching hair net.
Lamborghini is for the many times you've dragged me to the Lamborghini dealership and the look of joy on your face when you see one.
Wrestling is for the years we wrestled and the way your giants hands could never get a good grip on my tiny wrists.
Buffet is for the pounds and pounds of fried rice we've scarfed over the years.
MJ is for Michael Jackson dance throw downs we've had...and the one or two you've almost won.
Walrus is for the silverware you've put in your mouth to look like a Walrus. Seth and Grace now do it too.
Go Kart is for the go kart races you can't ever win because you're so much bigger than me.
Nike is for the shoes you love so much.
Pirate is for getting made over into a pirate even if you were the only adult in there. And for real you made a supa sexy pirate.
Camaro is for you being so twitterpated that you let me drive your camaro even though I didn't really know how to drive a stick.
Incredible Hulk is for the Halloween you dressed up. The Hulk and Rainbow Brite made quite the awesome couple.
Pic smile is for your pic smile. And how sweet you are to try not to do it.
Monkey...well that's not blog appropriate.
Christian is my fav word to describe you!
Lassie is because you are my Lassiter.
Gracie is for the wonderful Dad that you are. Because I heart watching my big, tough scary guy become this sweet, gently teddy bear with our lil princess.
Chi is for when you made me think you bought me the Walmart flat iron instead of the Chi. And after letting me stew awhile, you told me the real one was in the closet.
Til Death is for being snuggled up in bed and listening to your belly laugh at Brad Garrett.
Funny is because you are hands down the funniest person I've ever known.
Bob Ross is for your artistic side and your love of the man with the fro.
Guns is for the when you stained your AK 47 purple...and then stripped it to make it blue.
Fishing is for when you came bolting into my Aunt Colleen's house with big ol cat fish grinning from ear to ear.
Peacock is for the many hours spent watching Will Ferrell movies.
Wayland is for when we went to the same concert at Wayland when we'd never met. And when I said I wonder if we saw each other. And you said no, I'd have remembered you.
Supra is for the year I bought the remote control Supra. And you loved it so much that you actually took it out of the box and drove it down the sidewalk.
Carrots...also not blog appropriate.
Batman is for watching you steer Seth towards your fav super hero and convincing him that Batman is way more awesome than Spiderman.
Uhhhh is for all the times you say uhhhh. And how over the years I've really come to love the way you say uhhhh.
Jack is for Jack In the Box. I admit its awesome.
Ferrari is for the other cars you do so adore.
Boot is for boot to the head.
Chicago is for when we were trying to get home with Seth. The stewardess kicked us off the plane because they thought he was too young to fly. And then the applause from the other passengers when we got to get back on.
Awesome is because you truly are just so awesome! I can't talk about you with the word awesome.
Gizmo is for your soft, sentimental side that saved your original Gizmo all these years.
Toes is for that freaky alien thing you do with your toes.
Food is for all the crazy things you've gotten me to try over the years. Most noteable is the eggs in my orange juice.

Seth is for the way I adore watching you with your son. Watching you teach him what it means to be a all boy.
Snuggly is because you my head fits so perfectly in that lil crook between your shoulder and you chest. Technically that's prob your armpit. So just above that.
Loyal is for the loyalty I've seen you show your friends and those you love over the years.
Newsboys is for the band that seems to pop up in our lives. At the wedding, Grace's first ultrasound and the countless road trips.
HB is because you write that on everyone's fb wall, and it makes you giggle every time I mention it.
Cookies is for when you told me my ginormous cookies were better than your Mom's. It was the moment I realized I was actually a pretty decent cook.
BBall is not only for your love of basketball and the Mavs, but also for your determination to wear bball shorts no matter the season...even is you have to wear long john's underneath.
Blizzard is for all the blizzards you've gotten for me over the last decade.
Stache is for the awesome stache you grew...and then shaved off.
Blue and Black is for the ongoing debate about if navy and black match...they do not.
And lastly true love is because you truly are my true love. You are my best friend, my knight in shining armor, my partner, and the most amazing husband I could ever ask for. Here's to the next decade with you.
I love you, Wayne Cearley <3