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!