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Weekend fun....

Yesterday, we took full advantage of the dreary, cold, windy crapola weather and went bowling. B and I have been together for over 8 years and this is the 1st time we'd ever gone bowling together. SO. MUCH. FUN. We had a dear friend of ours with us (who thankfully remembered her camera), whom the kids affectionately refer to as 'Tornado Jessica'. Little minds NEVER forget....she and her boyfriend were at our house long ago when we unexpectedly got some nasty weather and the tornado sirens went off. So, we set up camp in our basement and had a tornado party....Rule of Life #783, any word seems a LOT less scary when you add party to the end of it! Thanks, Tornado Jess, for documenting a fun day!!

Rocking the bowling kicks....

Someone was really excited....she even had to wear her 'lucky tights'. And, yes, she really does call them her lucky tights. Big brother was pretty excited to be the helper.

OH, the anticipation!! And the ball took a really, really loooonnnnnngg time to make it to the pins. All twenty rolls.

Proud big brother and really proud sister. This is her best version of Dora's 'We did it' dance.

You can definitely tell that we had a female friend with us....mommy is actually included in a picture! I swear, if you look back through our family photos it's like I never even existed....

I truly hope no one ever spoils the secret and tells him it's not really the lowest scorer in bowling that is the winner :)

CF update : Rylan had clinic a week and a half ago, and other than she is still a little skinny minnie, she got a clean bill of health. We got 'the dreaded call' this past week with her culture results, however this time I think the nurse had to put the phone down for a minute as I screamed loudly in her ear after she said NO PSEUDOMONAS! Thank you, GOD. The dietician wants to see us back in 6 weeks to track her weight. Since January, she's grown an inch and a half and put on less than a pound in weight....bringing her BMI back down to 22%. I struggle with this...since she is pancreatic sufficient I have a hard time loading her up with calories and fat...but on the flipside, studies show CF'ers (regardless of pancreas function) that weigh more have bigger lungs and bigger lungs function better. So, I am putting my mommy issues aside and trusting our dietician. Got to go serve up some guacamole :)

T Time.....

It's funny. When I look back through my blog posts, they rotate almost every other time between being positive and being negative. My hubby would probably say, that's not funny honey....that's what they call bi-polar. Whatever. I say it's called motherhood.

So, keeping up with that theme....here comes a happy post :) I wanted to share some details on an upcoming Rylan's Renegades fundraiser! On the 29th of this month, we are hosting a Rally for Rylan Pub Crawl. SO SUPER EXCITED. Our bus capacity is supposed to be 80....we are at 95. Oops :) We are beyond thrilled with the response we've gotten and are looking forward to making it even bigger and better next year!

Unfortunately, we can't take any more people along for the ride...but if you want to purchase a Rylan's Renegades t-shirt, send me a message and let me know! The cost is $20 and all proceeds will benefit our Great Strides team. Love, love, LOVE how they turned out! Rylan's Renegades....Outlaws fighting to cure cystic fibrosis!!!

Go-Go Gadget Arms

As a mommy, it's my job to fix the boo-boo's. You put a little disinfecting ointment on the owie, slap a Bandaid on it, give a little kiss to the forehead and off they go. But what happens when you can't fix it. When I can't fix it. Better yet, when I can't fix her. What happens when they just haven't made a Bandaid that fits this owie? You know what's enough to keep a mother awake at night?? When you know that they know how to make that Bandaid, but unfortunately they just can't afford it. The government won't give them the funding they need to research and produce that exact Bandaid. So, they rely solely on people like you and me, to go out there and raise money. Average people like you and me who know how important that damn Bandaid is. Sure, we have some preventative Bandaids that may keep their little knees from getting scratched up for a little while...but give them some time. The Bandaids will wear down, the boo-boo's will come, and the permanent scarring will eventually come, too. The permanent lung scarring that will make Rylan feel like she is breathing threw a tiny straw, all day long. These Bandaids just aren't doing the trick.

I love my daughter. I love everything about her. Including the 'imperfections'. I remember another CF mom explaining it like this....'a gift is not about the packaging, it's about what's inside.' Ry's 'packaging' may not work perfectly all of the time, even with all the preventative Bandaids we slap on her, but I can tell you what's inside that packaging is a miracle in and of itself. To elaborate on that thought even more, a gift isn't just about the packaging, or even what's inside...it's meaningfulness comes from the GIVER of the gift and the gift's intention. Rylan is a gift from God, plain and simple. And there isn't one moment of any day that I'm not beyond thankful for her. For EVERYTHING she is. I thank God every day for picking ME to be her mommy. Every. Single. Day. He gave her to me with the knowledge that I would be the exact kind of mommy she needs. Most days I don't feel deserving of that role, but every day I strive (and fail a LOT) to be just that kind of mother. The kind of mother that God wants me to be....

With all of that said....today is one of those days where I'm failing. I'm tired. Better yet, I'm exhausted. And I just want a break from it all. I want a break from living, breathing (ha, what a wonderful pun NOT intended), thinking, planning, dealing, dosing, disinfecting, fighting CF. I know with all the chaos and devastation in the world, MY problems are the last ones I should be complaining about.....but I just need to let it all roll out of my mouth for a minute. If you could hear how hard I'm smacking the keys on my laptop you would probably run for the hills. I just want ONE day off. That's it. One day. One day where I'm not consciously or SUBconsciously thinking about it all. Planning fundraisers, writing letters, posting requests on Facebook, always asking people for money....money, money, money. That's all it would take. MONEY. Something so absurd and earthly as money. The science is there for my little girl to breathe easy for the rest of her life. The money is not. That's a pretty good reason for me to just be pissed off. It's as if the magic pill is sitting right there....but my 'Go Go Gadget' arms just can't reach it.

Thank you, Petsmart.

You know what is the best (and cheapest!!) kid's entertainment? Petsmart. Seriously, these kids and I spent an hour and a half perusing the aisles today. Or, should I say, they spent an hour and a half running at full speed up and down the aisles.....only pausing long enough to tap on the glass of every fish bowl and reptile or hamster cage. I spent the entire time frantically chasing after them....trying my best to keep them both in sight, while simultaneously smiling and apologizing over my shoulder to every employee that was giving us the evil eye.

Regardless of how worn out I was by the time we left, they had so much fun. Rylan did stop long enough (but of course not long enough for me to snap a picture) to sit and watch the little dogs in doggy daycare. She literally parked her little rump on the ground and sat 'crisscross applesauce' right in front of the glass to watch them run around. The sweetest little white furball came over and reached its paw up at the exact same moment Rylan reached her chubby little paw up to the glass to say hi. Too cute for words.....


THIS is what Kohen tried to convince me we just HAD to have. His reasoning? Apparently having this in his room is all it would take for him to magically not be scared of the dark anymore!! A Chinese Water Dragon. Magic. Who knew?! Needless to say, we left the store with 2 beta fish (in separate bowls of course, I'm not that terrible of a mother), a red guy named Herbie Husker and a blue guy named 'Mine'. Bet you can't guess which one belongs to the 2.5 year old!

Pump it Up for CF!!!

Last Thursday, we held our 3rd Annual Pump it Up for Cystic Fibrosis fundraiser and, as the pictures will show, a good time was had by all. Thank you to everyone who braved the cold weather that evening and made it out! We were a little anxious to see how Rylan would fare, seeing as though this was her 1st time at a kids' play area like this....we were warned from the beginning of her CF diagnosis to forgo inflatables and play areas due to germs, etc. But, thankfully, we decided to throw caution to the wind....and let her have her cake (or cupcakes, heavy on the S) and EAT THEM TOO! Take THAT cystic fibrosis. You're basically just a royal pain in the ass....so, we're not giving you anymore of our time than necessary. HA! Or as my dad would have said.....NEENER NEENER NEENER.

She was literally BOUNCING off the chair and the party hadn't even started.....

Sporting our matching roses :)

I think she had a bit of 'sensory overload' after awhile....perhaps it was from me forcing coercing her into going down the giant slide on my lap? She found refuge in this car shortly there after...and didn't get back out for a good 15 minutes. Hey! Moms need to have fun, too! Even if it is at their kids' expense sometimes :)

All the wild monkeys.....

Mmmmmm.....greazzy pizza and 'lemonlaid'!!

And, finally, the cupcakes! Errr, should I say the tops to the cupcakes. Four cupcakes.

Definitely a child after my own heart.

When it rains....

.....it pours.

A friend sent me a Facebook message recently that said, "Don't wait for the storm to pass....learn to dance in the rain."



Well...this was me on my wedding day. Literally. But, for a girl that has no rhythm...I've gotten pretty good at dancing in the rain.

I won't go into the gory details, but these past few weeks have been a nightmare.....to say the least. As a mom, I've gotten pretty good at 'juggling'. I juggle appointments, meetings, phone calls, emotions, medications, treatments. You name it, I toss that ball up into the air and juggle it. All these stupid balls are going round and round up in the air. I had gotten so good at it, that sometimes one little ball would drop and softly land on the ground...and I wouldn't even notice it was gone. I would continue juggling the rest like nothing had happened. These past few weeks, literally every other day, a ball would drop. Loudly. KERPLUNK. Oh! There goes a ball! KERPLUNK!! Oh, no! There goes another ball. And so on...until I was left standing here, staring blankly into space surrounded by these stupid balls on the ground.

Kohen's cold turned into a severe sinus infection, and Rylan's double ear infection turned into RSV. I have never been so scared in my life. I have never seen a child cough like she coughed, bracing herself before the cough and gasping for air after the cough. I took her into the CF clinic on Valentine's Day where they took both a throat culture (thank heavens the results from that came back normal) and did a nasal swab to check for the RSV. Bingo. Within 15 minutes the nurse told me that the nasty cough culprit was RSV.

(We have a new nurse at our clinic and I absolutley ADORE her. This was her 1st 'official' culture all by herself, and she was so concerned that Rylan was going to be scared of her forever, she put together a little mini bouquet of flowers and made her a bracelet. Needless to say, Rylan now has a babydoll named after this nurse. I'm sure she's going to expect the same royal treatment at every visit.)

And now we'll address the giant elephant in the room. Valentine's Day? You were at the doctor, you say? Weren't you supposed to be at the realtor's office signing closing documents on your old house?? Hmph. I went to church last weekend and the entire sermon was about not judging others and rather than using words to break people down, use words to build them up. So, I will not fill the rest of this post with words that I so badly want to say. Words that would make the dirtiest of sailors blush....instead, I will continue dancing in the rain.