Blogger Challenge....Emily's Entourage

Since I've been absolutely terrible at blogging lately, I figured what better way to rejoin my little online CF world than to partake in a CF Blogger Challenge. Two beautiful souls, also known as Piper and Emily, have come up with a wonderful way to spread the love and raise CF awareness this holiday season.

Why I fight....

Rylan was 2 weeks old and we had just returned from her 1st well baby visit. Kohen was napping and Ry was all snuggled up on my lap eating when my phone rang. I looked down and saw it was the pediatrician's office. I remember thinking how strange it was, since we had literally just left there a couple hours earlier. When I answered, I heard my pediatrician's hesitant voice and instantly knew something was wrong.

The little bits and pieces of that conversation that I remember will always haunt me. I remember my face getting hot and my voice getting loud and foreign sounding. I kept asking what exactly he meant by cystic fibrosis. Was it intellect? Was it motor skills? I kept insisting he call my husband. Barry would know how to process all of this. I clearly wasn't hearing him correctly. I kept looking down at my daughter's beautiful chubby little face and thinking to myself they're wrong, there is nothing wrong with my baby.

A week after learning Rylan had CF, I showed up on the doorstep of our local CFF office, baby carrier in hand, and offered my help. I literally rolled up my sleeves and jumped in with both feet. Over the next few weeks and months, I went from someone who had maybe heard of CF a couple of times to someone who could recite what a gram negative bacteria was and how they affected my daughter's lungs. I could (and would) talk to anyone about cystic fibrosis who had 30 seconds to listen. Heaven help anyone who happened to jump on an elevator with me and comment on how cute my baby was. "She is cute, isn't she? You would never know there is a battle being waged inside her lungs. Do you know what CF is?"

I honestly wish I was kidding.

Looking back, I now know this was my way of coping. It was my way of dealing with the stress of the unknown. Some people give themselves time to digest this info. I didn't. At the time, I couldn't. I couldn't slow down long enough to really think. I was too scared that if I did stop, I wouldn't ever be able to get going again. There is so much of her 1st year of life that is a complete blur to me. I poured so much of myself into learning about CF and advocating for her, I forgot about everything else.

Fast forward to today. I now know that Rylan is no different from anyone else. I now know that she can run and skip and jump and yell and sass back and do everything any other 3 year can do. I know that she can go to school, and dance, and gymnastics, and still manage to do 60-120 minutes of therapy every day. She can smile and love and hug and kiss and bring joy to everyone that she touches. She just happens to have cystic fibrosis. Just like she happens to have beautiful blue eyes and curly hair. Most of the time, CF is just an afterthought. And it's definitely not the 1st thing I tell people when they meet her.

So, why do I fight? I fight so Rylan can continue running and skipping and jumping and yelling and sassing back. I fight so she can continue going to dance and gymnastics and one day use those skills on the dance floor at her senior prom. I fight so she may one day be blessed with her own little blue eyed bundle of joy to love and hug and kiss. I fight so we can all forget what that dumb little number is that some refer to as "the median life expectancy of a CF'er".

I urge you to take a few minutes and watch this amazing video put together by Emily's family...

Emily's Entourage Video

And after viewing, I hope you feel compelled to participate in this challenge. No one is merely asking for a donation....we're asking you to share. Whether you blog or Tweet or Facebook, share this video and it's message anywhere you can. By sharing, you're advocating. And by advocating, you're helping Rylan and Emily and Piper and Jenny and Stacey and Josh and all the other beautiful souls out there singing, jumping, dancing, and sassing their way through CF.

Official rules:

1.) View Emily's video, and then consider making a donation of your own or 'liking' her FB page (neither is required, but both are encouraged!).

2.) Create your own blog post, FB status update, or other form of social networking tool (letter, email, whatever). In the body of the message, place a small paragraph of why YOU fight for a cure for cystic fibrosis and why this cause matters to YOU. This can be your CF story, your wish for the holidays, your version of community--whatever.

3.) Link to Emily's Entourage Website and encourage your own readers to take up the challenge.

4.) Comment over on Piper's blog post with a link to your blog....leave her a message about how you shared this vision for an automatic entry into a drawing for a very special CF/transplant-awareness prize package, including gifts from iheartguts.com, apparel, and other fun goodies!

5.) Re-post these rules on your own page.

The Story of Us....

Every little girl dreams of growing up and marrying her Prince Charming. 5 years ago today, my dream came true. I'd always imagined finding this tall, dark, and handsome guy (original, I know) and I remember standing there that day thinking, "Wow....I really found him." (Well, the dark and handsome part anyway....you win some and lose some, I guess. Tee hee.)

We started dating in November of 2002, just two months after my dad passed away. I have always known that was no coincidence. My dad knew exactly what he was doing when he sent you my way. It may have taken you 4 years and 1 baby later to figure it out, but I've always known. You were the one. You've ALWAYS been the one.

The night we got engaged will always be the most magical memory of my life....

....I don't know that any proposal could top ours. Even though I still believe you used every ounce of romance you had in you on one evening :) but, it was SO worth it. We were sitting with friends around a fire on a private white sand beach under a full moon in Costa Rica....on Valentine's Day. (Really?! Does it get any better than that?) You'd have thought by the end of the night I'd have caught on that something was up....but, I was too concerned with the thousands of hermit crabs I could hear scurrying around us in the dark. When you pulled out the ring, I remember thinking how nervous you seemed (which I'm sure was more due to the fact you were scared one of us would drop the ring in the sand because my hand shaking so bad). Then I think your nerves turned to fear when you witnessed your 1st 'ugly tear session'. I remember bawling the words YES, YES, YEESSSSS!!!!! I can only imagine what was going through your head at that moment. Thankfully, you've never told me :)

We were married on a Saturday in the late afternoon. Thankfully, you didn't view the Cornhusker loss that day as a bad omen and you decided to marry me anyway. It was a beautiful day and with all of our family and friends surrounding us, we recited our own vows. Even though I know you wrote yours only hours before the ceremony, I can never thank you enough for writing them. For me, that was the most special part of the day.

I take you, Barry, to be my husband. I promise to love & cherish you, to be supportive during Nebraska games, compliment the size of fish you caught, no matter how small it really is, & to never get mad when you choose to spend our anniversary with Nate in North Dakota, since I have been reminded over & over again how this is one of THE BEST hunting weekends of the year. I promise to love you in good times, & in bad, when life seems easy & when it seems hard, when our love is simple & when it is an effort. I will always be honest with you, kind, patient, & forgiving, but most of all I promise to be a true & loyal friend to you. I promise to always make our home a place of laughter, which may include inventing my own words to songs & singing them at the top of my lungs just to make the two of you smile. I feel so blessed that you have chosen to share your life with me, & that I get to grow old next to you. Above all, I promise to never stop laughing, & to never stop falling in love with you. I give you this ring as a symbol of my promise.....
I take you, Teresa, to be my wife. Each of us has had quite a journey in our lives so far & I feel so blessed to have found you as my partner. I promise to love & cherish you from this day forward, to be a comfort & safe haven in our families lives, to hold you close, to listen deeply when you speak (even when I have no idea what you are talking about). I promise to nourish you, to uphold you with my strength, to weigh the effects of the words that I speak & the things I do (and even the things I don't do). I promise to never take you for granted & to always give thanks for your presence in my life. I give you this ring as a symbol of my promise....

You are my best friend and I could never imagine my life with out you. You have blessed me with so many wonderful memories and given me 2.5 of the most beautiful children a mother could ask for. I love you so much, B.....cheers to 50+ more years!

Tiny Dancer....

Not sure which is money better spent in this family.....dance classes or preschool. Daddy and I have been hoping our kids have better rhythm than us (which truth be told, any rhythm is better than our rhythm), so dance classes are a necessity. But, we've also been hoping this kid is learning something in preschool....


....and apparently, basics like right and left isn't one of them :)



Ry is such a little lover, she had to give her teacher a quick squeeze before she exhibited her amazing 'bear crawl' skills.


At least she's learning (however slowly) to follow directions....she nearly toppled over trying to stay on her red X (per the teacher's instruction). Geez, I love that little squirrel.


And, of course, "Little Foot" had a front row seat to the festivities. She positioned him perfectly so he could watch her every move. I'm convinced this little guy is going to accompany her on her 1st day of high school.


She even decided to share her sticker from class with her baby sister :) We'll see how long this 'sharing' thing lasts.

CF Update.....

Last Thursday, Rylan had her big annual CF appointment. They are the ones I dread....even more than the normal 3 month ones. In addition to visits from every doctor/dietician/social worker on the team, we also get to throw blood draws and x-rays in there. Blood draws and 3 year old little girls just don't go hand in hand. BUT.....this little peanut never ceases to amaze me. She did FABULOUS. We talked about the blood draw during the car ride to the hospital, in the hopes it would 'prepare' her for what was to come. You can imagine how well THAT went over. When a child hears "They are just going to poke you really fast, so they can test some things in your blood. And you'll get STICKERS! Lots and LOTS of stickers!!"....all they hear is "Blah blah blah, POKE, blah blah blah, BLOOD". There are few things worse than hearing that sweet little voice plead with me, "Please, Mommy. I don't waaaant to."

Trust me, baby, Mommy doesn't want it either. Not any of it.

7 viles of blood, 10 seconds of tears, and 17 princess stickers later....we were at the elevators heading up to x-rays. Only 10 seconds of tears! I couldn't believe it. My advice to anyone else out there with little ones and needles.....prepare them. Don't overdo it, but tell them what's going to happen before they're sitting in the chair with a stranger and a needle in front of them (I learned my lesson last year). Have them watch. Rylan didn't start crying until that initial poke and only cried long enough to decide it wasn't so bad...which literally was moments later. I was shocked to say the least. After we got our stickers and were standing at the elevators, she looked up at me (VERY proud of herself) and said, "Mommy! They didn't even get any BLOOD on me!" My little diva princess, more concerned about getting anything yucky on her outfit than having a needle in her arm :)

We got the results from everything today.....and her throat culture showed NO PSEUDOMONAS!! It showed only a slight growth of Staph (which is normal for her) and since she's not showing any symptoms, we made the decision not to treat it. (You can see a detailed reason of why we hate pseudomonas here) Her BMI is holding steady at the 30% range, so our dietician was pleased. We would all love to see that reach 50% or higher, but as long as we're over 25%, we're on target. I've explained in previous posts that she is pancreatic sufficient, so although increased weight would be a good thing....we're not alarmed with where she is.

On to the chest x-rays...they said they want to schedule a CT within the next couple of months to get a better look at things. Apparently, the lower left lobe was not completed inflated. They went on to say that at the time of the x-ray her tummy was full of air, so this could possibly be the reason....but regardless, they want to do the CT just for good measure. They also noted there was some airway dialation in the upper right lobe, but this is common in CF'ers....so not a cause for concern. At least that's what the doctor notated. Unfortunately to me, any report other than 'Your daughter's lungs look PERFECT' is a cause for concern. Maybe not a huge concern, but until we get the CT done and have some definite answers, I'll be sending up a few extra prayers. Ok, maybe a thousand extra prayers. I'm happy that the doctors aren't concerned (hence the waiting a couple of months to retest), but this mama can't wait that long. The nurse is calling me back to set up the appointment :)

Everything I know, I learned in Kindergarten....

Last night, Kohen....age 6, mind you....and I had a rather interesting conversation. He was sitting at the kitchen table doing his homework (you know, the really hard kindergarten kind of homework), when he looked up and said, "Mom, I know what CHX spells."

I, of course, thought he was just trying to make up some random word to stir up a conversation with me to get him out of doing his homework (you know, because Mom is like the meanest thing on the planet when she tells you to do your homework right when you get off the bus, because that would like free up the entire rest of the evening to climb trees with your buddy across the street). I responded with a "Sorry, buddy. CHX doesn't spell anything."

"Oh YES it does, Mom."

"Okay, buddy. What does CHX spell."

"I don't think you want me to say it, Mom."

"Kohen, I give you permission to say whatever it is....just this one time." (Still thinking this is a ploy, which is obviously working because now the sight word list he was reading out loud is conveniently being shoved back into the folder in his backpack.)

(Lowering his voice) " Mom, it spells SEX!"

(Ok, kid. You now have my complete attention.)

"Sex?! Who taught you that word, Kohen? Where did you hear that?"

"At school."

(Trying to decide whether to laugh or cry and thinking to myself, he's in kindergarten. Do they have recess with the eighth graders??) "Ok, buddy. Do you know what that word means?"

"No.....what?"

(Phew. Dodged THAT bullet) "Oh, it's really nothing. Nothing you need to know about now anyway. Someday we can talk about it, but now probably isn't the time." (Oh, thank you Lord. The next time THIS conversation happens, Daddy better be home.)

Kohen starts laughing. A very mischievious laugh. A laugh where I'm thinking to myself, this kid is about to learn what the words "Oh shit" mean here in a minute.

"Mom. I really know what the word sex means."

(Oh shit.)

"Kohen, what does it mean?" (OH SHIT, OH SHIT, OH SHIT)

"It means someone is HOT, HOT, HOT!"

I think at this point I was sweating so profusely it wouldn't have mattered what his answer was. All I could do was smile and turn my back to him (so he couldn't see me look up to the heavens and thank God one more time).

"Yep, buddy. CHX means hot. Hot, hot, hot."

"Oh, and Mom.....I know the tooth fairy is really you and Dad."

SERIOUSLY?!!

Glitter, Sparkles, and Dinos...OH MY!

Every night when we're tucking her in to bed Rylan now asks, "Can I have another birthday tomorrow?" After a full week of birthday celebrations, I think a little certain someone has discovered she REALLY likes being in the spotlight. Given the fact that my husband can't get ready for work in the morning without being covered in glitter by the time he walks out the door....and mommy has to assist with 15 costume changes every day....I think we all could use a break from the sparkly tutu's and presents.

The dinosaur theme ended up being much more fun than I had originally thought....only because wonderfully talented people in the world have allowed their ideas to go public (aka Pinterest), so cyber stalkers such as myself can appear mildly creative :)

Dino prints leading to the door of the cabin...

I knew those countless hours spent on locker signs waaaayyyy back in the high school cheerleading days would someday pay off...

What is it with my kids and frogs???!

3 dinosaur eggs for the birthday girl's dino egg hunt...

Score!

Post hunt....checking to see what kind of critters were inside the eggs. They were hoping for baby velociraptors....unfortunately, they got watermelons :)

**Special thanks to Alison and Krystal , who's blogs gave me some amazing ideas!!!**

Happy 3rd Birthday, Baby Girl!

Rylan Rae.....my birthday girl. Mommy loves you so very much. You are such a joy to our family and to every single person you encounter. Your dance teacher the other day smiled so big when you walked through the door and said, "There's my little ray of sunshine!" Dance and gymnastics have become your favorite places in the world (and some of Mommy's, too). It's so fun to see you jumping and prancing around with your little friends (and actually following directions)....it's easy sometimes to flash forward and envision you years older giggling with your girlfriends at a sleepover. I wish sometimes I could wrap you up and keep you THIS age forever and ever. I think I've said that at every stage in your life so far....but this age is definitely my favorite. You're so full of life and love....and you are SUCH a little chatterbox. We were standing in line at the craft store today for close to 10 minutes, and you literally did not shut up the entire time. You had everyone within earshot laughing....until you decided to pass gas. LOUDLY. And, unfortunately, not just loud.....but long. I can honestly say I've never heard anything even close to that come from something so little, and most of the time so cute. It was totally reminiscent of this scene from Step Brothers....down to the little finale. You know, the one where that last high pitched toot comes just when you think it's all over.



You're lucky I love you so much.....I've never turned that shade of red before. EVER.

But, that's you....Rylan Rae. Full of piss and vinegar and every other thing imaginable. You can turn on the charm in 2 seconds flat....only to be in full fledged, alligator sized tears moments later. But, I wouldn't change any of it for the world. I absolutely LOVE your determined, honest, sassy, outgoing personality. Maybe not your moments of SHEER honesty like the one today :) but the other ones.....the ones where you cup my face in your little hands and tell me, "You're the best Mommy EVER."

I LOVE YOU MY LITTLE DINOSAUR PRINCESS!

The Big News....

In case you missed yesterday's Facebook news...Rylan (and Kohen) have a big announcement!



March 30th is the big due date, so I'm just getting past that 1st yucky trimester. Other than EXTREME exhaustion, everything has been going great! It's so nice to have the kids finally in on the big secret...I hated keeping it from them. Kohen was so excited, he told his little buddy 1st thing the next morning on the way to the bus stop and his teacher sent me an email minutes after school started saying congrats :) I'm just so happy that they are so happy. Now if I can just stay out of those cupcakes we made yesterday.....

9 Years Ago Today.....

....I woke up in Iowa City bright and early (with only a slight headache from the night before) all revved up to tailgate for the Iowa/Iowa State game. My phone rang just a few minutes past 7am and I remember looking down, seeing my parents phone number and thinking to myself as I raised the phone to my ear, "Should I say 'Hi, Mom' or 'Hi, Dad' when I answer".

I went with the later.

My brother's sad, almost unrecognizable, voice answered in return. When he first choked out the words, my initial reaction was to yell at him. Stop saying that. Stop saying those words. Let me talk to Dad.

9 years ago today, my dad passed away from a massive heart attack in his sleep. He fell asleep and never woke up. He literally fell asleep on his side, and never moved again from that position. That thought has always given me comfort. There was no pain, only peace.

But that peace left our family with a big hole. A big giant hole that only a dad/grandpa/husband can fill. I miss you, Dad. I miss hearing you say, "I never did like you" (our funny little way of saying I love you). I miss hearing you ask me when the last time was I had my oil changed. You know what I did the morning of my wedding? Bright and early, when other soon-to-be-brides would normally be off pampering themselves, I went and filled my car up with gas, had it washed, and had my oil changed. It was the only way I could have a little 'father/daughter' time on my big day.

It makes me angry still to think of big moments that we missed out on. You should have been there on my wedding day to dance that awkward dance with me. You should have been there to see my 1st home. You should have been there for the births of my babies. Birthdays. Holidays. All of it. I'm just missing you, Dad. Today and always.

Mom was just saying the other day, this girl would have you wrapped around her little finger. Pretty sure I would have to agree :) Her attitude some days may only slightly resemble someone you once knew....

Today was her 1st day of preschool....and this is what the majority of the pictures turned out like.

Those curls and that face would have worked all kinds of magic over you.

I think tonight when I'm tucking the kids into bed, I'm going to tell them "You know, I really never did like you"....just to see what they say. I'm sure I'll eventually tell them it's actually a term of endearment, and that I really do love them to pieces....but I think it'll make you smile to hear their reactions :)

Love you, Dad.

My Little Magician....

Rylan has apparently discovered magic. She just came running full speed into the kitchen yelling, "MOMMY! MOMMY! You want to see my magic trick?"

"Of course, Rylan. Show me your magic trick."

(Throwing up two little fists, which were both blatantly empty) "Pick a hand, Mommy. Which one has the magic wand in it?!"

(Pointing to the left hand) "That one. That one definitely has the magic wand in it."

(A fit of giggles) "NOPE! Come on, Mommy! Which one has the magic wand in it??!"

(Pointing to the right hand) "Ok, let's try again. That one! That one, MOST definitely, has the magic wand in it."

(Falling down on the floor laughing uncontrollably, throwing both her little empty hands up to show me) "MOMMY!! The magic wand is GONE! I told you it was magic!!"

Still reeling from laughter, she looked up at me and said "Hey! You want to see me make my sisser (sister) disappear?!"

Seeing as though she doesn't have a sisser....apparently she's a pretty decent magician :)

1st Day of Kindergarten....

I don't think I can write too much about today's big news. I'm afraid to cry, because once I start there won't be any stopping me until that little guy gets back off the bus at 3:50pm. So, we'll share the pictures instead.....

Missin' you, buddy.

Suckers for Sissy Fundraiser!!!

Saturday afternoon, Kohen held his very 1st fundraiser....in the 95 degree heat (heat index was somewhere between 105 and 110). Thankfully, we have the greatest group of friends and family, so Suckers for Sissy was still a huge hit! We sold lemonade, homemade lollipops, cookies, and other baked goods.....in the 100+ degree heat. Our little lemonade stand even raised $773.25....in the 100+ degree heat (did I mention that??).

It was so fun to look up each time a new car pulled up to see who climbed out. Even though it literally felt like my face was melting off, I couldn't stop smiling. People really came out to support us....in the 100+ degree heat.

Since we were in Dewey Park in Johnston, Kohen was only slightly concerned about having to 'work' the stand the whole time. Luckily I have some pretty fantastic nieces, so he got to spend the majority of the afternoon getting all hot and sweaty racing around with his buddies. He's already plotting planning his next fundraiser.

How could you not buy a lemonade from that face?

Pretty much sums it all up....

They LOVED helping. I think I got an elbow in my side from the little one when I tried to pour someone a glass of lemonade. Apparently, that was HER job. They got really good at collecting money and working out the change!

And, of course, no day in the life of a 6 year old boy is complete without finding a frog to torment.

She is only mildly infatuated with babies. Actually, any child even remotely smaller than she is is classified as a baby. We can't make it out of Target EVER without a "Oh, MOMMY! Look at that cuuuutttteeee baaabbbbbbyyyyy." Even if that 'baby' is walking and talking next to the grocery cart.

Cooling off.

Did I mention it was really, really hot?