Dear Today Show

Facebook changed my life.

Now, before you go and think I’m some computer crazed lady who sits at home all day online, let me explain.

My son was born with the genetic disease Cystic Fibrosis (CF). There are many obstacles that come with this disease, but one of the hardest as a parent? The isolation. People with CF are not allowed to be in contact with one another because of potential bacteria/infections that can be passed between them. So unlike those with other debilitating diseases, they can never meet face to face with someone who…just gets it.

Yes, those of us raising children with CF can meet. We can mingle. But we can never get our families together. We can never share those memories.

Thank goodness for the internet. Thank goodness for Facebook.

Without the friendships…scratch that…family that I’ve gained through the internet I would be hopping aboard the train to crazy town.

Today, the life expectancy for those living with CF is 37, and that number is continuously getting higher. That gives us hope. Seeing the two sisters on America’s Got Talent sing their hearts out? That gives us inspiration. We, as parents, want to believe that our children will beat the odds, and will live long, happy, healthy lives.

But, in the real world…that’s not always the result.

Case in point. Conner Jones.

Conner Jones passed away from Cystic Fibrosis (and Prune Belly disease) on June 24^th, 2010.

Conner was seven years old.

This is the reality of this disease. It is stealing our children. And we are joining together to say, enough is enough! We need to join forces and put our feet down. It’s 2010 and we have to make a difference, changes need to be made.

Without Facebook…without blogs…without the internet…we’d all be isolated from one another. We’d never able to share our stories. We’d be fighting this incurable disease alone. We wouldn’t be able to share advice, give tips, and support one another through times in need.

We wouldn’t even have a clue about who was out there…living in “our world.”

But the internet, specifically Facebook, has created a CF family. We’ve been able to connect. We’ve been able to share. To hope. To inspire.

To grieve.

When Conner’s parents were told that all efforts had been made, every option had been tried…and that it was time for hospice? We joined together. It may have been a virtual congregation…but there we were. Thousands of us. Holding up the Jones family in prayer.

Through her eloquently worded blog, she took us along for the ride on the twists and turns that come into play when you have to say goodbye to your child.

I sat at home, wondering. What can I do? What can I do to make a difference? I don’t have the funds to do anything extravagant. But I want to help.

So I messaged Conner’s mom Sarah and asked…”what is Conner’s favorite color?” Without hesitation she immediately wrote back, “Red. Conner’s favorite color is Red.”

And so began, “RED FOR CONNER.”

In all honesty, I thought a handful of friends would join in. I thought maybe 50 at the most. But as a few weeks went by, I realized that thousands of people were there alongside me. Thousands of people that wanted to do something, just something to make a difference….somehow.

Yes, getting a card of condolence in the mail is nice. But turning on your computer and receiving messages of THOUSANDS of people worldwide who are purposely donning the color red for this amazing, wise beyond his years, child? Turning on your television and seeing Chelsea Handler announce that she and her sidekick are wearing red for this child? Realizing that Regis and Kelly are both covered in red for this same child?

Amazing.

I’ve talked to Sarah maybe five times. And yet, I love her.

I love her family. I love my entire CF family. The thousands of them. The ones who get it. And the thousands of those out there who don’t live with CF every day, but take the time & energy to support it.

And the only reason I know that they are even out there?

Facebook.

We painted Facebook red.

And we’re not stopping until there’s a cure.

www.notsobrightandshiny.blogspot.com

Wordless Wednesday

 

New CF momma blogger! & randomness

Thanks to Flash Me! Friday I got connected with another CF momma blog…and she’s new to the blogging world!

Head on over to Jessie's site to show her, Brandon (10) and Tyler (8 with CF), some love!

(p.s. Thanks for the tip Jessie, great minds think alike because I was thinking the same thing!)

Also, several people in the last few weeks have been asking me where I got my blog design.

I can take credit for absolutely none of it!

It was all done by Carla, and amazing mother of two and all four of their family members have had some major health issues. 100% of the cost to get your page redone goes towards their family’s medical bills. I originally found her blog because her son’s name is also Gavin, but fell in love with her writing…and her design abilities! I keep meaning to get her to update mine again…but life during the summertime is just too darn busy!

But I guess that’s what happens in Minnesota, you have to squeeze all of those big events into the 3-4 months it’s warm enough to get out and about :)

I promise that I will be getting in contact with you again soon Carla!

My amazingly awesome friend Sarah, had a BEAUTIFUL baby boy named Max early this morning. But I have to wait until she officially posts some pictures of her own before I share the one she sent me…maybe I’m a bit biased but he is one of the most handsome newborn baby boys that I have ever seen!

And one final note…those of you who are facebook friends are aware that I came home Sunday to one sick little baby. A temp & a super nasty, junky cough. But with extra vest treatments, tylenol, extra naps & juice it seems to be taking care of itself…crossing my fingers it’s just some sort of virus!

Looking Back

This time last year

Angel Wings

Late last night, Conner earned his angel wings.

Please keep the Jones family in your prayers.

If you feel so inclined, please make a donation to the Cystic Fibrosis Foundation in honor of seven year old Conner Jones. This disease needs to be stopped, it’s taking too many little angels far too soon.

Breathe free little buddy.

Flash Me! Friday

This week’s flash…

Show us where you kick your feet up & relax!

Is it your living room? Rec room? Bonus room? Bedroom? Doesn’t matter, let’s see where you spend your down time!

Before we begin…I know….lots of brown on our main floor right now. BUT, there is a reason. We need a new oversized chair (the rust colored couch is new) and an area rug! And those, I want to be bright, bold & colorful!

This is the view as you walk through our entryway into our home…

And as you continue into our upstairs living area….

Keep walking…

And a final shot…

Since summer is underway we spend the majority of time in this room enjoying the fresh air. The three sets of frames to the left of the tv are photos I took on a vaca in Puerto Rico a couple of years ago. Below those, I’d like to get some sort of sofa table, with storage, or some other sort of narrow storage to put Gavin’s toys in that currently sit on the floor.

The green, “Gavin” chair was meant for Gavin to use for his Vest treatments…but he sits in it more if it’s upstairs...and often uses it as a stepstool to look out the front window.

Once Gavin is in bed, you’ll typically find either Casey or myself sprawled out on the couch (where I am right now!) and the other person snuggled up in the oversized chair watching whatever is on tv…and I often include a glass or two of wine :)

But here is where I need help…

See that green oversized chair? Needs to be replaced. After multiple spills by all members of our family, the cover for the seat cushion has been through the wash several times and no longer matches the rest of the chair.

See that blue wall? My favorite color I used in the house thus far.

See that massive area rug? Oh wait…doesn’t exist…

And here is a red pendant light that hangs above the sink in our kitchen…but because it’s all open space I consider it to be the same room…and it gives our main floor the warmest glow at night!

So here’s my issue. I want the future area rug to have a similar blue & red… which has been tough because with those colors all I can find are modern, clean lined designs. I am not someone that enjoys modern living. I like to mix & match everything to get a warm & cozy feeling. So, if I go with a bold area rug (which I’ll eventually find), what color chair do I get?

Solid? Patterned? Mixing? Matching?

I’m stumped. And frustrated. But I have to remind myself that we’ve only been here a little over a month and it will take time for it to get fully furnished & decorated…

p.s. the only reason there is not clutter all over the floor is because I went on a cleaning spree today, scrubbing floors & everything. Normally this room looks very, well… very lived in!

So…where do you kick up your feet and relax?!?

Conner Man

Please visit Conner’s site when you get the chance. He is a seven year old little boy who lives in Washington, and will be going home to Jesus soon after a strong and valiant fight against CF and Prune Belly Disease.

His parents (and two younger brothers) are living hour to hour…and minute to minute. My heart just aches.

It’s a mixture of feeling broken and peaceful. This little boy has touched the CF Community in major ways and we will all miss him terribly…but he is going home. We are just guests here, this is not really our home, we’re just here visiting. And there is peace in knowing that he’ll be up there looking down on his family.

When you see the color red…think of Conner.

‘Festing and tomorrow’s Flash!

Last night we hit up Rochesterfest for their family fun night.

See this innocent face? Clueless about the crowds & greasy foods about to come his way!

It wasn’t long before he had a stroller tray full of calorie packed fish & chips. It was delish!

I hesitated about putting him on this ride. Yes, it went super slow…but he has a tendency to just get down/jump off things without warning.

But, it was a rare moment of stillness…he was enthralled with the ride. He sat perfectly still the entire time, only moving his head to smile at his Daddy :)

We had to take a break from the crowds. A bit overwhelming for him…although from his viewpoint I can see why! All he could see was a bunch of butts in front of him!

Almost wish I had his fireman’s hat with us for this part. We stood in line for 15 minutes to stand with a fire fighter and put out a (pretend) fire. He was super interested in it from afar, but was scared of it once we got closer!

Have firemen always been 12 years old?

After this. All hell broke loose. Gavin had enough of the food, the people, and everything and anything about Rochesterfest. He had a total meltdown and it was time. to. leave.

Of course, in the car, he acted like nothing had been wrong and was back to his usual, happy self. And fully enjoyed playing with a balloon the entire way home.

After his tantrum downtown, I figured he’d be ready to crash by the time we got home. 

I know, I know. It was wishful thinking.

Luckily, the weather was gorgeous and we spent the last remaining hours of sunlight outside.

Did you notice his shirt? I take full responsibility for the US Soccer Team’s win yesterday. Gav’s outfit gave them good luck! :)

And for tomorrow’s Flash Me! Friday. The room where you, and whomever you live with, like to put your feet up, relax, and hang out.

Maybe it’s your living room? Your rec room? A bonus room? Your bedroom?

Whatever it is…give us a flash!

America’s Got Talent & CF

Two sisters, Christina & Ali, who both have Cystic Fibrosis performed on America’s Got Talent Tonight.

They come from a family of four siblings…and all four have Cystic Fibrosis.

Can’t wait to cheer them on as the contest progresses!

Wordless Wednesday

New Med & TV Show

Remember a few weeks ago when I mentioned that Gavin got prescribed an inhaler?

Well, we just got it.

I know. Ridiculous.

After spending several hours arguing with insurance companies on the phone (we have two policies and neither was willing to work with us…or each other) I finally caved and we paid the seventy dollar co pay. Yes, seventy bucks. Yikes. The other insurance company wouldn’t cover it at all…so some is better than none I guess.

But anyways, giving a toddler an inhaler isn’t as simple as just, well…giving them the inhaler. There is a special little contraption that helps him breathe in the medication (Flovent).

Obviously on one end, you “plug” in the inhaler. And the other end has a mouth piece. Once you press down on the inhaler Gavin has to breathe in five or six breaths.

Sounds simple right?!? The kid that will sit for 2 breathing treatments a day, and the kid that takes 25 pills a day should be able to master this.

HA. We’re still working on it, but he only likes to take one/two deep breaths at a time.

When enforcing the treatments of CF as a parent I think there are three levels.

• The bully – Not caring about your child’s opinions, and demanding that treatments be done on an exact schedule with no flexibility whatsoever
• The parent – Taking the time to work with your child on the best way to get treatments done correctly without it being torturous
• The friend – often caving to their “demands” and skipping treatments because they’re just not fun and eats into their play time

So, with the inhaler…like all his medications/treatments, we’re working on being the parent. Realizing that a one year old isn’t going to understand how to breathe in that new medication right away. Realizing that it could take several days, or weeks, to get him to take five/six big breaths while leaving the new contraption on his face the entire time.

Yes, we could force him and hold him down while holding the inhaler to his face. Yes, we could just skip it sometimes because he’s not a fan. But neither of those would get us anywhere.

He needs to understand that these are a necessary part of his life, and that will happen over time. Bullying will make him hate it…and us. Being a friend never teaches him that it’s a must to stay “healthy.” So there has to be some middle ground.

So for now, he’s taking one or two breaths, pushes it away & then allows us to put it back on his face for another two breaths or so. Pretty darn good if you ask me. He’s sixteen months old & already has more on his plate than most adults.

On a slightly different note, Gav man has a new favorite t.v. show to watch while he does his Vest treatments.

Little Einsteins.

The issue I had with several of the other kid shows is that they constantly asked the kids to stand up and dance along with them. That doesn’t work too well while you have a nebulizer strapped to your face while getting the goobers shaken out of you with the vest. He’d get so upset when they’d dance and he’d try while stuck sitting down.

And then I stumbled on Little Einsteins. Each episode features a classical song & famous piece of art (hello education!) And the kiddos take adventures & problem solve all over the world (more learning!) while flying their magic rocket ship. To power the ship they pat their laps, clap their hands and sing. ALL of which, Gavin can do during his treatment.

SUCCESS!

He loves to play along with the show, and it makes the time go by more quickly for both of us.

And I have to brag a little. Because of this show, he has started answering their questions….

”Is this a piccolo?”
As a harp enters the screen and Gavin shakes his head, “No.”

“Is this a piccolo?”
Gavin shakes his head, no…and says “OBOE” as an oboe appears on the screen.

“Is this a piccolo?”
Gavin throws both his hands into the air in excitement as it is a piccolo.

He did that several times in a row during the “Instrument Dinosaurs” episode. Couldn’t have been any cuter! As I told Casey this at dinner last night, I don’t think he believe me until Gavin piped in and said, “Oboe!” followed by some gibberish as he “told” Casey all about the episode.

Every time I see a child a little older than Gavin who is talking away, I can’t believe that Gavin will also be at that stage soon. But then, moments like those, make me realize that we’re gonna wake up one morning and he’ll be speaking full sentences.

But for now, we’re loving our goofy little boy that speaks gibberish, who loves to make silly faces…and seems to always have a bruise on his head.

Dear Mother Nature

It’s June. It’s summer. And it’s Minnesota.

Summer weather is why we live here.

And lately, you’ve been nothing but a huge disappointment.

It has rained almost every single day this month.

And this little boy…

would really like the chance to get off the front step to go out and play.

Bring on the sun please.

Sincerely,

Casey, Jen & Gavin.

Dad Day

Happy Dad’s Day to the best Dada around!

Whee!

Someone has mastered the slide, and it’s become a favorite adventure at our local playgrounds…

One more time? OK!

Keep your clothes on…

Sorry, no flashing today.

We had some pretty serious storms yesterday so we spent the evening/early night in the basement watching the NBA Finals on half the screen and the weather on the other half. Needless to say, the flashings of Friday were the last thing on my mind.

Today, we’ve got errands to run, including a visit to a possible wedding venue. So between last night, and the business of today, we’re taking a vacation from flashing…just for one week!

But, I do need new ideas for future Flash Me! Fridays. Would much appreciate some ideas in the comments, or via facebook!

G-man update

My friends who had children before me, constantly tell me that the changes that happen between ages one and two are phenomenal.

I have to agree. We’re not even halfway there and he does something new every single day.

Not the new things you notice in the first year. It’s more than, “oh look she/he can hold their head up a half inch higher than yesterday!”…not that those moments aren’t special, they are!…but unless you’re a parent of that child, a lot of those moments go by unnoticed.

Not so much once they get past a year of age. The changes are apparent to everyone who knows him. New words come out of his mouth everyday. He walks instead of crawls. He runs instead of walks. He reacts to your commands. He has hit that point of wanting to be just like mom/dad.

And it rocks. It really, really rocks.

Don’t get me wrong. It also gets more stressful. They learn words like, “me, no & mine” and they learn that throwing a tantrum in a store is the easiest way to get their parent to realize that they don’t want to be there…

But, it’s fun. All of a sudden you can wrestle, giggle, laugh & play right alongside him. He’s smart, can already outwit me, and loves to be the center of attention.

Remember how he called Casey, “Ne-ne?” On Tuesday, Gavin decided that nope, Casey was now going to be Dada. Cute? Yes. A little heartbreaking? Yes! I was secretly hoping that Casey would keep that nickname for some time.

We’ve lost count of how many words he knows. If he is interested in what you’re talking about, he’ll repeat nearly everything you say. If he’s not interested? Prepare to be ignored.

He’s moved out of his highchair and into a booster seat. It took me a day or two to get used to seeing him across the table, sitting like a big boy in a kitchen chair!

He’s broadened his taste, and is eating more new foods all the time. His into trying the new stuff…well, at least for now. That could change by lunchtime! But his favorites are sausage patties, hot dogs (with ketchup), chicken nuggets, green, black & red kidney beans, and oranges…and oh yea, potato chips with french onion dip!

One of my favorite traits of his? That he wakes up just like his mama. I am not one that can bounce out of bed. I don’t hit a snooze bar once, I have to hit it three times or more. And if there isn’t an alarm? I tend to lay in bed for a half hour (at least) before slowing dragging myself out from underneath the covers. And Gavin is the same exact way. He does best if you let him talk to himself & slowly wake up in the morning. If you do so, he tends to be up and ready with a smile on his face…if you wake him early, or get him right when you hear him…expect a crabby child. So, in the mornings, I often hear him and know that I have at least a half hour until he really wants to get up. And two days this week we both laid in bed until 9 a.m. HEAVEN.

He’s shy around strangers…for about five minutes, and then he’s the best of friends. He loves all the kids in our neighborhood & runs straight for them if he sees them playing outside. Especially 11 year old Morgan, who pulls him around the cul-de-sac in his wagon and comes over just to hang out with him.

He doesn’t identify animals with their names, but by their sounds. We take a dirt road to a local shopping center (yes, you read that right) and along the way there are several farms. The second we get on that road he yells, “MOO!” from the backseat, knowing he’ll see cows along the way.

He’s big into grabbing your pant’s leg, or hand to drag you around. Loves to march, march, march around the room. Has figure out that pushing “this” button on our old digital camera takes a picture. Doesn’t like being outside without a hat. Loves to find things on the ground and put them in the trash can…whether it’s garbage or not. Says hi with a wave to people walking/riding their bikes past our house and says bye with a wave as he heads off for a walk around the cul-de-sac. Calls bikes, “butts.” Something we’ve been trying hard to correct :) Has figured out that candy is good stuff. Loves watching Little Einsteins during his vest treatment.  Has a major addiction to shoes. Would be ok being outside 24/7…even in the rain. Isn’t a big fan of sharing his toys. Obsessed with dogs, big or small. Doesn’t last more than five minutes, without a snack, in a shopping cart.

And that doesn’t even sum it up. He has quite the personality. And we’re loving every minute of it!

Wordless Wednesday