February 21, 2008, I became a mommy. I got to meet the most precious little boy this world have ever known. Colin Patrick Fish. He owns my heart. He's taught me things about love and life I never imagined.

It's awesome to see how much he's grown. He's been so excited about "turning four" for weeks now! My favorite phrase was on his birthday morning when he said "mommy, now that I'm four, can I do things like grown ups do?"

He feels so big now. I guess he IS so big now considering how far we've come, and how much he has grown!

For his birthday celebration, we spent the day at Experimentarium - sort of a science museum for kids. He loved it - and we didn't even get around to everything, so we will be back!

Then we had a pizza party & a special cake he'd been asking for over a month: an airplane with a face! He was happy. SO happy. Shaking in his seat, smile plastered on his face happy... I love it!

My absolute favorite thing about this town is the quiet nights with a clear sky. I love walking down the path, bundled up in the chilly night air and looking up into the sky to see hundreds of stars and constellations I only wish I knew the names for.

Tonight I went out to the store after getting the kids in bed, and it was one of those nights. Hardly another person out, the store was nearly empty, and it was just me and my thoughts for about an hour. 

Peaceful.

And nothing is more inviting after a long, cold walk than coming back to my warm home with bright candles burning by the window.

I love this place.

Today was one of those days where you have certain expectations that, after a while, you just throw out the window and go with the flow - trying to retain as much sanity as possible. We survived. We're back home now, the kids are relatively rested, fed and pleasant enough for me to steal a few moments to relax before jumping into the nightly routine and the next few hours of regular craziness.

It snowed again yesterday, quite a bit yet icier than before. I was getting the kids ready to go to our (rescheduled) monthly CF dr appointment this morning, as I got DJ's text informing me that the paths were not very good. Awesome - nothing like the anticipation of a hard-to-maneuver stroller in the chilly morning to get your excited about the day ahead...

But things were looking up as we got to the station just in time to catch an earlier train than I had planned, which meant I had time to run to the store for some snacks AND get to the hospital in time for the kids to play a bit before the appointment time.  The only downside on our journey today was when I got off the bus and my regular path through the greenspace to the hospital was completely covered in snow. It's out of the way to follow the sidewalk, so I decided to attempt the path. NOT the best idea, but we made it eventually, and my arms are thankful for a bit of a workout!

It was a good visit. We'll know within a week or so if the cultures show any new or recurrent bacteria. We've recently treated both kids for pseudemonas, and Colin for staph, so I am VERY anxious to see the results. The dr we saw today was very good and informative. He shared a bit of info with me about the system they follow at their CF center, including the reality that the kids will almost always be treated with some type of medicine, about 10 out of the 12 months annually. However, their center has the highest percentage of patients at age 18 who do NOT show chronic pseudemonas - and that's huge. Pseudemonas is a bad word in the CF world. Bad, bad, bad. Being able to keep it at bay - even if it means "over treatment"... I'm on board with that.

We also saw the dietician today. Things are looking good. We're getting the hang of the gluten-free lifestyle, AND for the first time in months Colin and Katelyn both gained weight - a whole kilo! Colin's up to 17.5kg (38.5lb) and Kate is at 14.9kg (32.8lb). It basically means what we are doing is working, and to keep it up.

When we finally finished at the hospital. the kids were cranky and tired, but the sun was shining and I actually felt a bit warm. So I told them to sleep in the stroller and I walked the 2km back to the train station instead of taking the bus. I love this walk, because I go right by the lakes in Nørrebro. For weeks I've seen bodies of water covered in sheets of ice and snow, but today was the first time (in my life) I saw people walking on the water. I felt so nervous for them! Kids were running back-and-forth and sliding on the lines of ice they'd marked out of the snow, and the thing I think will freak you all out... there were people walking with their strollers too!

I'm glad my kids were sleeping so they didn't ask ME to go out there. Maybe someday... but I haven't tried it yet! After all, I'm still adjusting to all of the snow on LAND! It was exciting though that the snow this weekend was finally good enough for building out GIANT frosty the snowman! The kids are so happy. :)

Let me tell you something about Cystic Fibrosis. It's a terrible disease that robs us of our time, our health, and of opportunities that "normal" people may be able to grab hold of.

But it makes us strong.
fierce.
determined.
relentless.
and grateful.

Today I read an article about a man names Joe O'Donnell who lost his 12-year old son to CF back in 1986.

But instead of becoming angry and bitter for his loss - he fueled his passion to irradiate Cystic Fibrosis into the funding of research that has resulted in the latest "miracle drug", Kalydeco. 

Read the article: 
http://www.boston.com/news/local/massachusetts/articles/2012/02/09/joeys_long_legacy/?page=full

I gotta be honest... I was bawling my eyes out after just a few paragraphs.

I hate CF, and I hate seeing my children struggle when they don't even know yet that their life is different than other kids. But I can't be bitter - because CF is forming my children into the most incredible, fearless and accepting children they could ever become.

I laugh nearly everyday when they race downstairs for "treatment time" and fight over who gets to go first.

I smile every time another parent watches my two and four year old swallow 4 big pills without hesitation.

Colin and Katelyn are remarkable children, and I think Cystic Fibrosis makes me take a step back and truly appreciate the wonderful opportunity I have been given...

To raise these kids.
To share our story with you.
To fight for the future generations.

My favorite quote from the article was a quote from C. Richard Mattingly, chief operating officer of the Cystic Fibrosis Foundation, who said:

“He could have turned away and said he hates this disease, but he didn’t. He led us. He wasn’t working to save Joey’s life. He was working for the others that still had a chance.’’

And that's what it's all about. I love that so many of you donate money every year in honor of Colin and Katelyn. I hope that there are drugs created in their lifetime that truly are miracles for their body and heal them of the pain caused from Cystic Fibrosis. But even if it doesn't happen for them any time soon, we will keep fighting CF and working for a cure. Because it's not just about us. 

There are kids out there fighting a battle far worse than anything we have ever experienced. There are adults sitting in the hospital waiting for a lung transplant because CF has destroyed the lungs they were born with. There are CF patients breathing their last breaths and saying goodbyes to the people they love, because this disease is killing them. It breaks my heart the pain others experience from CF. I try NOT to think about the issues CF could cause my own children, and I choose to stay focused on the here and now, grateful for the health we do have today. But we have to keep fighting. and fundraising. because we are on the verge of something special. remarkable. and we're doing it for the memory of Joey. We're doing it for Colin and Katelyn. We're doing it for my friend's children who also struggle with CF every day. We're doing it for the people we will never meet, for the kids who are not yet born. For anyone touched with CF in any way. We fight for you.

Make a donation to the CF Foundation: www.cff.org/Great_Strides/GoFightingFish

I am very excited to announce that Art Fish is back in action. I have had the opportunity to do a logo for a friend last week, and a potential new job or two is on the horizon... PLUS I have signed up for a class next week that will give me some basic info on how to be "official" as a business in Denmark. (aka, how to pay the danish taxes!)

SO... take a look at my new & improved website: artfishdesign.com

Some changes you'll see are that I am only focusing on the design. When I take a step back and am truly honest with myself, graphic design is what I love. Cakes are fun... but I'd rather do it for family and friends than attempt to run a business. Maybe someday... but for now I think I'll put my time and energy where my passion lies.

I also revamped my portfolio page. It's blog-style, so you can view everything or narrow the search by category. I have posted a handful of my favorite projects over the last few years. Take a look and leave comments on the designs you like the most. Feedback is encouraged! 


And be sure to LIKE my Facebook page too! >Facebook.com/artfishdesign

Today I made the kids pancakes shaped like mickey mouse. I do this every day, because it's a breakfast food Colin actually eats - and I'm in the process of doing everything possible to get the kid to eat. Anyway, today for no apparent reason, when I called him to breakfast and he realized I made pancakes (again), he says...

"Oh, thank you, thank you, thank you mommy! I LOVE my mickey mouse pancakes." 
Then he came up and said "I want to give you a hug!!!"

So sweet.

Then a few minutes later he comes back up and says... 
"Mommy I want to give you a BIG BEAR HUG because I am so glad you made me pancakes."

They say food is a way to a man's heart. How true it is,

You can make your own version of Colin's Favorite Pancakes. Recipe up on the Gluten-free blog! 

It finally happened. It snowed. More than a few millimeters. And it's not melting. At all. In fact, it keeps starting again. The footprints I made on our sidewalk just a couple hours ago? They're already gone. It's beautiful, but it's strange. 

Life, with snow, that keeps on moving? Outrageous. DJ still has to go to work. Kids still go to school. The trains still run. Life doesn't shut down and the grocery stores are not out of stock from the freak-out mob raiding the shelves the moment the first flurry is spotted. It's so different than everything I have ever known!

In fact, we had a doctors appointment today, and I was getting nervous as we got ready to leave. My stroller is very american. It worked great at first, but I've traveled far more kilometers than I'm sure it was ever intended to go. And the wheels are NOT made for ice and snow. So venturing out into the day, with fresh accumulation and my tiny set of wheels? Nervous is actually an understatement. So I was thrilled to get a call from the nurse moments before we left the house letting me know they needed to reschedule. Fantastic! So we got a fun snow play day instead! AND, our neighbors were heading out and offered to let us play with their "snow boards" for the day. AWESOME!!!! We'll have to get our own sleds eventually. (We are SO ill prepared for this wintery life!) 

All Colin has asked to do since the first flurry fell a few weeks ago was build "a frosty snowman". So when it was finally sticking yesterday, we bundled up and got ready to go build our first snowman in the yard. But... the snow wouldn't stick together. It was the fluffiest white stuff I have ever felt in my life. I actually picked it up and could see the individual flakes fall down again. I never knew snow could feel like that. I had lived in North Carolina my whole life. Where, we got snow, but it's always watery. Mixed with ice. It sticks together well, but not at all fluffy like it is here! So... I couldn't build a snowman. Actually, the snowball in the picture below is the biggest I could make. I am hoping that as more snow falls, and it's less "fresh" that it will stick together. We have a carrot waiting for us in the fridge, and frosty the snowman must make an appearance before the snow melts away...

Today I have spent a bit of time updating the website... moving some pages around and preparing for the 2012 CF fundraising season. I also decided to create a subpage devoted to our new Gluten Free lifestyle. 

I have found certain Gluten Free brands that I love. I have found some websites that offer amazing recipes and suggestions. I have tweaked some classic recipes to create delicious Gluten-free staples in our home. And I want to share it with you! So check out the Gluten Free page... and send along any suggestions. This is all still so new.

I have posted all our CF awareness videos on the Why We Fight page. If you haven't ever seen these, it's worth a look. Just a simple way to explain what CF is and how it affects our daily life. 

Also, information is up now on how to sign up to walk in the 2012 Great Strides walk for CF. While we won't be making the trip back to the states for the walk in May, my parents - William & Margaret Branigan - have taken on the role of team leader and are ready and waiting to rally with you in Monroe, NC again this year. I hope you will join them in honor of Colin & Katelyn. While we will only be there with you in spirit, we truly still need your support.

You can also make a donation on my CFF fundraising page. We plan to do our own walk on May 5th as a family here in Denmark, and we will continue to raise funds for the cause from afar. Every dollar makes a difference. Would you make a donation today?

Last of all, I have posted various links at the bottom of the Cystic Fibrosis page that you may find interesting. While we always support the CF Foundation, there are many organizations making an impact for CF. It's always encouraging for me to realize we are not alone in this battle against Cystic Fibrosis.

You know how sometimes your Facebook news feed will be lit up with a certain topic, like a game or event or whatever? Today... that happened to me. Every single person I know who is a CF parent or works with Cystic Fibrosis was posting. Today is a big day for the CF community.

So what's the big news? The FDA approved Kalydeco.

Kalydeco (formally referred to as VX-770) is the drug we've been talking about the last few years that targets the basic defect of CF. Studies showed that it is completely changing the lives of CF patients with the G551D mutation. (only about 1,200 of the 30,000 CF patients in the USA). While that's not a huge number of people, it's still a great step forward for Cystic Fibrosis. And because of the success of this drug, those 1200 people can dream of AND plan for their futures - an opportunity they never had before! 

Colin and Katelyn have the most common CF gene (DF508). There are drugs in the works now for that mutation but it will likely still be a few years before we see testing and an actual product on the market (assuming it works...). Over 90% of the entire CF population will be affected if they discover a solution for our gene. We will keep believing that it is possible! Because it is still several years down the road, we must keep raising money and support. Dollars fund research, and this research is going to help my kids live longer. It's that simple.

One of my favorite quotes was from the CBS article (link below):
"Two weeks after using the drug my lung tests were above average for a healthy 15-year-old who didn't have cystic fibrosis," said Nick Mangano, 17, a patient in the study who has been taking the drug for two years. Before starting on Kalydeco, Mangano said he was hospitalized for lung infections five times in four years. Now he says he recovers from a cold within a week or two.

I don't know what it's like to have a healthy child. I may never know. But I will not stop dreaming about the day that Colin and Katelyn don't have to do treatments for over an hour a away, take 20-30 pills a day, suffer from complicated infections, and take seriously strong antibiotics just to maintain some semblance of "normal". The news we heard today means that it IS a real possibility. It means someday CF may not be so hard anymore.

***NOTE: This is not a cure. This is still a medication, taken twice per day, to mend the root problem. THINK: Like insulin to diabetes, is kalydeco to Cystic Fibrosis.***

Read more about Kalydeco:

NY TIMES http://www.nytimes.com/2012/02/01/business/fda-approves-cystic-fibrosis-drug.html?_r=1

CBS NEWS (video at the end of article)http://www.cbsnews.com/8301-504763_162-57368992-10391704/cystic-fibrosis-drug-kalydeco-approved-by-fda-what-does-it-mean-for-patients/

CF Foundation http://www.cff.org/aboutCFFoundation/NewsEvents/2012NewsArchive/1-31-FDA-Approves-Kalydeco.cfm

p.s. Today is my HALF birthday. I realize most people over the age of 5 don't celebrate half birthdays... but I still like it. I think this is a pretty awesome half-birthday present too. ;-)

We have not officially had a snowstorm here in Denmark. This last weekend, DJ & I were certain it was beginning... the flakes were huge and fast and sticking! Then by late that day, it was melting already. Some of the snow has stuck around, as the temps have stayed pretty low and it hasn't rained again, but we certainly are not experiencing deep snow, or even the kind good for playing in. My kids, however, who have rarely seen the sight of snow, still this it's pretty cool. And we found a big field nearby that was gorgeous.

While we were out today, all Colin kept talking about is "watching the trains over the water". What he meant is from this small ledge right behind our house. I have no idea WHY he wanted to do that today so badly, but why would I possibly say no! While they were watching the trains, I snapped this cute shot of them and thought I'd share.