It's been quite a busy week here... last Friday, my father (pop-pop to the kids...) arrived in Denmark for a one-week trip. Along with pop-pop himself, came about half a suitcase stuffed with toys, clothes and snacks for the kids. They were beyond excited about him being here! and for the loot.

The week has been amazing on so many levels. The weather has been perfect! Cloudless. Warm (actually, kinda HOT!), and not a single rain drop for over one week straight... incredible, really. There have been a few stresses to come our way - that I will share sometime in the weeks to come - but most of all, we just had a good time.

Most days the kids went to kindergarten while Dad and I explored. But we took the kids with us for a couple adventures. Enjoy some shots of our week together...

We'll be sad to see him leave, but glad we had the chance to spend an entire week with pop-pop in our new home!

I have two days each week with no commitments. I drop the kids off at kindergarten, and the rest of the day is filled with whatever I want: usually cleaning, appointments, shopping, studying and occasionally - some fun for me.

Last Monday, I decided to drop off the kids and go for a run. I haven't ran in a very long time... and it didn't last long. I have bad knees and somehow I always convince myself running is a good idea - but it's NOT! So... I was hyped up with nowhere to go... and I decide to use that energy to take the long way home and just stroll around the town. Maybe see a few sections of Nivå I'd never seen before. 

Nivå is a lot bigger than I'd realized. I walked past more apartment complexes and housing developments located just beyond the kid's school that I'd never seen before. The population of Nivå is less than 8,000. I guess that sounded like a small number to me, considering the metro Copenhagen population is nearly 2 million... but still - 8,000 people means a LOT of homes... and a lot of people I may never know, even if it is a small town.

I am thankful for my iPhone and google maps. It's fantastic to just pull up the map and follow the little blue dot showing me exactly where I am... I have the freedom to explore without the fear of getting lost. (if you didn't know... I have zero sense of direction. really. i'm terrible...). I still had energy, and no plans all day... so I moved beyond the homes and onto some small dirt paths headed out into the open fields, just beyond the town.

It was magical. Several benches were scattered along the path, and I had to sit down and just take it all in. The above photo was taken from one of the benches. Up on the hill in the distance is Nivå Kirke (church). It was a beautiful sight up on the hill with the morning sunlight and the crisp blue sky. It was so quiet. peaceful. I found myself completely captured by the moment and beyond the church on the hill... I couldn't stop gazing at the mass of green grass and trees, the flowers all around, and a feeling that I love so deeply... that this was all created. 

Beyond the church and open field, I found a path through a small wood than ran alongside a creek. I couldn't help but stop and climb on these GIANT logs that I passed along the way! 

Following the creek, I realized I was on a path I had seen before from above via the train. The path/creek runs through this tunnel, under the tracks. I felt like I had discovered a secret hideaway. I know it's a place anyone could come, but no one was around. The rippling of the waters was so peaceful. I think I'll go back to this spot someday with a book and spend a few hours away from the rest of the world.

Just beyond the tunnel, the path came out of the woods and I found another giant field of green with tiny bursts of yellow scattered throughout. Dandelions may just look like weeds to you when they're in your front yard, but I love them. I love how they make my kids (and me) happy to find a bright yellow surprise amidst the sea of green. 

Soon I ended up on a familiar road. After all my exploring in the outer edge of town, I was once again on the road that runs by the sea. I wonder if I will ever get over the beauty of the water. I see it daily - and I am still in awe, I still feel shocked that I live here. That this is not just a vacation. Or a dream. But it's my life and my home.

By now my feet were getting a little tired! I had a choice to cut across the tracks, back through Nivå Center and take the familiar paths back home... or continuing on my circle around the town and see what other unexpected surprises I could find... I choose the latter.

A narrow dirt path split from the smoother and wider cycle path. Of course, that's the route I chose. It was my favorite part of the day. I thought I felt alone in the woods before, but this was even better. The canopy of trees above, and the rough ground below filled me with such appreciation and gratitude. I cannot explain well how it really makes me feel.... but it's in moments like that where I believe without a doubt that God is real, and He created the beauty we find in nature, It's just so perfect and so amazing. 

As I was walking along, I noticed an even smaller, less traveled path heading backwards, down a slight hill and into the trees. I debated following it... glad once again that I was there alone and the only voice telling me what to do was my own! I had no idea where I was going or where the path would lead... but after a short walk and a few steps down, I came upon a lake. Similar to the one I can see behind my house, but even more secluded. 
I just sat and stared. My mind was clear. My heart was open. And my spirit felt more alive alone in those woods by that water than I have in a very long time. 

The journey had taken almost two hours since setting off from the kids school earlier that morning. I had passed some amazing scenery along the way. But this spot, and that moment... they were the reason for it all.

And I almost missed it. I almost kept walking instead of following down that extra small path. Part of my mind told me it wasn't safe. That I shouldn't go. To just stay the course and get home. That I was hungry, and tired. And had things to do.... but I didn't listen to those voices. And I am so thankful for it.

While my journey was real - setting one foot in front of another and trekking around my town, capturing the beauty all around... the lesson learned can be applied in so many ways. For so many people.

Wherever you find yourself today... I challenge you to go off the path. Step away from the norm. Take a risk. Try something unexpected. Go so far that your feet ache. Don't be afraid. You just may find peace and beauty you could never have imagined. If you don't... you might miss out on the absolute best for your life.

Today was lovely. I didn't have many expectations for mother's day today. As most holidays tend to roll-out in our life... it's just another day. Life continues. No big deal. I'm not the kind of girl who loves getting presents or even drawing much attention to myself, in fact I find the best gift of all is just spending time with someone. Enjoying life.

And that's exactly what happened today. I spent the day with my favorite people of all.

We had a normal lazy weekend morning... breakfasts, medications, eventually getting out of our pj's... and at some point mid-morning DJ explains to the kids that today is mother's day... and that it means they should listen to me today - like all days, but especially today. And that they should try to make mommy happy.

The sun was out today, with no rain clouds in sight... so we decided to venture out for the day, with no real destination in mind. Just hopped on our bikes headed for the station to go into the city.

Not more than 30m down the path, we both looked at each other, sure we were thinking the same thing... it was a perfect day for a bike ride. So instantly planned changed. We turned left down another path, and decided to cycle to a nearby town (about 8km).... something we'd talked about doing - but the longest bike ride we've had yet.

I have been exploring Nivå lately... walking along the unpaved paths, finding open fields and winding creeks. Enjoying nature to the fullest and the magnificent beauty that lies just around the corner from my home... today my love for this place intensified. On the ride down, just as we exited the town and began down the Strandvej, I was mesmerized. The sea to the left, and this vast field of gorgeous yellow flowers to the right.

Next time someone asks me why I would possibly choose to live so far outside of the city, this explains it all...

We rode down to Rungsted Havn. We'd heard it was a nice place to go... a good town with a large harbor, full of boats. On a day like today, MANY of those boats were out sailing - which the kids loved to watch! It turns out the strand (beach) in Rungsted was not that great... more like a sandy dock for kayaks... but still we set up a blanket for lunch and enjoyed it anyway. 

As we began packing up to head back, the kids asked if we could go to a park to PLAY. So as we rode back home, we stopped when we saw an ice cream shop along the edge of the road. Behind the shop was a path leading to another quiet sandy strand... and this one looked like a place the kids could actually play! Ice cream isn't always gluten free... and I didn't have much cash... so the kids each got one cheap popsicle which was the perfect treat for them anyway!

We had a fantastic time at the beach. We laid down gazing into the bright blue sky, took turns tossing shells into the water with the kids, and just listened to some tunes while enjoying the moment together as a family.

Finally back in Nivå we gave the kids what they really wanted all along... playtime at the park! By now, DJ and I are feeling pretty exhausted (about 16km round trip -whew!!!), but we both agree... today was worth it.

Today was full of so many wonderful moments, I can't decide which was my favorite part. It's a 3-way tie between Katelyn scream-singing the barney song the ENTIRE ride down to rungsted today (i love you... you love me... we're a happy family!!!).... or Colin giving me a hug at dinner and saying "mommy, I wouldn't ever want to be without you".... or colin at bedtime after I tucked him in under the covers... with sleepy words he says "mommy... I had a great mother's day..."

Me too, sweetheart. Me too.

Oddly, my chidden LOVE LOVE LOVE eating fruits and veggies. Sometimes I have to beg them to stop eating their veggies and finish their french fries and chicken. SO odd. ;-)

But I guess it's good... so I'll go with it! I know their appreciation for the colorful crisp naturally delicious treats has only increased as their snack twice a day at the kindergarten is cut fresh veggies.

I set this plate out the other evening while I was cooking dinner, as a pre-dinner snack... and Katelyn jumped up to the table and quickly filled a bowl with a few of every option. She was SO excited it was hilarious. 

By the time dinner was over, they had finished off the entire plate of vegetables. I MAY have had a bite of pepper... but it was ALLLLL them. My little vegetable monsters!

Yesterday, some promising news was announced that patients with deltaF508 mutation (like colin and katelyn) are showing significant improvements on a combination of medication: the newly approved Kalydeco, taken with VX-809. Because of these promising results, Vertex Pharmacuticals is accelerating their plans for a pivotal study, which is required for the drug to be approved by the FDA, and into patients hands.

This is amazing news - as it means the time may come sooner than later that Colin and Katelyn can take this combination of medication daily and see drastic improvements in their health within weeks. Hopes in the CF community are high - as the majority of CF patients have this mutation, and approval of this combination of drugs will transform the affect of Cystic Fibrosis in our world. 

Read the announcement here:
http://investors.vrtx.com/releasedetail.cfm?ReleaseID=670755

and here: http://www.cff.org/aboutCFFoundation/NewsEvents/2012NewsArchive/5-7-Phase-2-Kalydeco-VX-809-Interim-Data-Results.cfm

Thank you to everyone who helped support the CFF by donating to the Great Strides campaign this year. The many who walked, fundraised, and donated last Saturday helped our team raise nearly $7,000 so far this year! It's not too late to give, if you would like to make a donation and continue to support CF and the amazing work being done like mentioned above, give here: www.cff.org/Great_Strides/GoFightingFish

I take for granted the fact that my children can swallow their pills. I can still vividly remember pouring the capsule onto applesauce and feeding the medicines with a spoon... but it's just become for normal for them/us that I don't even recognize how special it is that my 2 and 4 yr old take dozens of pills each day, without a problem.

The kids have both been on antibiotics for a few weeks, and the photo above shows their evening dose of medication. They take this before dinner. And it's just part of routine. 1) wash your hands, 2) sit at the table, 3) take your medicine.

What's in the photo:

Katelyn (yellow) takes 4 enzymes with every meal, and 2-3 with each snack, for a total of 16-18 enzymes per day. She takes one vitamin every morning, and a ciprofloxacin pill morning and night. She was also taking liquid amoxicillin 3x/day for 2 weeks. This is only the oral medication. In addition to all this she still has her respiratory therapies and medications that she does twice per day.

Colin (blue) takes 5 enzymes with every meal, and 2-3 with each snack, for a total of 19-21 enzymes per day. He takes a vitamin each day and night, a pill called omeprazol 2x/day (for GI), and to treat recurrent infection he has been taking half a pill of amoxicillin 3x/day, liquid fucidin 2x/day, and a pill called rimactan 2x/day. Same as Katelyn... this is just his daily oral medication. He also does many respiratory therapies & inhalants 2x/day.

If you're looking at this and you're thinking, "wow, that's a LOT to handle"... you're absolutely right. It is a lot. Every week I take down our big boxes of medication and divide and fill the individual pill boxes for the week to keep everything in order and simplify the process as much as possible. Both we and the children's teachers must remember the enzymes every time we eat and especially any time we leave the house for a snack or a meal. It's a lot. And it's all because of Cystic Fibrosis. It's all to maintain health as much as possible. It's necessary.

This is what we do every day. This is what so many other people with CF do every day -- or sometimes they do much, much more! And this is why we continue to raise money for the CF Foundation. If you have the ability and the heart to make a donation, we would appreciate your generosity. The CF fundraising walk is this upcoming Saturday, and we would love if you can help us reach our goal this year.

Our TEAM GOAL is $10,000. Raised $5,050... $4,950 to go!
Our FAMILY GOAL is $1,000. Raised $230... $770 to go!

Thank you. Really. It means more than we can ever say.
Make a donation here: www.cff.org/Great_Strides/GoFightingFish

Happy May Day! It's the second day of bright, sunny, and actually WARM weather here in Denmark. I kicked off the boots and wore flats without socks for the first time since setting foot in the country over six months ago. The energy has risen on the streets. Not just the anticipation and excitement of the upcoming spring... but it is HERE.

This warm weather brings with it a few new challenges for us to conquer. ONE: the absence of air conditioning. It's not really necessary, but we must remember to open the windows as much as possible to keep the temps down and the air fresh. It's become my daily ritual... go into each room and open our ginormous windows as soon as I enter the house... the fresh air is lovely and it's quite a nice treat to actually experience the open air in the springtime: DJ's allergies in nc were so horrible we were forced to use the a/c and keep the windows shut always. So it's very nice to be able to breathe.

As I have been meeting people from different cultures, I have actually become interested in the history and customs of others (who'd have ever thought i'd care!!). Especially on a day like today, where some people are off work (officially and unofficially), and others have no idea it's anything more special than the beginning of a new month. 

My personal memories of May Day as a kid were singing/dancing songs we'd prepared as a class to our parents and other students, before the older kids danced around the May poll with colored ribbons. 

>>Read about May Day here.

But I also learned that today is International Workers Day: a term I don't recall ever hearing before. (but only perhaps because I live in a bubble and never cared before...) Even though the history seems to have largely developed in the US, Americans celebrate Labor Day instead in order to take the focus off the riots and more to commemorate the workers. 

The holiday is not significantly recognized here in Denmark. DJ went to work. I went to school. The kids are in kindergarten. But there are some festivals and celebrations in the city... some some fellow students did NOT come to class today because it is a recognized holiday in their culture.

I am learning so much in my new international world - I love it!

In many ways, I am quite random. sporadic. spontaneous. flexible. But in many others, I thrive on routine. planning. achieving my expectations and goals.

I like to take different paths around the town every day instead of always going the same direction. 

I will gladly blow off my personal plans for the day for an unplanned opportunity to spend time with someone or do something fun and new.

I prefer to plan dinner a few hours before it's time to eat rather than days in advance. 

But I also feel the most at peace when everything is in order in our home. When I have a written, thought-out, to-do list instead of some ideas running in my head. When things are scheduled and planned, and actually happen the way I think they should.

DJ loves structure. He'd probably be happy if we had a pasta night, a fish night, a chicken night, etc. He always takes the exact same route to and from work each day, and actually gets a bit uncomfortable if I ask him to go a different direction.

Colin is exactly like his father. He eats the same breakfast every morning. He insists on going the same path to school each day. He expects to see the same teachers when he arrives, and doesn't feel safe if she is not there. He greets me in the same way every afternoon when I pick him up from school, and asks me the exact same questions every time. I bring him a snack, and lately it's the exact same snack because he wants the consistency. He knows the schedule for the evening and is bothered if we deviate from the plan. He even has a certain way of "disobeying" at bedtime and generally his reactions can be expected... because it's always the same.

I can't really tell whether Katelyn really cares. She follows her brother. She copies his actions. But I am not convinced she actually cares the same way as him.... she may just want to be like him.

Having a generally set routine for the kids has helped us function better as a family. The kids know where they go each morning, and know what to do when they get home each afternoon. I have a few hours each day to throw the schedule and expectations out the window and do whatever I want or need to do at my own pace. We get by. And as long as I remember to buy the apples for our daily afternoon snack, we'll be just fine.

There are moments when I feel keenly aware of the natural beauty that surrounds me. I would just like to share some of the latest moments of beauty I have captured over the last week:

Last week I took a day trip to Sweden with a friend to buy a few items I couldn't get in Denmark, and just wander around Helsingborg without the kids. There are several green hills (such a treat compared to the ultra flat lands we see every day in Denmark!) and this lovely garden. 

It was a perfectly sunny, spring day. And I will never stop being amazed that with just a short 20min. ferry ride across the sound... I can be in another country!

The sun has been rising sooner and setting later - which means by late afternoon it is shining directly through my kitchen window. Often at night, we'll wear sunglasses at the dinner table just to be able to see our plate - it's SO bright and blinding! One evening as I was cooking dinner I noticed this view in the sky. Amazing, huh? (and I know this photo doesn't do it justice at all.... I can't capture or describe the intensity of the light behind those clouds!)

I take Danish Language Courses in Hellerup, which is just north of Copenhagen. Typically, I just go to class and go back home. But today as the sun was once again shining down so beautifully, and I had no other plans for the day, I decided to take a walk through the town - and I came across this wonderful little park, with perfect quacking ducks and crisp white benches. As I sat eating my lunch on a bench, listening to some music, and watching the ducks swimming in the water just in front of me.... I had one of those moments where I just felt thankful for the life I have been blessed to live. I will never stop being in awe of the beauty in the world around me.

To our dear friends and family,

Since 2009, the Fighting Fish team has raised over $48,000 for the US Cystic Fibrosis Foundation. We have shared our journey with all of you through the good and the bad, and we have been honored that you have not only expressed interest in our lives and battle with CF, but have showed us encouragement and support – both emotionally and financially – during this time.

As you likely know, our family no longer lives in the US. All of our routine CF care is now provided in Denmark. However this does not remove the real and important need to continue financially supporting the CF Foundation. Here are a few reasons why:

• In January 2012, the FDA approved Kalydeco – a revolutionary medication that treats the root problem of CF for one mutation, benefitting about 4% of the CF population. This development cost the CFF $75 million and about a decade of research. http://www.cff.org/treatments/Therapies/Kalydeco/

• Clinical trial are underway for a combined therapy using Kalydeco that would treat the Delta F508 mutation – the most common CF mutation AND the type that Colin and Katelyn live with. http://www.cff.org/research/ClinicalResearch/FAQs/CombinedKalydeco-VX-809/

• In addition to the above-mentioned treatments, the CFF is continuing research on an entire pipeline of therapies, in order to keep providing the best care possible to CF patients, right now. http://www.cff.org/research/DrugDevelopmentPipeline/

• The developments of the CFF are not limited to the US. In fact, our Danish doctors attended the North American CF Conference in 2011. CF is a worldwide battle. We all want to find a way to make life with CF easier. We all are searching for the cure!

• Just because Colin and Katelyn do not directly benefit from the US CF care centers anymore, doesn’t mean CF is not still a problem for so many people we care about living in the US!

We know the research is important. With proper funding, there may soon be new medications and treatments spreading across the world, completely transforming the lives of CF patients. But right now, and for the next several years, our friends still need to go to their CF doctors. They still need medications to maintain the best health possible. And their care centers, doctors and nurses are all supported by the CFF.

Cystic Fibrosis is considered an “orphan” disease. That means its reach is so small that it does not warrant federal financial support. The CFF depends on donations from people like you in order to keep providing the care they offer at 115 care centers across the nation, and to continue the research they believe in… the research that is truly changing lives. http://www.cff.org/aboutCFFoundation/PressRoom/AbouttheFoundation/

 “One person can make a difference, and everyone should try.” – John F. Kennedy

Would you help make a difference in the CF community today by making a donation to the CF Foundation? 
http://www.cff.org/Great_Strides/GoFightingFish

All donations are tax-deductible. The CFF has such little overhead that 90% of your donation goes DIRECTLY back to research and care. Every dollar helps. Every donation matters.

The Fighting Fish team is walking on Saturday, May 5 in Monroe, NC at 9am. Our family is planning to walk at the same time (3pm in Denmark!). We’re all in this together… all taking steps towards the same goal: CURE CF!


Love and thanks,

DJ, Rebecca, Colin & Katelyn Fish