Wednesday, April 30, 2014

It's easy to forget . . .

Amid the pills, the treatments, the doctor visits, the mucomyst clouds that float around my home and penetrate the curtains, really, it is. 

When I look at Olivia, I see her. I see a beautiful, humorous, loving, animated 4 year old little girl. I see my daughter, with her sparkling blue eyes and her flowing blonde hair. I see her smile, I listen to her laugh, I love to hear her sing. I see Olivia, I see my girl, I see my daughter.

It's easy to forget. 

I know that she has a disease, I know that she has cystic fibrosis. You'd never know just by looking at her, neither would I. For all I do know about the disease, about the severity, progressiveness and graveness of it all, it's easy to forget those things and keep trekking on, letting the days turn to months and pass to years. And here I sit, over 4 years later with a bubbling little girl that has a deadly disease.

I sit here knowing the real stories of infants and children that have been taken by this disease. I sit here knowing that there are adults living with this disease into their 30's, 40's and beyond. I sit here knowing that we don't know what this disease is fully doing to Olivia. I sit here knowing that we won't know what Olivia's cystic fibrosis will look like for her. Will she live to be 30, 40 or beyond? Will her life be cut short, before she's a teenager? Will a cure come and make all these uncertainties go away?

I don't know. 

What I do know is that right now Olivia is well. Aside from her weight, her pulmonary issues are minimal, at least that is how it seems. Again, the silent killer, she looks perfect on the outside but what havoc is being done on the inside, I shutter to think and dread finding out how her cf has progressed over the last year in a few weeks when we head back in for annual studies at our cf clinic visit. 

The cf population is small, and yet, I find myself thinking, hoping, praying that against all odds Olivia isn't one who's life is cut short. I find myself coping by reiterating that she is doing well. I tell myself, yes, she is underweight but she hasn't had any lung issues. I find myself believing that she will live for a very long time, a long fulfilled life. 

Perhaps this is how I cope, perhaps this is me having hope. 

Perhaps this is the only way to make it through each and every day living with a disease that can quickly strike up and take her away from me. 

Perhaps believing it won't happen to me, to us, believing that Olivia will be a "lucky" one to live to an old age is how we as humans deal with unimaginable situations. 

Yes . . . it's easy to forget, until it's not.

Last night after Jeff and I had tucked the kids in and settled down to put our feet up and watch tv, Jeff flipped on an episode of Legendary Motorcar. We were watching and the main guy Pete, starts talking about a boy Sam who keeps popping up in the shop to check out the legendary cars. We later find out Sam is a 12 year old boy with cystic fibrosis. You'd never know, he looked like any other 12 year old boy, he wasn't "too skinny", in fact he had no outward signs at all. We then learn from Sam's mom that Sam's cf has progressed to the stage where he has now been listed for a double lung transplant. 

He's 12! 

He was living, breathing, riding in cool cars . . . he wasn't in a hospital, he wasn't having to breathe in supplemental oxygen, he looked like he was living like you, like me, like Olivia. It was later in the show when he was having an awesome fast car ride that he started laughing and had a minimal coughing attack. To others this wouldn't even have been a "sign" of cf.

My heart stopped for a moment: for one I was surprised to be watching another tv show where cystic fibrosis was actually mentioned, and for 2, this boy is a child, just 12 and is nearing the end of his journey. 

Man . . . for as easy as it is to forget, to ignore the reality, it's just as easy to be reminded of it, to have it thrown back in your face, to have days where you want to do nothing but cry and sulk and scream at the unfairness of this wretched disease that is and will continue to do everything it can to take my daughter away from me, to still her life, to leave daddy without "daddy's little girl", to leave brother Landen without a sister and a best friend. 

Some days are so hard, some days are so tough, some days are so unfair, some days the emotions of fear, grief, death are so strong it's hard for me to breathe. 

Some days, it's not easy to forget, not at all. 

Today Olivia is a bouncing, bubbling, blabbing, beautiful little girl. Today she is doing well. Today she isn't sick so it's a maintenance day. Today she is here, today she is with me, today was another day I was fortunate to wake up and have things be "normal" for us, today we were gifted another day.

What will tomorrow be like? What will next month be? What will our lives be like in 8 years, near Olivia's 12th birthday?

Today it's too hard to even think about or imagine. Today I'm reminded of how much we need a cure and how quickly it needs to happen. Today I am reminded that today is good, tomorrow may not be. Today is a hard day. Today, I only wish it was easy to forget. Today I wish I could push these awful heart-wrenching thoughts from my mind . . .  for now, I'm going to try to forget, to enjoy today. Today I'm going to soak in the sounds of Olivia singing the music from Frozen so that I will never forget all there is to know of her. 


Thursday, April 24, 2014

It's Official

It's Official . . .


Team Olivia/Polaris was the highest fundraising team for the 2014 Climb for a Cure and we want to extend a very big, BIG thank you to all of our team members, our family, our friends, our Polaris family, the Polaris Foundation and all of you whom donated precious dollars in support of our team to help us achieve this honor. Jeff's co-worker, Jeff W., had set his goal to be the highest fundraising team for the 2014 climb and in turn worked very hard to recruit and encourage others to donate and join our team. We thank him for his dedication and determination and we are beyond excited that he achieved his goal. 

The award is super awesome, it's great to get a pat on the back for the hard work our team put into raising as much money as we could to bring a cure that much closer to a reality for Olivia and all those with cf. With that being said, we know the award and honor isn't what it is all about. It's about the money we raise that goes to research, to support the foundation that has the means possible to end this disease, to extend Olivia's life and to free her from all the havoc that is cf. We are honored by this achievement, we are humbled by all those that supported us and we hope that we are as fortunate in our fundraising efforts going forward, as we continue our mission to help the CFF find a cure, not stopping until it's a reality.

Thank you to everyone of you who made it happen.

To my dear friend Lindsey, may our friendly rivalry and competitiveness push both of our teams to be the best we can be for the 2015 Climb for a Cure! Can't wait to see you there!

Tuesday, April 22, 2014

3rd Annual Dreams for Olivia Event

CF is a tough disease, often coined the "silent killer" - for those inflicted with it, look "normal", healthy, good even on the outside, but on the inside, they are anything but. There are often no outward signs to show us how sick a person with CF really is. For those of us who deal with it every single day however, we know better. We know it's progressive, we know all too well, that if a cure isn't found soon, before her lungs further succumb to the beast that is cf, Olivia's life will be cut short. Thus, it is with heavy hearts, always hope and determination that we continue to do all that we can to raise, 10's, 100's, 1,000's of more dollars whenever the opportunity knocks because it will never be enough money until a cure is found. 

We have already had a fantastic year fundraising - raising over $15,000 through the 2014 Climb for a Cure. We are humbled and blown away by this and we thank everyone who helped us make it happen. It's hard to continue to ask for donations, it's hard to continue to fundraise but we do it because cf is hard. It's hard for Olivia to be confined to the couch doing treatments two to three times a day while others can get up, walk around and do something else. It's hard for Olivia to take pill after pill after pill and still not gain enough weight and absorb food like she should. It's hard for Olivia to have days when she doesn't want to do a treatment only to be told she has to, yes cf is hard . . . you get the picture. 

Thus, we continue to ask for people to join us in our fight, we continue to ask for donations because someday soon when Olivia understands all too well what cf means for her, we want to tell Olivia that we did everything we could from the get go to raise as much money as we could for her, for a cure, for everyone who battles this disease. I want to tell her I fought hard, I want to tell her I never said, "we've done good enough", I want to tell her that I did all I could to prolong her life. I want to tell her this while cheering and celebrating that a cure has been found, but if that day doesn't happen before it's too late, I still want to tell her this as she prepares to take her last breath. To say CF is hard . . . it's an understatement. 

Thus an opportunity has presented itself to raise more money to support the CFF and continue our fight for a cure. I know that this isn't much notice, but when an opportunity knocks, we'll be there for Olivia - not turning down precious, life saving dollars. With that being said, if it works for you to join us on Saturday, May 17th for the 3rd Annual Dreams for Olivia event, we would be honored and if the short notice will not work for you, we completely understand. If you want to golf, please email Tyann as soon as possible at tyann.marcy.pbvl@statefarm.com or message her through facebook to secure a spot. In lieu of golfing/attending, donations to the CFF will be accepted by contacting myself directly at bm_fiala@hotmail.com. If you want to donate to the silent auction, please let me know as well.

Again, I know it's short notice, both Jeff and I didn't believe the event would occur this year, given the tough year Tyann has had. However, Tyann, AJ and Hilary are determined to put this event on. Tyann knows all too well that cures for diseases are necessary and never come soon enough, so I thank her, from the bottom of my heart, for her tireless efforts in pulling this event together to continue to raise money for the CFF. 

3rd Annual Dreams for Olivia Event
Saturday, May 17, 2014
Windom Country Club
4 person best ball Golf Tournament 
(Registration at noon, tee-off at 1:00 pm)
Silent Auction & Dinner following the golf tournament

More details to come as I'm informed.


Monday, April 14, 2014

Emery Grace Collection

A few years ago . . . the kids and Jeff bought me a charm bracelet. I only wear it on special occasions which equates to "not so often". Being a stay at home mom and all with a hobby for woodworking, building and making things. . . well lets be real, jewelry isn't part of my day to day attire and some days, I spend the majority of my day in my pj', or old work clothes - just sayin'.

Anyway, regardless of how often I do or do not get a chance to wear it, it's still very special to me, after all, it was a gift from my 3 most favorite people ever. Currently I have 4 charms on it, each one unique and special in it's own way, and after 3 years, I like it just how it is. A few years ago, I wanted a "Cure CF" charm to add to it. I looked and looked and googled and googled some more, and never could find anything to suit my fancy, or any CF charms at all really.

Then a few days ago, I was reading through another CF mama's blog, one who's daughter is younger than Olivia and I stumbled upon the most perfect thing . . .


A Cure CF Charm bracelet.



I was in awe and as soon as I finished reading through Amy's post, I ordered mine up right away. It's perfect, a charm bracelet all of it's own, one that I can wear with pride, knowing that the donation I paid for it is going directly to the CFF in honor of Emery and her fight against CF and a bracelet that represents our fight and our ultimate goal: to cure cf.

Today I was giddy to receive mine in the mail, I think it's going to be a great conversation piece, one to raise awareness and let me put my plug in to anyone who asks about it going forward, a bracelet to help spread awareness, share our story and advocate for the CFF and finding a cure . . .


And this way . . . I can leave my other charm bracelet (the one gifted to me from my 3 most favorite people ever) alone - just as it without having to change it.

Do you Love it?

You can find out more about the Emery Grace Bracelet Collection HERE.



Thursday, April 3, 2014

We're still here

Last night I was reminded by a sweet friend that it had been awhile since I had posted anything about Olivia  . . . or anything at all for that matter, on her blog. This morning when I looked at the date of the last blog title, I was quite surprised that it's been over 6 weeks, I guess we've just been busy and life has gotten in the way.

I wish I could say we've been loving spring . . .  making the most of "nice" weather . . . creating memories outdoors - but . . . not so much. With snow flurries falling and measurable snow forecast for tomorrow, we've been mostly stuck inside. The few glorious days where it's actually been above 40 degrees outside, which seems like a real treat, we have taken advantage and spent as much time as we could outside - splashing in rain puddles, creating chalk art masterpieces, going for bike rides . . .  man on man, I hope spring weather arrives soon.


In March Landen celebrated his 100th day of school, that in itself was quite the achievement!



We enjoyed our annual St. Patty's Day party, topped off with a green and rainbow themed dinner and a "follow the rainbow hunt to your treasure". The kids always look forward to this, no doubt because of the treasure at the end of the rainbow!


We also headed to Wisconsin Dells with Jeff's side of the family for a fun waterpark trip to celebrate Aunt Jennie's big birthday. It was a lot of fun and the kids ask to go back quite often.




The 4 hour trip home wasn't so grand. Being out of routine and somewhere different than home and all that jazz proved to not work in Olivia's favor on this trip. She experienced some of the symptoms of a partial intestinal blockage with stomach pain, vomiting and less stools. It was a worrisome few days but thankfully with the assistance of our CF team she was able to clear herself out and be back to normal within a few days. Definitely no fun to go through but something we will know to keep an eye out for in the future. Because of her intestinal issues and meconium ileus at birth, we already know that DIOS is highly likely for her - just another reminder that CF is always lurking, always trying to wreak more havoc.

It's been a long few months in our household with back to back colds and viruses for both of the kids. It seems that as soon as one cold is finished another one sets in, so it's been many days, weeks and months of 3 treatments/day and crabby, not happy kids. As a result, Olivia has again dropped in weight, which while being nothing new, it's still always a worry, always a fight. It never fails, we gain some ground and then more is lost. CF is so much of one step forward, two steps back.

We are hoping for cold and flu season to leave, warmer weather to come, less colds for the kids and some weight gain for Olivia all before we had back to CF clinic in May for Olivia's next follow up and yearly lab work and annual tests/procedures. I'm always reminded that even when things are good, cf is always present, always progressing. How I wish for a cure.

I never did find out if it was Team Olivia or Team Briley that came in as the top fundraising team for the CF Climb for a Cure back in February. Regardless, I know both I and Lindsey (Briley's mom) are beyond grateful and thrilled that both of our teams were able to raise such a wonderful amount of money for the CFF, to bring a cure that much closer to a reality for our daughters. Our team's official total was a very impressive $15,746 raised on behalf of Olivia for the CFF. How grateful we are to all of you who helped us do it.

For the past 4 years, on and off, when time permits we have slowly but surely been working on finishing our basement. After completing the bath and spare bedroom a few years ago we took a much needed break. With 2 children, a husband with more than full-time job and only weekends and evenings to work on it, the cycle seemed to go: bust our butts for a good while, burn out completely and take a long break. We weren't in a real hurry to finish it, the space in our home that we do have finished is already plenty but as we began to work on it some more over the long drawn out winter months here - the end and our vision were in sight so we decided to again bust our butts and finish it off.

We had a goal - to have it finished in time for Landen's spring break so that we could watch the Frozen movie in our very own home theater. I'm happy to report that we achieved our goal. Aside from a few last odds and ends and decorating, we are done! Last Friday night after the carpet had been installed we set up shop and all hunkered down with popcorn and snacks to watch Frozen on our very own big screen. It was an absolute blast, I seriously think Frozen is my favorite movie of all time, it's so cute. I think we've at least started the movie again almost every evening this week, the kids just love being able to go the movies in our very own home.


It's a little strange to have the basement completed and not have a big project to work on around here. Jeff however has assured me that if I am ever itching for a project to work on . . . he has plenty of things to do in the shop - he's so very thoughtful! However, it's nice to slow down a bit and to cross a few more items off the never ending to-do list, especially with nicer weather, sure to be right around the corner . . . right?

We finished off Landen's spring break last week with a trip to the Science Museum to see the dinosaur exhibit. It had been a long time since either Jeff or I had been there and the kids really enjoyed their first trip to the museum and were fascinated to see how big the dinosaurs actually were.


Now, if spring and summer will actually arrive soon and last for a long time, that will be grand.