Wednesday, October 23, 2013

Ramblings

Sometimes, when I'm watching Olivia do all the things 4 year old girls do, when CF is under control, not at the forefront of my mind and things are going okay, I look at her and for just a mere second, I ask myself if CF is nothing but a dream. Those moments are bliss. I look around at my surroundings and question if this is really my life. I try to think back to what my life was like 5 years ago, before Olivia was born, before I knew more than I ever would have wanted to know about CF, when things were so much more carefree and well, . . . easy. As much as you don't want your mind to wander into certain areas, sometimes, at least for me, it can't be helped, so it's in those moments where I find myself wondering, questioning what it is our lives would be like if CF wasn't at the forefront of it. What would it be like if CF wasn't the factor that is driving every decision I make?

There isn't a minute, a day, a year that has gone by in the past 4 plus years that I wish Olivia didn't have to go through everything she does because of CF. Not a second goes by that I wouldn't take the disease and place it upon myself or give up my life, if it meant she could live one free of this disease.

I often forget, for lack of a better word, that the pills with every snack and meal, or the 2 to 3 treatments she endures every day, the neb cups I continually fill up with meds, the doctor appointments, having a medical and pharmacy team feel like part of my immediate family, aren't "normal" things. CF however, is our "normal", but it's easy to forget that it's not everyone's "normal". I didn't welcome it in, I would have loved to slam the door in it's face to keep it out but none-the-less, it made it's way into our home, it's integrated into our lives, for as much as I despise it so many days, it fits in. It's a never ending learning process, one we must work at all the time, but we've adjusted, we make things work, we do what we have to do each and every day to fight this disease that certainly doesn't define for a minute who my daughter is or who we are, but is a part of her and of us as a family.

CF can steal so much. Not only does it forever alter ones body, but it also changes a persons mind, their way of thinking, how they see the world. I hate that neither Jeff nor I will ever see so many things that are "normal" as anything but a possibility for germs or bacteria to be lurking in the background. No, it certainly isn't enough that CF wreaks a whole heck of a lot of havoc on the body, but it also takes a huge toll on all of our minds, our brains, that which makes us who we are. Yes, we are forever changed. Yes, some of it is for the worst, but also some for the better.

Do I hate that I will never again feel completely comfortable taking Olivia into a large gathering situation because of the potential possibilities of bacteria, viruses and germs making their way to her? Do I hate that my life is so focused on infection control that the mere joy of what should be happy things is often lost? Yes, there is no doubt. But, . . . when I put all that aside, I know that I am not who I used to be, 5 years, 4 years, even 1 year ago. I've changed, it's inevitable. I'm a mom, a wife, a primary caretaker of a daughter with a chronic disease, there are so many hats I must put on each and everyday. But through it all, the transformation I've undergone has been nothing short of eye opening.

My 4 year old daughter has taught me more about the important things in life, in 4 short years compared to my other 29. I know that each day we are here is truly a gift. I know that life is too precious to simply let the days slip into months, into years without making the most of them as best we can. I know that we don't have time to waste fretting over insignificant, petty things. I know and have seen that life is not fair, but I believe that God has a plan for all of us. I've learned to appreciate the little things, to hold onto hope with the biggest bear hug ever and to never let it go, to be realistic but also to never lose my optimism. I know that we need not put off until tomorrow what we can do today because tomorrow may never come. I know that for the past few months now, that each night as I read Bible stories to Landen and I try to teach him about God, that not only is he learning and putting together the puzzle pieces of life, but I too am reminded of what's important and of what lies ahead for us after we are done here.

Thus, as I've been reading about the not as promising as we had hoped results from the VX-809/Kalydeco study for DDF508 CF mutations, it's a bit heartbreaking. We wanted more, we wanted the miracle drug for Olivia that some have experienced with Kalydeco. It's sad, it's scary. Time is not on our side when it comes to the progressive disease that is CF. To wait, months, years, an unknown amount of time for that cure, is not what we want to hear especially in a time when things are hopeful and encouraging with the research. But all hope has not been lost, we will continue to fight, continue to fundraise, continue to do all that we can for Olivia to keep her as healthy as possible until the day comes when her miracle drug arrives, because through it all, I believe we are closer than we've ever been, I really do believe the cure will come. We mustn't forget that even though our cure hasn't made it yet, there have been so many before us that have laid the groundwork to get us this far, where the cure is just lurking on the horizon. Thus we will continue to do everything in our power to advance the research to go even further. And in the end, like I told Landen last night, as hard and as sad as it is to know that our humanly bodies will die, our souls will live forever in heaven. He smiled back at me as I tucked him in, no doubt satisfied by my answer that no matter what life holds in store for us here, we will all be reunited in heaven for eternity. This I do believe, this I do hold on to.

So to answer my own question. No. I know CF is not a dream, it's a part of our lives, it aids in defining who we are, it has shaped us into knowing, believing and seeing with our own eyes, what life truly is all about, whats important and how precious our time together is. Do I wish CF was a dream, that the suffering, pain and lives lost all too soon to it were nothing but a figment of my imagination? Most definitely, but not for one minute do I wish to go back to the person I was before we accepted CF into our lives. Yes, our lives are often difficult, yes we have more to do each day in terms of health than some, yes the idea of a life cut all too short is always in the back of our minds, yes we know that CF is a chronic, progressive disease. But for all I've gone through, and for all I continue to trudge through on this journey of mine, of ours, I wouldn't for a second change what CF has taught me, the doors its opened, the people I've met and now call friends.

Just a few weeks ago, our family had the pleasure of being interviewed and video taped, (the kids refer to us now as movie stars), for a fundraising campaign through Jeff's work. We were honored to share our story, to offer thousands of people a glimpse of our lives with CF and to speak about the importance of charity in general and donating to a cause to help others if you can. In turn, since we were specifically advocating about the remarkable foundation that is the CFF and that we channel our donations to it, we were pleased, honored and grateful for those co-workers that chose to elect the CFF as their charity of choice through this campaign. To be able to inform others about CF, share our story and the importance of donating to charity, we were honored and feel very blessed to spread the word about this disease and the foundation that hits very close to home. Yes, there are definitely many things that are not great about CF, there is no doubt, but to be able to open doors for others to learn about the disease, take action and help us reach our goal of a cure for Olivia and all those with this disease . . . amazing.


Thursday, October 3, 2013

Happy 4th Birthday Princess

Olivia turned 4 this week, how did that happen?

We had a party fit for a princess, Princess Ariel to be exact. Back in February when we went to Disney World we had so much fun and the impact the trip had on Olivia was obviously nothing less than unforgettable. As most 4 year old girls are, Olivia too is in complete awe with the Disney princesses, most of all Ariel. Knowing her love for the Little Mermaid, Jeff and I decided to have a Little Mermaid themed party for her celebration. Each of us dressed up as a character from the Little Mermaid. Dad was King Triton, Olivia was Ariel, Landen was Flounder, Shelby was Sebastian and I was Ursula. After spending countless hours making the costumes for each one of us, I think I was just as excited as Olivia, if not more, for birthday party day.

In honor of Olivia's big day, each one of us dressed up in our costumes and everyone, the dog included, tolerated the photos I insisted we take. We ate yummy under the sea party food topped off of course, with a huge Princess Cake. Presents, games and watching the Little Mermaid completed our day. Olivia loved it and she continues to wear her Ariel costume each and every day. During her countless hours of treatments, more than 1.5 hours/day lately due to illnesses, she often picks the Little Mermaid to watch and it is the most precious thing, as each character comes into scene that one of us dressed up as, she'll say, "There's me . . . there's Dad . . . there's Landen . . . etc. I love it and I love that through this party we were able to make her dream of being Ariel the mermaid come true, even if just for one day.

Shelby as Sebastian, Olivia as Ariel (with a mermaid tail) & Landen as her best friend Flounder. 

As I wrap my head around the fact that Olivia is a preschool age little girl now, no longer a toddler, it seems unreal that four years have passed in the blink of an eye. I can recall memories of her as an infant, a crawler, just learning how to walk, each one so vivid that it doesn't seem possible she is already 4. None-the-less, here we are, 4 years later.

A walk down memory lane . . . 






White Kitty had to make an appearance at the birthday party as well, complete with her very own party hat.

Olivia has grown up a lot and continues to develop and grow into the independent little lady that she is. As I already stated, she absolutely loves everything Disney Princesses, most of all Ariel. She can spend many hours each day, happily playing with her princess dolls in her room. She loves to color and paint and has decorated her bedroom walls with all of her Princess masterpieces, almost to the point of pure and utter chaos. She loves to be outside; riding her princess bike, running around, playing on the swing set, digging in the sand or driving her Barbie jeep around with Landen. Big brother Landen continues to be her very best friend and even though they butt heads often enough, the joy and love they share for each other far outweighs the times when they don't get along. 

We are beyond blessed to have this little princess in our lives. We cherish each and every day with her and thank the Lord for the blessings he's provided over the past 3 years and we pray that her 4th year will be grand and full of many positive things. Happy 4th Birthday Little Princess, we love you!