Tuesday, January 28, 2014

Random, Raw & Uncensored

**This post largely is for me, as a reminder of my thoughts, my feelings after reading this book. These thoughts are how I felt at this moment in time, they are not meant for anything other than that. These are ramblings, raw and uncensored, quickly typed up, as to not forget. 

Alex, The life of a child. 

Have you read this book or seen the tv movie?

It's about Alex, a little girl with cf, her story of life battling cystic fibrosis as written by her father, Frank Deford. It was made into a tv movie in the 80's. Last night, I read it. It had been on my "want to read list" for some time, but after the warnings to "not go Googling cf" I steered clear for awhile, mostly from fear of the reality of what the book would tell, the bitter reality of the disease.

4 years later, a heck of a lot stronger, more realistic and understanding as best I can what CF is, and the reality of what the disease means for Olivia, I figured I could handle it. It was a mere few dollars off Amazon, so I ordered it, and it arrived in it's old, worn condition a few days later.

I picked it up, thumbed through it, admiring the work of a cf father, and read it from beginning to end last night. Tears were shed, similarities were made, understanding, learning and so much compassion for this family and Alex and all they endured was the result. As I plowed through to the end of the book, I was left with a feeling of relief really, a bag full of other emotions and for all it's rawness, still hope.

Frank writes, "In a dynamic sequence of events that spanned the fall of 1985, genetic scientists made amazing advances towards finding the cystic fibrosis gene. Scientists successfully narrowed the search for the fatal gene from the body's billions of pieces of genetic materials (DNA) to less than one-tenth of one percent of the body's total DNA. This research breakthrough brings the promise of finding a cure and new research treatments for cystic fibrosis. Thus making cystic fibrosis the "polio of the 80's".

I read that last part once, twice, and yet again, "The polio of the 80's". Wow, over 30 years ago, the hope was there, the cure was coming, a promise. One could read that and think, wow, 30 plus years ago so many advances were made, cf was referred to as the "polio of the 80's", yet today, here we are, over 30 years later and still no cure. In a previous life, as a doubter, I probably would have thought that way, been pissed off really that we sit here with this disease still inflicting children everyday, new cases being diagnosed, new infants being born with it - and its 2014. One could question, what the hell are we fighting for? But no, that was not what I thought last night. As I read the "billions of pieces of genetic materials", I thought holy cow, that was a huge accomplishment to discover just that piece and yes, we do not have a cure yet, yes we still lose children to this disease, but look at how far we have come.

If Olivia had been born 30 years ago, we'd be lucky if she was still with us, or maybe she would have had just a few more years to go. Of those years, how much of that time would have been spent in the hospital, spent in pain? How much hope would we actually have been able to muster? But today, even though we still wait on a cure, a way to control this disease, so much more is known, so many more therapies have been discovered and implemented. Where years ago there were only a handful of antibiotics, today we have much more arsenal, so much more. Olivia is 4, aside from her first 10 day stay in the NICU after her birth, she's never again been hospitalized. She can run and play, she doesn't yet struggle for breath, she looks and for the most part acts and is, just like any other 4 year old little girl. However, to keep her this way, we fight like hell. One of the most eye opening quotes from the book was this,

"When a child has cystic fibrosis, she never simply lives. She must be kept alive." 

I thought about that for quite some time. I guess, I had never looked at Olivia's life through that lens before, so I questioned - is it true? Is it not true that every day, we do treatments, administer pills and medications, all in an effort to keep her alive? Clearly it is. If we didn't do treatments, her lungs would deteriorate at a quicker pace than they currently do because of cf. If we didn't administer meds and all those enzymes to help her absorb food and nutrients, she would starve. So yes, I guess Frank was right, a child with cf must be kept alive.

Wow. . .

that's really a hard bite to swallow.

Thankfully, today, 4 years later, I don't look at Olivia as simply being kept alive, largely in part because aside from the treatments and pills, she is doing okay. Vastly in part because even without a cure, things are so much different, better for a child born with cf today than 30 years ago. She doesn't struggle to breathe, she doesn't struggle to run and play and just be. So I guess I choose to look at it differently, look at it like she is living, really living and being a little girl, one who must undergo different things than many in order to live but still living. After all, I guess I believe that each day is a gift, we aren't promised a tomorrow and although I don't have to take meds, do treatments etc. I too need to be kept alive on a daily basis, certainly not even comparable to the extent of Olivia but . . . still mulling this one over I guess.

It is kind of crazy that this book was written in the 1980's, so long ago but still there are so many things that still play out in a cf life today. Scary really. We've heard, been informed and seen the remarkable progress that's been made. We believe in the hope of a cure, really believe, but yet there are so many similarities that it's hard to wrap my head around it all. I know the disease has radically changed, huge advancements have been made, life expectancy has surpassed that of merely grade school to near 40 years of age now, so much more is known about the disease, a control for some mutations has been found . . . but yet . . . here we are. I was told that CF is a very complicated disease, of that I have no doubt. Our pulmonologist in the NICU told us that we as a cf family living with cf would know more about it than his team did. I believe it really, I can only imagine when the breakthrough discovery was made to target the gene responsible, the hope that a cure would soon follow was almost like a guarantee. Yet to be 30+ years later and just now finally discovering the control and the cure for some mutations, to say CF is a complicated disease, seems like a vast understatement.

Am I glad I read this book?
Yes and No - yet absolutely all at the same time. In this isolating cf life we live, it is surely a minority of folks who know what it's like. I've never met another CF mom face to face to have the pleasure of discussing what this cf life is like, to discuss all the things we do each day that are just "normal" to us, to have someone to sit down with over a latte and simply talk about our cf lives as if we are talking about the weather. To sit last night and read raw thoughts, truths, realities and to have some of the same thoughts I've had staring me in the face from the pages of the book well, it's almost a relief really. To know another cf parent out there has thought some of the same thoughts that go through my head and my train of thought as I cope with the reality of this disease is eye-opening and a source of comfort.

For the same reasons Frank Deford spoke of so long ago, for the same "real wish" that Alex had that has yet to come true, it's why we fight. This is why we donate, this is why we ask others to donate as well. There is great hope but for all of that, this disease is still here, it's still awful, better yes but still here. As a CF parent today, I feel like I owe it to all those who have lost children to this disease, to all those that have suffered because of it so much more, to all those that have laid the groundwork to get us to where we are today. Yes, I owe it to them to keep the momentum going, to give it my all, to see this through to the finish line, so that we continue to progress, continue to defy odds, to end this disease and to really make it be "the polio of the past". We need to fight like mad to advocate, raise awareness and raise money to make the cure a reality. They are so close, I've read it, spoke of it, been informed of it, we have to keep going, we have to do everything we can, for my dream, for Alex's one "real wish", we need to find it. Now is not the time to act idle, to give less, it's the time to step up, give whole heartedly so that it isn't another 5, 10, 20 or 30 + years spent waiting on that cure.

Perhaps to an outsider looking in, cf doesn't seem all that bad today, compared to 30 years ago. Maybe not as grave, dismal or deadly anymore. Not the case. People continue to die from cf. Infants, toddlers, children, adults. Not only do we deal with what cf means for the individual but we also must not forget what it does to the others involved. As Frank wrote about, this disease - CF, truly does affect every aspect of a family, every individual in the family unit. It has the potential to rip family's apart, it creates anger, pain, resentment, hopelessness, despair. It makes you question so many things, what you know, your friends, your family . . .What is the percentage of marriages that fail due to a child being born with a disease? Seems so odd really, you'd think something as devastating as an incurable disease would bring two people closer as they muddle through it together . . . but the statistics are there.

Truthfully, I see it. Jeff and I live this disease together, day in, day out. For us, we are two in the same, we are Olivia's parents, we know what it's like, neither of us needs a reminder from the other about all things cf, we have many of the same thoughts and fears regarding cf. We both really live it, regardless of who is the primary caregiver. It's hard. At the end of the day, I don't want to "burden" Jeff with the worries, the realities and the crummy stuff that go along with cf day in and day out after he's had a hectic day at work. I'm sure he feels the same, so we don't discuss it much, we don't talk about the what if's, we don't dwell on that which we can't change.

Perhaps some may say that's unhealthy, perhaps some may fear we will drift apart, perhaps some may say we need to find someone to talk to about it, tell us we need to get out, get away, but to that I say no. Because instead of focusing on all the things we can't control, instead of telling someone how I feel, what I think, (that's what this blog is for) to which unless they have a child with cf, will never fully understand, I don't feel it'll do any good. It's a waste of precious time. I choose to spend that precious time with my family/friends. We accepted cf into our lives, we had no choice - but we not for one minute let it define us, define our day, or consume us. So the time we actually get to spend together when Jeff's home we choose to channel into positive time. Oh yes, there are times of fear, anger, sadness, pain that we deal with as they come but when things are okay, we make the most of it, we laugh, we love, we cherish, we smile. We live.

Jeff and I must work hard as a unit, everyday. We are parents and to survive parenthood we need to stay a united force, but we are more than that, we need to be there for each other always because he is the only other face I see, the only other person I truly know who gets what it is like to be me, to wear my shoes, to live a cf life, to be Olivia's parent. He is my best friend, I love him so deeply, and because of all that we have been through, continue to go through and the fact that we have so much more that our marriage is built on than love, we will not fall to the statistics of a couple torn apart by a disease. Thank God for that. I can't say it'll always be easy, I can't say it won't get more difficult as this disease progresses and we view things differently, but I believe we are both determined to stay united. We need each other, we are not complete without each other, together as two we are able to get through all that we do everyday, no one else will ever understand better than us what it's like to live this cf life of ours.

Jeff and I are the two directly responsible for the genes our daughter inherited. Those big blue eyes she has that pierce into one's soul - those are Daddy's. What about her smile or that button nose, maybe those are from me. And what about the crap genes that gave her this crap disease? Yep, those are from Jeff and I both. I thank God for that, thank goodness it takes 2 parents to pass on the genes. Can you even imagine the blame, hate and fury that would ensue if only one parent passed on the gene for this disease? What does this disease do psychologically to those that live it day in and day out? To the sibling that doesn't have CF but rides the journey faithfully beside the sibling that does? CF surely can be a disease that tears apart a family and destroys the individual with it. More than a double whammy all around. This disease would straight up swallow the family whole, I seriously have no doubt, if you didn't fight it like hell and have faith in God. For all the hope, for all the medical advances, for all of that, the fact remains; this is a progressive disease, there is no cure yet. One must accept death when they accept cf into their lives.

Olivia is okay right now but she has an incurable disease, a progressive disease, a disease that wants to destroy her, is destroying her on the inside. Outside you wouldn't know, she looks healthy but for everyone that says "Oh she looks so healthy, so good", to that I shake my head and say, "well she isn't". The damage is continual, it is progressive, there is nothing we can do to stop it except to put Olivia through the rigamarole of treatments upon treatments, medications upon medications to keep her from dying. Is that living?

There are many things I take away from this book but the one thing still raw in my mind is when Frank spoke about Alex's weight, or lack thereof and the doctors telling them "Alex seems to have lost her appetite" To which Frank writes, "Eating like everything else for Alex, had become strictly a matter of staying alive." That hit home, big time. Food, weight, the struggle upon struggle to put on an ounce, to gain a pound, it's been our biggest battle with cf. I agree wholeheartedly with that statement, to always have to "take another bite, have another drink, eat a little more" eventually it too becomes a chore, all the fun is taken out of it, just another thing to do in the ever increasing measures one with cf must do to stay alive. Gosh, if this disease isn't a box of crap sometimes and to think I get frustrated with Olivia when she doesn't eat enough, how awful of me. Look at every darned thing she endures every single day, every treatment we put her through, all the "encouraging" to eat more. No, it's not quite unfair enough that she was born with this disease but also that we must put her through so many other things just to not die. Today, when she asked if she could be done with breakfast and later lunch, I simply asked, "Are you full, did you get enough to eat?" She replied yes, and I said, "Okay, you can be done." She looked at me and with all eagerness and happiness and said, "I can?" For that alone, I thank Frank for the words he wrote on those pages so long ago. I thank him for sharing Alex's life, so that today, I opened my eyes, I didn't push Olivia to eat more, didn't force her, I didn't make food be another struggle, a mere measure to stay alive. Today, I let her just be and that is good enough. There are huge physical effects as a result of cf, but the psychological ones, not happening today and I will try my darnedest to not implicate them tomorrow, or the next day . . .

Alex lived until she was 8.

8. years. old.

Frank writes, "Old people die with achievements, memories. Children die with opportunities, dreams."

It's so scary that how many years later this disease remains so much the same. If there ever was a disease that needed a cure, this is it. The #1 genetic killer of children. A disease that wreaks so many parts of a body. Of cf, Frank writes, "Inexplicably, the disease attacks not only the lungs but other disparate parts of the body: the pancreas, the major digestive organs, and in males, the testes. So it undermines breathing, eating, reproduction - all of life itself."

Plain and simple, for so many reasons. WE NEED A CURE.

How will we turn out as a family?
What does this disease mean for my 6 year old son?
How will he come to terms with the reality of cf?

Being a mother, a caregiver, the primary caretaker of Olivia, knowing all that I now know about this disease, I don't know how in the world anyone can not want to help these children. Once someone is "gifted" the knowledge of what CF is, how could that person not want to help find a cure for this disease? To put an end to it, to offer the promise of a cure, for Alex's real wish and so many others' dreams, including my own to come true.


*deep breath*

Reading this book, opened my eyes. It made me see CF through yet another lens, one not looked through before. Hope is not lost, I'm not bitter. This is my life, I accept it and embrace it. We roll with it the best we can and the only way we know how. I honestly, truly do believe a cure is out there, it really is, the impact of this disease will change drastically over the next 5 to 10 years. I have hope, I will always continue too. I have faith, I know that all is not lost when our time here is done. If anything, this book has pushed me further, reiterated the importance and the pure bliss I will feel for fighting like hell to spread awareness and raise money for a foundation that will radically change what cf is, what it means. The day that cure is found, announced, can you even imagine?

Won't it be great?

Won't the utter bliss in finding that cure come from knowing that we helped find it, that we gave what we could when we could, that we were part of the journey? I get shivers just thinking about it. Alex Deford never got to see her real wish come true. So for Alex, and all the other lives lost way to soon to this disease, we will continue to fight, research and donate so that someday her wish and my dream will come true.

Friday, January 24, 2014


I was super pumped to get this email today regarding our team's status in the Climb for a Cure coming up in just 2 weeks from tomorrow! It's not often that I see our team name anywhere so it was great to be recognized.

Currently we are sitting in 2nd place with almost $3,000 raised thus far. It's a close call for 2nd and I hope we can hold on to it! Last year we held on to the #2 spot finishing with around $11,000 raised for the CFF on behalf of Olivia in this event. I'm hoping we will get some more donations over the next 2 weeks and hold on to that #2 spot again this year. #1 would have been super awesome too but it looks like Team Briley is doing a fantastic job and will be very, very hard to catch.

Thanks again to all who have joined us to climb and for every single one of you whom has donated precious dollars to this event.

Wednesday, January 22, 2014

My Shoes

No doubt you've heard the sayings about walking in someone else's shoes. Even so, I firmly believe no one can ever know what that is truly like, for we are all individuals with our own perspective but we can attempt to at least understand.

Well, this is what it's like to wear my shoes, just for a morning,

Pull myself out of bed. Walk downstairs, greet the kids, Olivia and I proceed to let the dog out and feed her. Olivia considers our soon to be 10 year old dog her dog, she absolutely adores Shelby and insists on feeding her every morning. I hope Shelby has a good few years left in her. After that's done, we scrub our hands, I pull out the neb cup, mask, albuterol, saline solution, needle and vial of mucomyst: dispense it into the neb cup and assemble it all together.

Take the neb cup into the living room, ask, tell and sometimes plead with Olivia to put her vest on and start her treatment. Usually she doesn't resist, some mornings however, I get a "not yet" or an "I don't like my stuff", and on those mornings, after some persuasion and matter of fact stating that she must do her treatment, we finally can start.

Get Landen set up with the tablet, turn on an episode of Paw Patrol, (currently Olivia's favorite show, to which she can about recite word for word every episode on our DVR as this is the one and only show she wants to watch when she does her treatments) we then sit down beside her and do the first treatment of the day.

After the 30 minutes are up, then and only then, do we proceed to the kitchen to scrub our hands and eat breakfast together.

Serve breakfast. Dispense 11 pills onto Olivia's breakfast plate, remind her to swallow them and proceed to encourage her to eat her breakfast. Some days she eats fairly well and quickly, others require more coaxing, pleading and telling her why she must eat her breakfast.

All this,

every single day,

every single morning . . . and it's not even 9:00 am yet.

There are never any free passes, we do this everyday, no matter what, without fail. It's not a choice.

We repeat this treatment process, if we are lucky and on a "healthy streak", one more time in the evening, if it's a sick spell, it's at least 2, if not 3, more times.

This has been our daily morning routine for the past, oh 1,575 days or so, give or take, day in, day out, 7 days a week, 365 days a year.

Regardless of where we are, treatments are  the first thing on our to do list in the morning.

Some days I wonder . . .

wonder what it would be like to just get out of bed, eat breakfast and get on with our day with no other messing around.

Many days I wonder and fret over how in the world we are going to fit this rigorous routine into our mornings when Olivia ventures off to school in just another few years here.

Every single day, I wish there was a cure.

A cure, so that I could throw out all the medication and equipment that consumes a full cupboard in my kitchen.

A cure so that I could get rid of the heavy and bulky vest machine and nebulizer that are permanent staples under our living room ottoman that I built custom just so I wouldn't have to put the stuff away numerous times every day and take it back out. Oh what a glorious day that would be, I can only imagine.

How I wish Olivia had 1 pill, just 1, that she could take once or twice a day to free her from all the havoc and all the weight that this disease puts on her every single day.

Wouldn't that be great?

Honestly, I can't even imagine that life . . . a life that is free of all that we've been doing to combat this disease for the past 1,575 days. We know no different for Olivia, to imagine her not having to do all she does, well really, it's unimaginable. Golly, how I pray the day will come.

How I pray that there will be a light at the end of this tunnel, how all the items on my "things to do when a cure for cf is found" can be crossed off, a day when there is a cure, a day when Olivia doesn't have to ask me why she has to do her "stuff".

Man on man, what an amazing day that would be.

My faith, my hope and my trust lies in the CFF finding that cure, finding that pill that will change what this disease means for Olivia. I don't know if it will happen, I don't know if we'll ever be able to rid ourselves of the treatments and handfuls of pills, I don't know if Olivia will ever be free from the burdens of this disease. No one knows for sure, as with life itself, there are no guarantees. But I continue to have faith, hope and a dream that one day, one day soon, one day in Olivia's lifetime, a cure will come.

Until then . . . and for now . . .

we do what we can to fight this disease with all the arsenal we have. We do her treatments religiously and without fail, we make sure she has the best CF care possible, all the meds and equipment she needs. We fight for her, we fight for what we believe is right. We take a stand and do what is best for her as an individual and for us as a family, regardless of if we have to fight with the insurance company or our medical team to do so. We try to make the most out of each day and fit CF into our lives without letting it consume.

Our journey could be worse, I know this, I read it. No two cf journey's are alike, they are all different. Thankfully, Olivia has never been hospitalized, never been on iv's, so many things that could have been. We are blessed, I believe this. However, I do know, this disease is progressive. With each day that we are blessed with another tomorrow, it's another day that the disease progresses, it gets worse. Always, I am waiting and mentally preparing for that other boot to drop, the day when she cultures something nasty, ends up needing that ever lurking g-tube, ends up on iv's, ends up in the hospital . . . I pray those days never come, but I'm also realistic and will never forget the words that it's not a "what if" it's a matter of "when".

So we do what we can everyday with treatments and meds to fight this disease the only way we know how,
and we fundraise like madmen, we donate, we climb, we recruit, we inform others, we advocate for the CFF to bring in precious dollars to make that cure a reality. Regardless of how tireless we try, regardless of how often we may sound like a broken record asking for others to join us or donate, maybe to the point that some are sick of hearing it, we continue to do it, because it is something that we can do to fight a disease that at times can feel very dismal. What we do day in and day out to care for Olivia and advocating and raising money for the CFF are things we can do to help our daughter, to make her time here be all that it can be. As parents there isn't one thing we wouldn't do for our children and it is for that reason alone that we continue to climb, donate and ask others to join us and donate if they are willing and able.

So, a big thank you to everyone who has joined us in our fight, everyone who donates to the CFF. A "thank you" can never do justice to show how much it means to us. As we gear up for our next CF event, the Climb for a Cure, many thanks to our team and donors, we honestly appreciate it more than you will ever know and more than we can ever express.

Friday, January 10, 2014

Emma's Bracelets

Acts of giving . . . acts of kindness . . . acts of helping out those in need. It warms my heart, it's something I try very hard to instill in my children because it is so very important to help out others if you can and are able, no matter how small or big it may be. I want our children to grow up with charitable hearts.

After all, I know firsthand what it is like to be on the receiving end of a charity. My daughters health, the medical care she receives, the knowledge about this ever changing disease and ultimately the key to prolonging her life and finding a cure for CF . . . is and will be, the result of a charity - The Cystic Fibrosis Foundation (CFF). The feeling of knowing that her future and what this disease means for her rests in the hands of the CFF, well that's a feeling I can't quite explain.


although I can't put it into words, it is with great honor, often a heavy heart, but always full of hope, that we support this charity 110%. We donate what we can when we can, we fundraise and encourage others to support this foundation in honor of Olivia, and all those that battle CF. Our goal is to help raise money to help the CFF put an end to this disease, to radically change the impact it has on her and make our dreams of a cure come true.

So, stepping down from my soapbox now, regardless of what you choose to do, if you choose to support a charity or not, there are so many out there that do wonderful things and make a difference in the lives of many and are definitely worth giving to.

In the years that we've been fundraising specifically for the CFF, we've tried many different fundraisers, participated in different events, trying anything and everything to raise as much as we can for the CFF. In 2014, we are going strong, starting the year off in February with the Climb for a Cure. We hope to raise a boat load for the CFF and have a big team participating in the event. Last year we were just a little over $1,000 shy of being the top fundraising team in our state for this event, I would absolutely love to claim that #1 spot this year . . . we'll see how it goes.

So, our big fundraiser for the CFF for 2014 will be the Climb for a Cure. You can sign up as a member of our team and/or make a donation to the CFF in honor of Olivia by visiting my Climb for a Cure homepage.
Thank you to everyone who has joined our team thus far and/or made a donation in honor of Olivia!

Last evening, I received an email from my sister with this photo of my niece Emma (just 7 years old) holding this Team Olivia jar with a few precious dollars in it.

My sister Amber, went on to share with me that Emma, has taken it upon herself to fundraiser for the CFF in honor of her cousin Olivia by selling rubber band bracelets. She has begun by selling them to her friends and classmates at school. Amber said she was a very "proud mom", and she should be, the act of giving, of helping others, coming from a 7 year old, is absolutely amazing. Not only is Emma selling bracelets to collect donations for the CFF but she also put her own allowance in her Team Olivia jar to donate to the CFF.

Emma will be making these rubber band bracelets all by herself, only recruiting her mom Amber for help when she runs into a challenge. The cost is $5 per bracelet which will be donated directly to the CFF. Emma is taking requests now, she will be bringing some along and selling them at the Climb event and she also plans to sell some in the spring at the Dreams for Olivia event. If you would like to support the CFF, Team Olivia and show Emma that what she is doing is a pure act of kindness by purchasing a bracelet, you can contact my sister Amber at aj.johnson1065@gmail.com for further information.

I am speechless really.

Never, would I have chosen to have my daughter be born with this disease.

Never would I have chosen to support the CFF as much as we do, before we had a reason to that is.

Unfortunately, Olivia being born with CF, wasn't a choice - we aren't given that luxury in life. For as much as I wish this disease away, for Olivia to be free from the treatments, the medications and the doctor visits, the silver lining in this situation is that all of us have been gifted with the knowledge of knowing the importance of giving unto others. My children, our family and now 7 year old Emma, know the importance of giving and helping others and well . . .

that is beyond amazing.

I strive to always see the light at the end of the tunnel, to continue to have hope because without it, we have nothing, and although the reason behind why we support the CFF as tirelessly as we do, knowing our daughter has a chronic, progressive, life shortening disease isn't in the least bit "good", the fact that we understand the goodness in giving unto others and supporting charities, well there is definitely good in that.

Thanks Emma! Your generosity and willingness to help your cousin Olivia see many, many more tomorrows is without a doubt, absolutely amazing. May you be successful in your fundraising efforts, I know we can't wait to get our bracelets!

I also want to throw a shout out to the other youngsters on your climb team. Our nephew Austin has been our youngest member since 2011. He has been running up all 1280 stairs, literally, for the past 3 years, 2014 will be his 4th year and boy is he fast! Our nieces Alexis & Aleah also join us from many miles away in this event and have done fundraising through their friends and family as well. Our other nieces & nephews, Braelyn, Carter, Makayla, Mason & Matthew are still a bit too young for this event but I bet they too will climb with us when they get a bit older. With the new guidelines put forth by the CFF due to infection control policies, Olivia is not allowed to participate in this event. She will however be on the outskirts of the event, waiting to attend the after party to thank everyone for coming. Last but not least is faithful brother Landen, he's 6 now and is beginning to understand and question a bit more what cf is and what it all entails. As he was sitting beside me and saw the photo of Emma with the donation jar, he was curious and the wheels started spinning as he asked me what he could sell to raise money for his sister. He says he thinks he could climb all those stairs, telling me "Well, I can try". We'll see what we can come up with for him, regardless though, he is Olivia's #1 fan and biggest supporter and rides this journey with her every single day.

Thanks to all of our family, friends and co-workers who support us, providing us with the hope of a better tomorrow.

Friday, January 3, 2014

A New Year

I've mentioned before how there is never enough time in my day to get everything that needs to be done, done, right? That life is crazy, hectic, busy and gets in the way and time just keeps on ticking by? Well . . . even with the ringing in of the new year (Happy 2014 y'all!), that's still the case around our household - too many "to-do's" and not enough time but it keeps things interesting and fun all at the same time so we roll with it.

Clearly as a result, life on the blog has slowed down, the updates aren't posted as often . . . but instead of promising to do better, I find that it's actually good because when the updates aren't as often, I find in our case, it goes with the saying "no news is good news." When things aren't going so great that is when the posts fly, when I have rants and rambles that I need to share with someone, anyone and don't want to have the hubby be the brunt of it all over and over again - a post will surely ensue, but when things are okay or good even, I remain quiet . . . most certainly not because good news isn't worth sharing, it most definitely is, but rather because we are busy living . . .

. . . busy doing fun things . . .

. . . busy enjoying soaking up life's good moments.

These good times are moments when I'm not confined to the couch sitting in front of the laptop blogging while Olivia is doing added neb/vest treatments during bouts of illness or times when we aren't spending countless hours sitting at the table in food struggles  . . . times when we can step away from the computer and tv and just do life. It feels good . . .

Thus, as we rang in 2014, I can't complain at all about 2013. We had a good year, we did many fun things, we went to DisneyWorld for goodness sake . . . there were many positives for us throughout the year. As I look back, we did have our struggles, struggles with Olivia's weight, times when it felt she was sick more often than healthy but . . . time heals and things are good now, so all those struggles of 2013 that we were fortunate enough to overcome, seem very small. Given that so many others have gone through so much more this past year, all in all I'd say we had a good year and look ahead to what 2014 will hold in store for us.

Olivia currently is doing well despite all that CF throws at her. The older she gets the more I can "reason" with her as to why she must do what we encourage her to do in order to stay healthy. Of course the struggles will continue but for now, things are okay. We had a very enjoyable Christmas spent with family and the pure joy on the kids' faces on Christmas morning,

there is nothing better. . .


As we rang in the new year, no resolutions were made on my part, just the same dream and wish I've had for the past 4 years now, a cure. One of these years, it will come true, I can feel it, I have hope. With that hope, comes the hard work of assisting to make it happen - thus we gear up for our 5th year in the CF Climb for a Cure. 

I hope it is our best one yet. With it just over a month away, I better get busy . . . fundraising . . . recruiting . . .  training - doing all that I must do to ensure we are as successful as possible to secure funds for the CFF in honor of Olivia to make that new years resolution come true . . . someday, all while continuing to live it up while things are good.