**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.
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.
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.