Wednesday, February 24, 2010


UPDATE: April 22, 2010

Because I am STILL getting emails about this post, and it's unintentional controversy...I am removing it. I still have the document saved if anyone is interested.

But I will be leaving up the happy ways to donate!

Fun ways to donate

  1. $27: Gavin was born on 2/7 2009
  2. $7.10: Gavin weighed 7 pounds 1 ounce when he was born
  3. $38: the current lifespan predicated for those with CF is 37 years, screw it, make it 38 so we can beat that battle
  4. $74: DOUBLE the life expectancy for CF…Gavin’s going to get there
  5. $1: Gavin has beaten this disease for one year already
  6. $81.72: the number of miles, one way, we drive to our CF clinic (per Mapquest) at the University of MN
  7. $2: Gavin needs his two lungs to remain healthy to beat this disease
  8. $60: the number of minutes we spend each day on breathing treatments
  9. $5: The number of pancreatic enzymes (pills) that Gavin takes with every meal to help him digest his food correctly
  10. $100: our dream is for Gavin’s lung function to remain at 100%

CF walk (please click on the link to donate)


  1. I like your fun ways to donate. Would you mind if I copied and did something similar?

  2. This may seem unwanted, or out of line, but I beg you to not conceal from Gavin that CF may kill him. I'm unclear if you would do so or not by not telling him it's fatal... but I know a number of cystics who had a VERY rough time because their parents didn't tell them that CF was fatal. That learned from playground teasing, or an encyclopedia, or a news article. A pretty devastating way to learn, that really damaged some people, and ruined the trust bond amongst many children and their parents. The new therapies on the horizon are very promising, but it remains that CF will kill, eventually. Parents who didn't tell their now older children thought very much like you that CF would be beaten before it became an issue, and it very well may be, but it very well may not be.

    Vertex is the greatest hope in a long time, but it is still not a cure, and it's unknown what the long term battle with CF will look like with it.

    Yes, CF sucks. Yes, we need to fight. But hiding the truth, as it now stands, about CF, doesn't make you, or Gavin, or any cystic, any less of a fighter.

  3. I can say that the only way to handle everyday life with out little CFers is to think exactly like you, I will never use the "F" word either its just not an option. And for others that are not as optimistic as we are, you are the ones that make our fight even harder...

  4. I'm sorry that you feel that being realistic makes your fight harder Kristine. That somehow we are on different sides in facing the same monster. My heart breaks a little for your young CFer... as it does every time that I hear a fellow cystic being withheld information about the monster that lives within them.

    I was raised by parents who felt that the most effective way to help me deal with CF, and all of its realities, is to NEVER hide anything about CF. To never shy away from the fact that its possibility of killing me was very high. And I can't thank them enough for that. From the time I was very little, I could ask any question I wanted to about CF, and know that it would be answered truthfully.

    I was maybe four or five when I started asking about my future. About maybe what CF meant in that. Very, very young to start asking those questions. And my parents had a choice. Hold on to hope that CF would be cured before my mortality came into question, let me know that the monster within may very well kill me. Sure, this was the mid 1980s, and the lifespan prognosis for CF was very different, but the ultimate outcome was not. This was the time they were finding the gene, and proclaiming that a cure was 5 years away, 10 at most. Surely their very healthy child, who yet needed so much as a nebulizer or a hospital stay could hold on for that long. Surely they wouldn't need to let their preschooler know that she lived with a ticking time bomb. But they did. And I praise them for that. They let me know that CF was very serious, and it was a very real possibility that someday I may get very sick, and that someday CF very well may kill me.

    I know. No parent would ever want that conversation. I don't really remember any of this talk. But I do remember always knowing that CF may mean a shortened life. That keeping healthy, going to the doctor, and fighting for a cure were all ways that I could look this fact in the face. It made every treatment, every doctor's visit, and every day worth more, because I knew how vitally important they were.

    When I was eight, I learned that a friend, my age, had died of CF. The reality of what death, CF, and everything came crashing in. It was a VERY rough time, but something that I came out the other side much stronger... because my parents were willing to be there, talk about mortality, and acknowledge that there was no way to know what mine, or anyone's future may bring. I emerged from this rough patch a short time later, willing to do all I could to fight... and knowing what was at stake if I didn't. I didn't have to experience years of being unsettled about not knowing why I did my treatments, like some friends whose parents not only hid fatality, but the very existence of CF from their kids. I didn't have to feel like I couldn't trust my parents because they hid something so vital, as far too many people I know did because they found out on their own what CF meant. I didn't have to be shocked by another kid proclaiming "My mom says CF will kill you", as a sickening number of cystics have over the years.

    Not admitting that CF is a deadly disease does not change the fact that kids, young kids, kids who are not even teenagers, still die of it today. It's not as common, but it still happens. It does not change that there is not a cure, it does not change that a life is irrevocably altered by CF. Understanding fatality does not decrease the fight, does not make life less lived, and does not end all hope. In my mind it increases all of those things a million times, because all cards are on the table.

  5. First off, I love comments on my post. I really do. I love all of the new people I have met through blogging. CF parents, CFers themselves, and the many others that I have grown to love.

    And today, what I was trying to do was to be encouraging to my son and to our family. To prove to him that a diagnosis such as CF does not need to define his life.

    And that I hate the word “fatal.” Not that I don’t know what it means, and not that I don’t understand what CF may/may not have in store for my son.

    Am I in denial? Hell no. Every single second of the day the definition and stories of CF are on my mind.And I most definitely WOULD NEVER HIDE THE FACTS OF CF FROM MY SON.

    I hate a word. The word is fatal. I hate what it means to me and what it has meant to my life. IN MY OPINION.

    If you even knew me, you would know that my father died from a “fatal” lung disease in 2005 called Pulmonary Fibrosis. I watched an independent strong man dissolve into a man who couldn’t speak or go to the bathroom on his own. I have every right to hate the word and choose not to use it. I can fully describe CF and teach my son about CF without using it.

    If you even knew me, you would know that my grandfather was a doctor, and from a young age I was fully aware of research studies. And I have been fully aware that research studies, and researched medications do not always make it through the trials and FDA approval.

    But, what will I do if he asks, “Mom, will CF kill me? Is it fatal?” My answer? “Yes, it could. It is a disease that does not have a cure. But there are a million different reasons why people die everyday. Disease. Tragic accidents. Personal choices. Not one person in the world can predict what will end their time in this world.”

    And in the words of another CF mom’s husband…”Life is fatal.” I get it, I do…so don’t you dare insinuate that I would ever hide any facts from my son. I may not have lived a lifetime with this disease but do not belittle my parenting.

    I said I hate a word. And that I won’t use that word to describe his disease. I never once said anyone else is less than a fighter. I never said I would hide anything from my son. Don’t ever put words into my mouth that were never said. How dare you.

    I can accept the fact that my son has a disease without a cure while simultaneously refusing to call it fatal. I can fully teach my son about his disease without using that specific word.

    I understand that CFers and parents of CFers often do not see eye to eye and am not trying to alienate me, or my son, from that much needed community. But I am doing my darndest to raise my son to be the bravest, strongest man around and until you are living in my shoes, don't tell me how to do my most important job in the world. And most importantly, please don't assume.

  6. I'm sorry that you feel like I'm attacking you. I'm not. And I never said that you were any less of a fighter. I was simply begging that you do not hide that CF is fatal, and if you read the first few sentences of my first comment, I even say that I'm not sure that's what you are doing.

    I realize it comes across that I'm telling you how to "raise your child". That's not really my intention. My intention is to educate the dangers of not being 100% realistic of all facets of CF, even ones that are unpleasant. That some very real damage has been done by other parents who refused to talk about mortality. Didn't use the word fatal.

    I commend you for knowing that Gavin will someday ask if CF is fatal, and being able to answer him that it very well may be. I was NEVER attacking how you raise your son, or making it a "cystic vs. cystic mom" fight. I'm sick of that turf war. I was simply sharing my experience and my point of view. And in my view, refusing to use fatal to describe CF, when it is a reality, is more scary than the word itself.

    Again, I was never belittling you. Ever. I typed something heartfelt, something that I feel strongly about. And I did say that I was not sure if you were going to share the fatal word or not with Gavin. So please do not act like I didn't. But saying that you hate the word and refuse to use it in describing CF to your son? It scared me. For your son. For you. I wasn't scared that you were in denial, but instead that some very real hurt may be caused to both you and your child by not being 100% realistic, and that means saying that CF is fatal.

    In closing, I did not post to hurt you. To belittle your parenting skills. To accuse you of not being a fighter. Of not being any less important in CF. I said none of those things. I hoped that sharing some perspective would help. Apparently I only angered you, and I'm sorry for that, but I will never shy away from trying to let parents know that they are the most important person in a cystic's life in understanding CF is fatal, and coming to terms with that.

  7. Jen, I hope you know that I greatly respect and admire you. So I hope you do not take offense at this comment but rather, see it as another mom's opinion.

    A disease that is currently incurable *is*, by definition, fatal. Sure, there's a small percentage of folks with CF who live into old age, and there are others who die in car accidents, from cancer, or what have you. But the vast majority of people with CF die of complications from CF, transplant, etc.

    It has been my experience that it's most beneficial to Ricky to be honest with him about the nature of and likely outcome of his disease -- and at the same time involve him in his medical routine and hope for the cure. Obviously I didn't share everything with him when he was little, but I started to as he got older.

    I believe it would have been a diservice to Ricky not to tell him the truth about CF. It would be very likely (and I've heard of it happening time and again) that a peer would break the news to him, and not in a nice way, if he did not already know and was not already prepared with information about treatments and potential cures.

    Again, just one mom's opinion. Keep up the fight!

  8. Oh Jen, I think you are amazing. Without assuming anything, what I took from your post is that you refuse to let a word define your son's life. It doesn't mean you're not realistic about his future.. good or bad. Words are powerful and certain ones can bother the most realistic person in the world.

    As I've told you before, Jaleah gets SSI because of her very low birth weight. In this country, under 2 pound 10 ounces qualifies you as disabled. Every piece of mail we have from them says, Disabled Child. When I call in about something, I always hear that word in describing her. It rattles every part of my being because she is abled in every sense of the word and it bothers me greatly to hear her referred to as that. It's not who she is. It does not define her. As much as the word bugs me, I'm very grateful that such a program exists because it's helped me to be able to stay home with her and not expose her to daycare germs. But I will never use that word to describe her, no matter what other words I have to use to describe her situation.

    Not that this is necessarily the same thing as yours, but I can understand how a word can affect you and you have every right on this earth to choose not to use it. It doesn't mean that Gavin will be in the dark - I absolutely agree that you'll be able to explain CF to him without using that word. And I think you are doing a fabulous job as Gavin's Mommy!

    And on a separate note, I love the fun donation ideas.. I did the same thing in a post last month. It's extra special to see donations come in that have meaning behind them. As soon as I have some money, I'll be making a donation based on your numbers :) Love you!

  9. WOW. I loved reading these posts/commments. Jen...I think you wrote a great post. And truthfully, I can't vividly remember my parents telling me it was a fatal disease when I was younger. I'm not sure how I became aware of it (obviously it wasn't a big ordeal, because I can't remember). But when I did know what CF could possibly do, I always had an attitute that there would be a cure and that I would not die from CF. Of course it became more of a reality when I became sicker. And like Rebekah said, currently there aren't many people well into their old age (50s and above) still living with CF. I always knew that "We/God" would win this battle, and not CF.

    HOWEVER, Gavin is young and he doesn't have to know that now. Sure, he will ask, and like you said, you will tell him (how you phrased it above); but I don't see it as hiding anything from him if he doesn't ask. I don't agree with hiding anything about CF from a CFer (i feel like they need to be treated normally, which means they should know everything); However, there is a perfect time for everything. When he is able to understand CF and everything it entails, he will ask. But I truly believe, since he has the geneotype G551d, studied using the new drug, Gavin will be cured SOON. And that is such a blessing to know. This drug may not be for every CF (at least not now), so I'm so excited that Gavin has a possibility of being cured.

    BTW: i love your creative idea of getting people to donate! Awesome!

  10. This comment is from Jen's mom. She is, and always has been, very passionate about her beliefs. This is what makes her so special, and what makes her such a great mom to our wonderful Gavin. Everyone's different experiences make them who they are and give them the perspectives and opinions they have. Our family had already weathered some very hard trials before Gavin's diagnosis came along. It is these experiences that give Jen both the strength and perspective to deal with Gavin's CF. She also has a wonderful, supportive partner in Casey. There is no right way for everyone, no matter what anyone thinks. This whole CF community can learn from each other and decide what works best for each family, carefully weighing all the input from others. I don't think anyone is hiding their heads in the sand here. I've enjoyed the discussion. You go Jen - you know what is best for your child. I so admire you. And I don't tell you that often enough.

  11. Jen I truly believe you are an amazing woman, and an amazing mother. the few times I've gotten to see you with gavin have been a pure blessing; what I'd aspire to be as a mother and little family. (That's part of the reason i want you in my wedding -- you are so very important to me, and a role model to ME!!, even if you are younger). Everyone has a way of raising families, that's the beauty of bringing life into this world and the beauty of being different from everyone else. You are the strongest woman I know, and when it comes to your son, you are something of a super-charged super-hero action figure. Haha. Anyway, all that has been posted in response is nothing that people didn't already know about. The way each person responds to the illness is their own right. What's most important is that there is an abounding love out there, and that everyone wants to see a cure develop and happen for CF way sooner than possible. And if we all try together, isn't that the most important part? The rest is just details...