We found out that our daughter Katie had CF on September 30 2008. Katie was 17 months old at the time. We were devastated. We were afraid. We were concerned for our child. We worried if our other child might have CF. We wondered what the future would bring. We wondered if we would have any more children. We had a million questions.
OVer time, we got on our feet again. We spent time at the CF clinic. We met with other CF parents. We researched the disease. We spent lots of time on the internet. We read books. We watched movies. And eventually, we got to the point where we felt like we understood what we were dealing with.
To seasoned CF veterans, I’m sure we’re still “rookies”. But, we are insiders nonetheless. And we are recent insiders. Thus, we have a unique perspective and a unique chance to help others.
I’m compiling my notes into what I envision to be a book that will provide an overview of our first year living with CF. It will share our personal story. It will share resources that we’ve found helpful. It’ll explain how we’ve learned to navigate the health care system and how to optimize the help that is available to CF patients and their families.
Ideally, I’d like to provide a handbook that will comfort other families that have just learned that a loved one has cystic fibrosis. And, I’d like to provide context for those that are on the periphery of cystic fibrosis – friends and extended family members of those affected by CF.
Who knows… maybe I’m crazy. Maybe I’m overly ambitious. But, I looked high and low for such a book when Katie was first diagnosed, and, I couldn’t’ find that book. If I could provide something even remotely helpful, then I will have accomplished my goal.
Here’s the basic outline of the book that I’m thinking of writing:
1. Our Story – Intro
2. Practical Matters – Our first clinic visit
3. Lifestyle changes:
* Family priorities
* NO SMOKING!
4. Existential angst (optonal philosophy chapter)
5. A depressing reading list
* Medical research
* Community / Support groups
* The Internet Community
7. Charity work
8. Carrying on & Living life
9. One year on – where we’re at
* Having more children after a CF diagnosis
* Universal health care
* Additional resources
What do you think? Is there a need for such a book? Would you find it helpful? Am I missing anything in the basic outline above? Let me know… The more feedback I get, the better the end product.
8 replies on “I’m writing a book – “Cystic Diagnosis””
Good for you Todd! I think a book such as this would be welcomed by those newly diagnosed! Back when I was a new parent and a new parent of a newborn with cystic fibrosis, I felt alone and at the time grieved the loss of a healthy child. I had to come to the realization that dealing with cystic fibrosis on a daily basis would be our “normal”. It would have been comforting to have a book that would have given me insight into what was ahead in our first year, aside from the medical facts that are easily found on the internet. I think your outline is very extensive and really does cover alot of what I can think of now (that was almost 10 years ago!). I remember the decision of whether or not to have another child after a CF diagnosis. It was a heated debate where again, we felt alone. I think a book such as your that addresses social and lifestyle issues surrounding cystic fibrosis would be extremely helpful to families that live with cystic fibrosis.
Todd, I think this sounds great! Let me know if you need any research/fact-checking/editing help along the way! This is inspiring, and I know you can do it!
Impressive Todd. While I am fortunate that I have not had to deal with CF in my family, having a 3 year old and a 1 year old now I could only imagine the devastation such a diagnosis would have on me and my family. Like you, I would immediately start researching and I think such a book would provide a lot of help to many people. You go BOY!
P.S. I miss our debates on religion.
Great idea and I like the outline. I always enjoy reading your blogs, so I know your book will be just as well written! I wonder about including a foreward or a preface where you address the fact that the person reading the book may still be in shock, coping with a diagnosis. In the weeks’ after Eugene’s diagnosis, we found a very helpful book ‘Cancer is a word not a sentence” where it addressed the feelings we had.
Also to affirm that not everyone has to be able to read the whole book, sometimes it’s too overwhelming, it’s OK to leave some chapters for later. Everyone’s journey is different.
As my newborn was just diagnosed with CF a week and a half ago, I would much appreciate your book now! I am looking for resources to help us in our new reality with CF – your outline is just what were looking for now to digest the medical information but more importantly what it is to actually live with CF. I look forward to hearing more. Good luck.
Great blog Todd.
I’ve really enjoyed reading your posts and hearing your perspective.
I work at Cystic Fibrosis Canda (the Canadian Cystic Fibrosis Foundation) office and your posts are such an effective way for creating awareness about CF. Making people understand that this disease effects kids, families, communities all across our country and more needs to be done to find cures and more effective treatments is something we are all striving for.
Keep up the good work!
Please write the book. My grand daughter was born with CF and I have searched everywhere for such a read. Can’t find it. I will bookmark this site and check back often. P.S. Love that Kindle is one of your favorite things!
Thanks for the feedback Trish. I appreciate the note. I am working on the book. It is taking longer than I anticipated, but, I am working on it. I’ll provide an update on this blog sometime in June with my timeline to complete this work. May is reserved for Great Strides fundraising, but as soon as that’s done, I’ll be full speed ahead with book writing again.