Tuesday, September 28, 2010


Over the last couple of months, several of my fellow CF moms have been discussing the point of life that I am dreading.

That age where our little CFers figure out that they’re different. Where the questions begin. Where our answers will be uncertain.

Quite often, I “forget” about CF. And for those of you who don’t live with CF everyday…you might have a hard time understanding that. With all the extra pills, vitamins, and inhaled meds he takes everyday, plus the vest…it’s a lot. But to us, it’s normal. And we do our very best to make sure that he feels normal.

But our Gav man is developing into a smart little boy. He walked early, talked early…and I know it won’t be long until those questions begin. And I’m not sure if I’m ready for it.

This little boy is my life, and while I do my very best to remain positive 95% of the time…that other 5% is back there hiding, coming out when I least expect it.

It’s not uncommon for mom’s to wish & pray that they could slow down time…to keep their little ones little for just a little while longer.

For me? I wish I could freeze time…keep him little, innocent and “healthy.” Freeze time until that cure is here. Freeze time so he never has to ask those questions. Freeze time so I never have to answer them.

sill boywalking with flag


  1. The "cure" is coming... I fell the same way. Last night laying in bed thinking, "this cure better come before 'that something' happens to our daughter!". Staying positive is hard sometimes but I think it helps to keep our little ones happy and healthy! Love to you and your family! Keep smiling! :D

  2. Beautiful Pictures of Gav, such a cutie!! I am with on the dreading that point. Ayla is getting there. Waiting for that cure so we will have good news to tell them!!

  3. My kids are 9 and 6, and both have CF. As a family we have worked hard to make them feel positive about it, and they do! At a CF stair climb Alexander (the 9 year old) saw stickers that said, "CF SUCKS"! He said," no it doesn't" and crossed it off so that it said, "CF doesn't suck". When I tell him why we are at Great STrides he says, "I don't want there to be a cure, then I won't be able to watch TV!" He is currently in competition with his sister about who has more medications. She is winning with 12 and he "only" has 8! Luckily they haven't been hospitalized recently, but our friends who have had hospitalized kids say they like it! They get to order food etc... I know what you mean though. Alexander read something on the back of the stairclimb brochure that said, "CF is a deadly genetic disease." He said, "Is that true?" I said,"yes it is for some people. That is why we try so hard to take care of you!" Let's talk about it after school. After school I said do you have any questions about CF or life in general. And he said, "yes". I prepared myself for the "WHY ME?" questions...but do you know what he asked? "Why do girls get to like boy things like Star Wars, but boys can't like what girls like?"

    I do dread the truth, but you will find that they come to live with CF in a way that is different from a parent who views their child with CF. My kids feel that their lives are pretty awesome since that is the only way they have known it! So, don't forget that fact for them... I know it is hard, but they do appreciate their lives... Have a great day!

  4. My mother just told us we had "a little extra". She answered questions honestly and on a level we could understand. This is never easy, but I know you can handle it.

    We'll have to meet up sometime at clinic so Gavin can see me in person and see how well I am doing. Provided one of us isn't under the weather, of course. I suppose I'll bring the Orange Guy too. ;-)

    Peaceful Things

  5. When I was 8 I found out the median age for survival was 16. I thought, "wow, my life is half over." That was in 1984.

    I have classic CF, as in, my lungs are declining at an average rate of approximately 2% drop in FEV1 per year. I have always had aggressive therapy, but therapy in the 70's is not the same as it is today.

    My parents never told me any lies, but I don't think I wanted to ask the right questions for fear of how sad they would be with the right answers. I was protecting them, in my own way, once I realized how life threatening CF could be. I took comfort in the fact that I had a brother with CF. (why anyone would have a sibling with CF this day in age is beyond me... but that's another post.)

    Once Gavin can read, it might be ideal that he have an online pen pal with CF that is his age. My favorite place to go every summer was CF camp. The first year I went, when I was 8 years old, I was so blown away that ALL THESE KIDS had CF! It was an amazing experience and it's sad to know it doesn't exist for children anymore.

    I guess what I'm saying is, be honest, but respectful of his age. I know you will. My kids (no CF) are almost 6 years old and they know "mommy has bad lungs" and "mommy does her machines." And they are acutely aware of how germs are spread and "how to protect mommy by hand washing."

    I haven't told my kids that I could die this year if I catch a really bad cold, because they are too young, and the time isn't right yet. We'll cross that bridge when we come to it. I am very open about death and dying and what happens to someone's body after they die. They just have no idea I am preparing them for the worst.

    That being said, I hope to see them graduate from high school. You just never know because.... CF does suck.