Friday, August 14, 2009

Doing Good While You Read and Write

Remember those walk-a-thons you did as a kid? Or maybe you still do them. You get a pledge for a certain amount per mile then you walk your tootsies off?

Well, if you would like to make a difference, helping out a cause very near and dear to me without wearing blisters on your heels, do I have a fund-raiser for you--Unleash Your Story.

Unleash Your Story is a fund-raiser for the Cystic Fibrosis Foundation. I don't talk about it a lot, but both of my kids have this disease. My daughter was diagnosed at 7 months of age due to failure to thrive. The four months before that were truly the worst months of my life. She ate, she threw up and she pooped (a lot of all three of these, unnatural a lot). She didn't lose weight but she didn't gain and she looked horrible--pale and frail. Then a doctor suggested we try formula (a horrible story all on its own), and after many struggles when I got her to take some, she LOST weight.

I was literally watching my baby die in my arms and there wasn't a damn thing I could do about it. I had seen six different doctors in three different states before we got her diagnosed. Then I thought the diagnosis would kill me.

There is very little like being told your child...baby...has a fatal disease, a disease with no cure. I didn't know what to do, whether to plan for her future or not. It was a very dark time.

Now I have two kids and as the odds would have it, both of them have CF (1 in 4 chance with each pregnancy if both parents are carriers). It's hard, we have daily treatments to do, lots of medications to keep straight and way more doctor visits (maintenance mainly, thankfully) to deal with, but thanks in a HUGE part to the work of the Cystic Fibrosis Foundation my kids are doing well, and I have high hopes that there will soon be even more options for them to increase their life expectancy. Huge.

But then there is still that. I still have to think about "life expectancy" and my kids in the same sentence. It hurts, but it's real which is why if any of you have the time and desire to take part in Unleash Your Story I for one would greatly appreciate it.

Plus, you can win great prizes! :)

Take a minute and check it out! UnleashYourStory.com

4 comments:

ARCyndi/Dr. Cynthia Morgan said...

Lori - I had a very close friend with CF all through my childhood. When she died at age 18, she was one of the longest living persons with CF. (That was 35 years ago) The lifespan for CF people has changed A LOT since then.

My heart goes out to you and your family. two children with CF...You have my respect.

TheGhostBlogger said...

Mary D
zenrei57 (at) hotmail (dot) com

Dear Lori - my heart goes out to you and your family, and from now on I am keeping all of you in my prayers.
Thank you for the information regarding the CF Unleash Your Story, going to go there right now.

You have my respect and compassion as well. Hugs Always ~ Mary

Casey said...

Thinking about you, Lori, and sending good vibes to you and your family. I, too, have a chronically ill child (Type I--insulin dependent--diabetes). Even though he's an adult now, I still spend all day, every day worrying!

Lori Devoti said...

Thanks everyone. I always tell people it is just our reality now. When my daughter was first diagnosed I didn't spend an hour not thinking about it and ever clinic visit was like salt in a wound because it forced me to really live in that CF reality. But now while I never forget it, it doesn't dominate my or their lives. They are not kids with CF. (meaning it is not their identity) They are who they are and they just happen to have this disease too.
Hugs back to everyone. It is truly amazing once you start talking about such things how many people face similar challenges.
Lori