Monday, January 5, 2009

How do you answer ?

Well Breezy was just diagnosed in September 2008 and naturally that is when all of her treatments began. Well I'm sure when your a child four months seems like a lifetime but the reality of all of the multiple daily treatments hit her the other day. Breezy is only four years old but her mental age is much older. So when she questions us we have to answer carefully because she knows when we are talking to her like a child. The other day she had what I like to call a mini meltdown. She asked Nate and "I why do I had to do my treatments forever" and went on to tell us that she wanted to be finished when she was nine years old. All we could tell her was that the treatments will get better and shorter over time. Why? because there are lots of people working on a way to make daily life easier for people with CF. But that is all we could think of to tell her.

So my question to you is have you ever been presented with this question? And how did you respond?


Alicia said...

Wow, that's real life for sure! We haven't gotten there yet, but because I know it's not far off I'm very interested in the responses you get. I'll be checking back!

Cindy said...

Reilly hasn't asked any questions, but she has been doing treatments since 19 months. I think that makes such a big difference. Someone suggested I get the book "Mallory's 65 Roses", which explains the disease & treatments in a kids perspective. I did get it, and it's pretty good. Maybe that would help Breezy along? CF is tough, and it's just not fair that we have to put our kiddos through this, but when they are old(er), they will hopefully be thankful! :o) Good luck!

Bri said...

Poor baby girl! I hope things get better!

I'll pray extra hard tonight!

Genevieve said...

Bless her, Bless her, blessss her!

Soon, she'll be singing opera for fun while wearing he vest, I do.

Sigh, I wish her a miracle, honestly, I hope and pray by the time she's nine, she will have a breakthrough.

Carrie said...

I have had to deal with these kinds of questions from my son. He turned 5 years old in December and has been doing treatments his entire life. But he has 3 older siblings that do not have cf so he sees there is a difference. He just asked me the other day while doing his treatment why he was the only one who has to do them...he also asked me if he could stop them when he is 10 years old (I guess because his youngest brother is 10). It really caught me off gaurd....I just told him he had to do his treatments to keep his lungs healthy. I just dread the bigger questions that I know are coming...but like I always day at a time!

Christy said...

My parents were always honest with me about my CF, my treatment, everything the docs told them.
I am so grateful to them for that!!
God bless all of you parents of CFers.

Heidi said...

Along with Christy, my parents were always honest with me, in an age appopriate way of course. I started doing treatments shortly after birth, and I remember fighting it and asking why constantly! I'm sorry Breezy has to go through this. I also remember seeming much older than I was...CF is a lot to deal with as a kid.

Julie said...

There's a really good book, Little Brave Ones: For Children Who Battle Cystic Fibrosis.

It's written from a little girl's point of view who has CF. It has lots of pictures of her daily activities as well as other kids with CF across the country doing their treatments but also being regular kids. Seamus loves it and we talk about how lots of kids are like him and wear the vest, take enzymes, have feeding tubes etc.

He also really likes to look at the blogs and see Breezy, Samantha, Reilly, Phoenix and other kids with CF.

Anonymous said...

We will pray for you all! I am so sorry you and your famiy to have to go through such a horrible thing.It doesn't seem fair? It really makes me reflect on Sweating the "small stuff" like common curable childhood illnesses that I deal with every now again and makes me feel lucky that I don't have to deal with this.