Tuesday, August 13, 2013

You Have Mail

Received a letter today from clinic. It was a summary of Ruby's annual review. It didn't have anything in there that I didn't already know about the disease.

So why did it upset me so much?

Reading things on paper, in reports, in black and white can be so confronting.

I know that CF affects lungs, so why does it hurt to read words like "increase in hilar markings and interstitial markings in both lung fields".

I know that Ruby's fingers have changed shape and its not necessarily indicative of the severity of her disease. But it cuts deep to see the clubbing field marked as yes + .
And she loses points for these things! Yes, that's right, she receives a score in 4 different health categories. I've always hated tests. Especially when the results mean so much.

We do all the things we do to slow the progression of an unstoppable disease. Although we have our ups and downs, on the whole she is happy and active. The CF part of her is often invisible, it is an extension of her. Not necessarily in a negative way. It just is what it is.
As Ruby says when we call her nicknames, "I'm not (insert cute nickname here), I'm just Ruby Monster Superhero".

So emotionally, reading the facts and figures of Ruby's health, covering topics from nutrition to gut health, was a real kick in the guts. I'm not a medical professional, I'm a mother. And as a mother, it is hard reading about the issues your child faces.

On the other hand, I am so grateful that they sent us this report. It gives me more to look over, more to study, more information to digest. And although some of the results were less than perfect, it would be wrong of me to not feel grateful for all of the positives. Her weight was great, we got good feedback about the wholesome diet we have. Her CF overall is classified as "mild". We are going a good job! So many others have it so much worse.

I may sound over sensitive, but what I really am is scared. It scares the living crap out of me that this is a progressive disease. It scares the hell out of me that at only 3 years old, she is already declining in the one thing that is practically irreversible - lung health. It scares me that our next annual report could be very different. And then the one after that, then the one after that.

But we will keep fighting. We will never let our guard down. We will never give up or slow down.


Anonymous said...

Oh Danni, thanks for your very honest and real story about the impact that one report can have on your hopes for Ruby. Sounds as though you are doing an incredible job in trying to keep Ruby as healthy as possible when you are facing difficult odds. CF is a insidious disease that while it is eroding away in the body of your child it is eating away at the emotions of those whom are closest. Stay strong and continue the fight knowing that there are so many other families who are also enduring the same battle right alongside you!

Christine said...

I know. I hate it too. Because throughout the year when they've told me these things, the nurse or doctor has done so compassionately, with encouragement and hope. They don't come all at once. But then I get the annual review letter, and the pile-up of terrible things just seems too much. Here's hoping your next annual review letter is better.