My Moments to Breathe

Friday, November 9, 2012

I was a kid once

When I was a little girl I never had to be told I was sick. Or what CF was. I just grew up knowing I was a little different than most kids. 

Now the odd thing is that my sister is not that healthy either. When she was a baby she had open heart surgery and has had to go to the doctor every few years to check her heart out. We often joke to my parents that it was a sign they shouldn't have mixed Italian, Swedish and German together and that God was telling them ENOUGH! Ok all jokes aside I think that her being sick too helped a bit. Only because at least I wasn't the only messed up child in our families! (BTW she is doing AWESOME!!)

I was the ditzy little blonde you see up there posing because I was for sure thinking I could and would be the best model ever (you know if the bird thing didn't work out...only a few people are laughing right now and thats ok!) I loved to play Barbies or My Little Ponies with my sister. I was the girl who would rather wait til the last second to go potty so I wouldn't miss anything. I was the little girl who ran (very clumsily!) and didn't get out of breathe. Life was pretty normal, I just had to go to the doctors more often.

My parents did a great job to make sure I had a normal life and that is very important. I was normal after all, right!? If I was a good girl when I got a shot or stayed still during a sit with the ENT I could get a special treat...I remember one time my dad during an ENT visit (which he HATED) told me if I held still and didn't cry he would buy me a Barbie. Little did he know I didn't mind the ENT because it meant no needles. I sat SO still cause that Barbie was gonna be mine. She was so beautiful. The other thing my mom would do in high school was let me skip a half day after an appointment and let me relax while she and Grandma would make some lunch. If you have the bad, you can have some good too.

But I do remember getting certain new meds. Like my nebulizer or when I started to take my pills in capsule form and not mixed into my applesauce! I never questioned what it was for, I just did it. I also remember my first PICC line (Ok, I questioned that one and many of those after!!) And I remember every surgery. I look at Laila and just think, "How did my parents do it?!" 

But Laila is at that age (and seeing me sick so much) that she is starting to just KNOW about CF. Now I haven't been to the point, and not sure how or if I ever will be, in explaining to her how this is terminal. YUCK I hate that word...TERMINAL. I figure one day she will figure it out when she learns more through my doctors appointments, hospitalizations, surgeries, sicknesses and listening to her parents talk. But for now I am letting her enjoy the childhood she has without having to worry about her mommy and the thought of not always having one. 

Still now its time to do some work and rest up. Meds and water!


  1. You and Jer are wonderful parents to Laila...just like your parents were for you. I remember the look in Rachel's eyes when she knew her Mom was not the healthy mom she pretended to be. It broke my heart to know my child was worried sick about me. It's not supposed to be that was my job to worry about her!

    You will know when Laila is ready to know more. She will have that look, and she will ask more serious questions, and you will see the worry. That's when you comfort her with as much truth as she is ready to handle. I hate the word terminal, and I didn't have to explain that because my disease is not terminal. When you have to discuss the hated term with Laila, God will give you the words. So don't worry about that now, just enjoy your baby's innocence and trust in your God.

    Feel better soon! Love you!

  2. Hi Cassie,
    This is first going to sound really weird, but I promise I'm not a creeper...well at least not the creepy kind! haha I went to a small tiny Lutheran private school with your friend Stacie Graves. As I was scrolling my facebook newsfeed today a picture of her appeared (tell her I said hello btw) and I realized I had forgotten we were even facebook friends. So I clicked on her picture to see what she's been up to and kept seeing pictures of you and Team Cassie stuff and wondered what it was about. Normally I wouldn't blink an eye but I do a lot of walks, blogging, advocating, etc. in my own life. That lead me to your blog and so here I am... you are amazing! I write a blog about my life with Crohn's disease, a motility disorder, and arthritis. I know all about my own disease but what I learned from your blog is that I knew very little about CF. I just wanted to let you know that if anything you are teaching people just what life with CF is really like. Why it's important to understand and why it's important to raise money. Your story is...I don't even have words. You are so brave, beautiful, and strong. I'm definitely going to continue following your story and really think you deserve a 2012 Wego Health Activist Award nomination. :) One of the reasons I started my blog was because I was tired of the lack of understanding. I would say I had Crohn's disease and either no one knew what it was or had a really off idea about what it's like. Until they understood that I had none of my large intestine left, the amount of hospitalizations, blood transfusions, PICC lines, TPN feedings, surgery, etc. I wasn't going to rest! I think you are doing a wonderful job of showing people life with CF and you should be very proud. Anyway, that is all. I could have creeped without letting you know, but I had to tell you how great I think you are.

    Sara Ringer