My Moments to Breathe

Thursday, November 14, 2013

They gave me life



As a kid, I never remember my parents need to sit down and explain what it was that made me different. They never said or did things that made me dwell on the fact that I was different. They were some kick butt parents and even though I am not sure at the time they knew it or not...they were doing the perfect thing for me, and for them. They were being stronger than the CF.

My mom, Jan, my comforter:



She never let me see her cry about my CF (so far I have only seen in twice in my life and they both have happened this year!) but she has seen and heard me cry, well, too many times to count. She is the person I call when I just need to vent out how sick I am of being sick. About how frustrated I am with everything that is going on, how I hate my port, how eating makes me want to throw up, how my skin broke out in a new rash, how the antibiotics are making me feel cruddy. She lends me her ear and just lets me know that she can understand how sick I am of all of it. Now that I am a mother I can not imagine the things she has had to endure with my (here is that nasty word) terminal illness. Think for a moment that you have a baby who is frustrated, hurting, screaming and literally wasting away to nothing and trying to just figure out a way to make her happy. Imagine watching your little girl have surgery at 6 for the first of many. Imagine watching your teenage daughter not grow properly. Imagine watching your adult daughter wait for lungs, which is the only chance she has to live longer...and you can do nothing for her but pray. Imagine that as a mother. 

She always made sure things were a little special and also told me, "if you have to deal with the bad might as well get some good too." So on days that  I would go to the doctors she would take me over to Grandmas for lunch and to watch the Price is Right before I had to go to school. After my first GTube, I didn't want to leave the house because I was in pain. So she told me that if I walked with my back straight in the mall she would buy me some new nail polish (Yes, it did work because the obsession with my nails started at a young age...I got purple and gold from bath and body works!) She would play Super Nintendo with me while I did my vest, just so the time would fly by. She would encourage me to talk about it in college and do many reports about it to help with my grades (it worked for ANY class in college...)  She just always looked at the good things to come out of it. She still does.

Because of her being a mother who was scared, it has really made me be OK and WANT TO tell other mothers and fathers about my story. To show them that there is hope. I wasn't suppose to make it past 12 let alone graduate, get married and have a baby. There is hope for little ones with CF and although, yes, it is TERMINAL...it doesn't mean that is a death sentence as soon as you hear the words Cystic Fibrosis. You can still live and have a purpose, a great purpose. Heck, like I said this CF life made a new healthy lfie, and I can't even begin to explain how important that was to me for sooooo many reasons.

My Dad, Greg (Ed...hehe), my rock:



Now I have N.E.V.E.R seen my dad cry about my CF. Even when I told him I was getting lungs, he was a rock...my rock. He calmly said, "you got this." He is the one that gets the call when I need some sense knocked in to me. I won't tell you some of the names he calls me...but they are along the lines of, "you ding dong." He helps me get it together again and turn the cry back into that laughter and strength that I have deep down hiding. KNOCK IT OFF, but in a way that for some reason my dad knows how to say to me that I can listen to. I like to think that I am much like him, and can follow that motto he gave our family, "you gotta do what you gotta do when you gotta do it."  I can talk myself out of pain and I can do the things I hate because he has hit me with some kind of words that strikes a cord.

My Dad will do pretty much anything to make sure that I keep up my fight with everything I can muster. (Check the blog out about my phone call from Kris Draper...) Whether it is a good home cooked meal...ok MEALS...when I come home; to a card sent in the mail with just the right message. He is the person that when I need a fresh perspective I can sit up late and talk with him and he can give me a new way to look at things...or really just a good reminder of what I had already known. I have this spot in my heart for my dad that just is there and I fight hard because he wants me to.

He was the one who would take me the the majority of my doctors appointments. We had some good bonding time (maybe this is why I feel like we still bond so well!) He taught me things, and how to listen, how to stand up for myself (which I am still working on.) and that I am my own boss in the hospital/dr office. Here is a story for you:  so 1 of my doctors was known for his 3 hour wait in the waiting room. Well, I was old enough and knew things like softball practice that I could miss due to this wait. So needless to say I was getting pretty upset and since my dad was sitting there I was, like most girls do, taking it out on him. "Dad, you need to get things done so we can get out of here." "I'm getting ticked off." "This is so ridiculous." All said with MUCH attitude. So with a little chuckle Dad calmly said to me, "Cass, you need to be assertive with some besides  me." HUMPH...I crossed my arms and pouted thinking how I would tell the dr (but knowing I never had before.) So when the Dr. finally came in and asked how we were Dad just smiled and said, "Ask Cassie." So as the Dr. turned around I said "Pretty crappy." Dr, "OH?" Me, "Yeah thanks to this 3 hour wait I could miss softball practice and may not start tomorrows game (big deal in high school, you know!) Needless to say, that was the last time we ever waited more than 2 minutes for him. To this day he still will quote "you need to be assertive with someone besides me." And I was, and he is a proud Dad! I have learned many lessons!



This Blog doesn't even begin to do my parents any justice for everything they have done for me and continue to do for me. If you want to know more stories, I will gladly share them with you...just ask. 

They never held me back. They always told me to do whatever my heart and head told me to do and my body would tell me when my limits were met. I am positive that even though they didn't know it at the time, as an adult that very thing has kept me sane. I live life. I love life. I love the people in my life. I treat CF like its important but not that it is what should control my every move. Death was never a word used, time limit was never used, nothing to that sort was ever used. It was always LIFE. My LIFE. 

Thanks Mom and Dad for EVERYTHING...let me say that again...EVERYTHING...you guys have done for me, Jeremy and Laila. Thank you for taking care of Laila when Jeremy is working and I am down. For dropping everything for the dry run. For making my childhood a perfect one. For making me look towards life more often than death. Most importantly, for just being YOU! God knew that I needed YOU as parents so that I could be strong, and live, and not back down when giving up is an easy option. He gave me YOU because YOU were the best ones for ME!!! I love you both so much!!!

1 comment:

  1. GREAT read, Cassie! What a wonderful tribute to your dear Mom and Dad. Nicely done, Zells. What a lovely daughter. ;) xo

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