Thursday, April 29, 2010

Only Sometimes...

Only sometimes do I feel like I might have a total emotional break down. Only sometimes do I cry. This is one of those times. I feel overwhelmed today with life in general. Cystic Fibrosis wears me down, and then I stop to really think about how I am feeling. Only sometimes do I feel guilty. Guilty for feeling helpless to cure my child of this fatal disease. Guilty for feeling like I am the one backed into a corner with no where to go. Why should I feel worn down when it is not me who carriers this disease everyday; the one who feels the physical effects of this disease every single day?

How is Lucy feeling when she has to be shaken by her vest day in and day out? How does Lucy feel when I constantly remind her to take her enzymes every single time she puts food in her mouth? How does Lucy feel when her rectum falls out of her body and have it pushed back in by her mommy? How does Lucy feel when she has horrible stomach aches and gas that clears a room? How does Lucy feel when she complains of a stomach ache and shits 10 times a day? How do I have any right to feel overwhelmed when it is Lucy who bears the real burden? Only sometimes do I feel selfish for having these feelings.

I wonder if she really knows any different. She just lives her life as she has always know it to be. For now, I bear the burden for her. I see other CF warriors fighting with all their strength and all the courage they can muster. I look up to them, but I also see Lucy's potential future. It is a huge weight on my heart. I want Lucy to grow up thinking she can do anything, fight CF with everything she has every single day, but how do I teach her these things, guide her in the right direction, when there are days when even I don't want to fight? How very selfish of me. Of course, I would never give up fighting for my daughter, but I will tell you, there are days when I wish CF would take a long walk off a short pier. Give Lucy and I a break. Only sometimes do I pity her, pity me. I do not want a fucking pity party. This post is certainly not for sympathy. I am venting. I am human and can only be happy so many days of the year. Today is my day to be pissed off, overwhelmed and fed up. I am a tired mom. My heart is tired, my hands are tired, and my head may explode today.

This semester is almost over. School ends in nearly 3 weeks. There will soon be no homework to consume the better part of my day, so that I may spend all of it with Lucy. I do not feel guilty about that. Summer will be good. Relaxing. I got mad at Lucy today. I feel guilty for shouting at her. She was only begging for the attention I was spending on an English paper. I can't wait until this semester is over. I apologized to her, but I still feel awful. How will I ever make it to my own goal if I am already overwhelmed with what I have on my plate. At this very moment, I feel weak. A very weak mom. How will I ever survive nursing school when I get there?

My eyes are swollen and my pillow is calling my name. Tomorrow will be a better day. Only sometimes do I feel low. Only sometimes do I feel like complaining. Today is that day. I'll wake up tomorrow feeling so much better.


  1. Oh Kacie, we ALL have those moments. And I think we're all ALLOWED to. And they don't mean we're giving up, just TEMPORARILY giving in, maybe. It seems like after I've had those moments-- where I cry and throw my hands up and scream that IT'S JUST NOT FAIR-- I feel like a little bit of the weight has been lifted and it's easier to pull myself together, wipe the snot off my face and move on. Not only are those moments allowed, I think they're NECESSARY for our sanity. You're not a weak mama, not by a long shot! I think you have more strength than you know. You are a wonderful example of courage, determination and love.... SO MUCH LOVE.

  2. Just found your blog, I will read it from now on. My heart goes out to you.

  3. Just found your blog.. and read this post.. my heart goes out to you.. I will read from now on.

  4. I know it probably doesn't sound possible, but, that post really made me feel a lot better about things. I mean, seriously, that is exactly what I think about. Exactly. It feels SO GOOD to know that I'm not the only one who feels so freaking overwhelmed by this CF filled life. Sometimes it feels like "normal" people just don't GET it. You know? They just don't understand what we have to do everyday ... even though I've told them over and over again.

    Anyway ... feel better, but thank you for this post. *hugs*

  5. I'm glad you're allowing yourself that day for overwhelming, much as your frustrated and pissed you mentioned tomorrow's a new day and even if it's a bad day too you know it'll be better eventually. but i'm glad you're allowing yourself these's the best therapy possible..and it makes you a better mom to lucy ;)

  6. I hope you are feeling better today. You are human and entitled to your feelings.

    Jacky from MD

  7. As a fellow CF parent (both my kids have it), I felt like I was reading my own post. I feel just like this "only sometimes", like you said. Most days, we just go on living life like any normal family, but then I have days where the reality of everything just hits me. As a matter of fact, I blogged the other day about it because it was "one of those days." ( You are not alone; we do carry the burdens for our children because they don't know any other life.

  8. Just found your blog from Conner's. I had to comment on this post in particular because, like other commenters, I feel like it could have been written by me. So many of us are where you are, but thank goodness only sometimes! Hang tough. Hoping today is one of your better days.

  9. I just wanted to let you know that I understand exactly how you feel sometimes. That I feel that way too. I hope today was a better day.


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