Sunday, November 21, 2010

Managing and Surviving Guilt

EVERY parent deals with guilt. Some parts of our society thrive on it. I had a pretty good handle on Mommy targeted guilt until CF came into the picture.

Guilt is one of the stages of grief. Somehow, I thought I could skip that step in the process by holding hands with my old friend logic. Logic told me, in no uncertain terms, that Guilt was silly. That we had no known family history in our very large families of CF, that we had no reason to think we might be carriers. My wrestle with Guilt on that issue was very small and very short lived, and I believed the two of us had parted ways with the knowledge that Guilt was certainly not a welcome guest.

In the long run, it's not so simple. There are other places Guilt sneaks in, both logical and shockingly ridiculous. I have to be vigilant not to let Guilt in, because he has a tendency to make himself at home, pee on my rug, and punch me in the eye. And Guilt pops in at the least convenient times. Having a child with a life threatening condition like CF can also lend you to survivors guilt and post traumatic stress, very real and serious things to struggle with. And since parents like us are fighting to keep our babies healthy and live as normal lives as possible, those feelings can easily be denied and ignored. In an effort to normalize the things we cope with, and may be feeling, I'm going to do the most uncomfortable thing I can think of and let you in on my little mental breaks. It happens to all of us.

I always thought my coping skills were far above the norm. I am intelligent and have a good understanding of my sons disease. I work every single day on maintaining a good attitude and instilling the same in my children. I try to be a good example for other parents stepping into this world of uncertainty. I have a very happy life and a stellar family, J is maintaining an excellent level of health thus far. Really, what do I have to be guilty or sad about? (Here goes)

My child needs me even more than 'normal' babies, so I can't ever focus on anything else or I'm not taking good enough care of him/her:\par

I feel guilty that I still care about things like my looks. I feel guilty for taking the time to fix my hair or work out.
I feel guilty about how much of my time is spent having to choose which of my children needs my attention more, and that by the default of the time necessary to complete J's daily care, Em is often on standby
I feel guilty that Em suffers from CF, not from having it, but from fear and worry about her brother, and that now for her too, these feelings will never go away.
I feel guilty that someday I may have a moment in my life not dominated by CF, because Jackson never will.
I feel guilty when I'm weary.
I feel guilty that when I share everything about Jackson but keep more to myself about Emily in an attempt to keep CF from dominating SOME aspect of her life, it looks like I care less about her.
I feel guilty that I think about a day that isn't dominated by pills, vials, ampoules, masks, and reaching insurmountable caloric goals.
I feel guilty for my relatively easy health.
I feel guilty that I spend so much time thinking about my own feelings.

I KNOW, these feelings are impulses, not logical thoughts. I know I am a very good mother to both of my children. I know it's perfectly normal to struggle with how you 'should' feel about things. I also know I am not alone in dealing with this. WE as CF parents have some unique challenges, one being the sheer quantity of possible issues and complications we face. If I was running a business and had more work than I could handle alone, I would hire someone to help reduce my load. I have adopted the same philosophy towards caring for my mental health.

I hate talking about it. I don't like to admit that sometimes I can't handle it alone. But I think it's incredibly important to normalize these struggles as part of our CF lives. Don't be afraid to talk about it, or get some help for it. Regardless of your financial or insurance situation, there are resources. In order to be the best parent and caregiver you can be, you have to continue to take care of yourself. If you want to be the tree from which your family is nourished, don't forget to water your roots.

Are you struggling to cope? Think you might be experiencing symptoms of PTSD? This page has many links that might help, including a crisis hotline:
How to Find Help


  1. I think you are amazing Amy & I hope to meet you, Emily & Jackson someday. Keep up the good fight :o)

    Amber Cooper McCoy

  2. Thank you for this post! I have a 6 year old with CF and have been feeling VERY emotionally drained and guilty lately. Aidan is really struggling with the emotional aspects of CF as am I. I am also educated, well spoken, understand CF, act like the pillar of strength for others but inside...i feel like i am crumbling under CF sometimes. I am relieved to know I am not alone.