Raising Children While Sick – Keeping the Guilt In Check

I love having a family more than anything, but it has to be the hardest thing I have ever done – particularly with being sick.  As others who are chronically ill read this first sentence, I can envision all of your heads shaking yes in agreement.  While I never regret having a child, I do miss the guiltless (is that a word?) days I use to have because I didn’t have to worry about my illness affecting him.  I would occasionally feel guilty for my husband and family before having children, but nothing like I do today. 

Once I had my son, it was like everything in my life – my illness, my own personality, the things I say and the things I do, became magnified.  Does that make any sense?  For example, I never noticed how bossy I was until I noticed my son talking to his friends the same way that I talk to people.  I never noticed how many hours I spent on the couch or in bed before because I didn’t have a little one running around to remind me how long it has been since I played with him.  I never noticed until having my son how much easier it was to go with only a few hours sleep.   I never noticed before he came along just how much better I felt because I could rest more when back then I thought there was never any way I could feel any worse.  But I do feel worse now – much worse.  All of these things seem so significant and huge now and it’s like I’m hit in the face as soon as I wake up every morning with the fact that I am sick and that I probably will be for the rest of my life unless a cure is found. 

ME/CFS, Fibromyalgia and Interstitial Cystitis do not discriminate and exclude mothers so we have to find some way to push on when our bodies refuse to cooperate and when our exhaustion level is so severe no one else could ever possibly understand or would want to fathom what a day in our lives feels like. 

I don’t blame my illness worsening on my son at all and I hope my writing doesn’t reflect that because he is the greatest and most wonderful joy of my life.  But I do take more seriously now any warnings from the doctors on what I should and should not do.  I was told when I first became sick that because of the severity of my illness I should never have children.  The doctor that diagnosed me with ME/CFS didn’t believe that I would even be able to carry a child full-term and I was so proud of myself when I delivered a healthy, full-term baby.  But I made a choice when I found out I was pregnant, and that choice was to have this beautiful creature who has made me feel a love that I never knew existed. 

I owe it to him to be the best I can be.  My best may not be what a “normal” person’s best is, but I do owe him the best that I can physically, emotionally, and financially give him.  And that is where my guilt comes in.  Because I am a perfectionist, my best is never good enough.  I am always second guessing my best and because of this, I always feel like whatever I am doing, whatever I am giving, is never enough.  I feel guilt because I think I’m never playing with him enough; I feel guilt because I spend so many sleepless nights that all I want to do during the day is sleep;  I feel guilt because my husband has to pick up the slack many times when it’s hard on him physically; I feel guilt because I don’t have the energy to cook all of the time and I occasionally have to give him fish sticks or a frozen dinner.  Guilt, guilt, guilt.  Lord, I could go on all day with how many things I feel guilty for.

This guilt is not healthy and I realize that.  I have preached so much to others about avoiding stress but my big stressor is feeling guilty and I am not practicing what I have been preaching.  I understand that I need to accept myself for the way I am and I work on that daily.  But you moms out there understand and you can relate to what we feel when it comes to our children.  I’m sure healthy moms can relate as well, just on a different level.  Their guilt may not be health-related but they have their own issues.

I find that I get through things by telling myself positive things.  I sometimes get strength to go outside with my son by constantly repeating to myself that I can do it, even though I may be having a horrible ME/CFS or Fibro day.  I think of him and it gives me the strength to go on.  Sometimes I think I would have given up on life a long time ago if it weren’t for him.  I have to survive for him and that is my motivator in life.