Super Girl Guilt

Exciting news! I have moved blogs. I am in the process of slowly moving all the posts over. Please join me at MomOffTrack.com.

There are lots of ways to deal with being the parent of a kiddo with chronic health issues. Mine has always been to lead as normal a life as possible. The problem with that is that no matter how we try, we never are really ‘normal’.

75% of our days pass in normal mode. But then those 25% of days come and I reminded that we don’t lead the most normal of lives. Doctors remind me of this, family reminds me of this and yet I refuse to give into it. They worry about ‘caregiver burnout’. Am I taking enough time for me? Honestly, I think I do plenty of ‘me’ things. I am trying to work on it and I think I am fine.

What I am not fine with is the huge amount of things that I have to cancel and people I inevitably let down. See, we are plugging along and then BAM! something happens and we need to shift our focus back to the kiddo who is not doing so well. The thing is, this happens A LOT in our lives. We cancel on things A LOT. I let people down A LOT because I take on things in that 75% of time when all is well and good and I think I can do anything and then it turns out I can’t.

But what is the answer? Live as a hermit and never try to have a normal life because you know at some point it won’t be normal? Continue to take things on warning people about that 25% in advance? Live normally and let things happen as they may? I don’t know. I really, truly don’t know.

Sure, people understand when something big happens like a surgery but I imagine they get tired of hearing, “yup I was on my way but now little guy is sick and I just can’t make it” 10 minutes before I am supposed to be there. With the syrinx and slit ventricles he is dealing with he can be fine one minute, sick the next and fine again within minutes, or not. There is never a way to know.

A fellow blogger Anissa just had a stroke. She is 35 with two young kids. She has had a stroke before. Her young child battled and beat cancer. She has a lot of great posts on her site. The one that struck me the most was her last. She was frustrated with laundry, getting ready to go on a mommy blogging sponsored cruise with Disney. Yeah, pretty much my typical post (minus the very cool Disney cruise) and then BAM, she gets smacked in the face again! It reminded me of how quickly my life changes in an instance. Should she have never agreed to get back to ‘normal’ life after her last stroke and her child’s cancer for fear she would have to be reminded again of life’s unpredictability? Of course not. That is ridiculous. Whether you have special needs or not life changes in an instant for all.

But those sudden shocking moments of life changing events is not what I am really talking about it. I am talking about the smaller ones. The ones that living with chronic illness brings. I am struggling I guess with guilt of not being able to be all things to all people at all times. Yes, I know that sounds crazy! But I can’t don’t know anyway to cope than trying to be SuperGirl. It sure feels like crap though when life shoots a hole in my cape and I fall to the ground disappointing everyone that I am human after all.