Wednesday, 11 December 2013

Why do Special Needs Parents feel so guilty?

Why do special needs parents feel so guilty?

I’m going to keep this short and sweet because this is going to be different for everyone. 

There is a strange phenomenon with many special needs parents. That phenomenon is an overwhelming sense of guilt for things that are quite often, outside of our control. 

In life, there are plenty of things to feel guilty about.  We all make mistakes and no one is perfect.  There is an enormous weight that comes along for the ride when guilt is involved. Speaking from experience, the weight of guilt can be absolutely crushing.

Some of the things that I feel guilty for, as far as my kids are concerned, weigh very heavily on me. 

I feel guilty because life is harder for them than it should be.  As far as Gavin’s concerned, there isn’t anything about him that I don’t feel guilty for.  With gas health problems, we have to strip him of essentially being a child because if we don’t, we could lose him to one of his many life threatening health conditions. 

For most of Emmett’s life, he had no language ability at all.  We didn’t even think he could hear us. 

He was so aggressive and frustrated, all the time.  It was heartbreaking and I was overwhelmed with guilt because I couldn’t fix that for him.  I couldn’t remove his burdens. 

I feel unbelievably guilty because we spent so much time trying to help Emmett and Gavin, that in a way, Elliott slipped through the cracks.  We did absolutely everything we possibly could but there’s only so much we can do. 

The stress of everything over the past decade has destroyed Lizze’s health.  She lives in chronic pain, menopause at 33, with a migraine that has lasted over 2 years and an untreatable sleep disorder.  Her body has basically turned against her and is shutting down.  She needs to sleep literally all day long but I have to wake her up throughout the day, especially when the kids are home. 

There’s only so much that I can do alone and I feel guilty because I can’t give her what she desperately needs. 

For that matter, I can’t give any of the kids enough of what they need from me.  I live with that guilt every single day.

These are all things that I have no control over and yet I find myself riddled with guilt.  I try really hard to recognize that these are things in which I have no control over.  I tell myself that I need to focus on the things that I do have control over.  If I spend to much time consumed with unnecessary guilt, things will fall through the cracks that I should feel guilty for. 

I just want you all to know that I get it.  I understand what it’s like to feel guilty for a million things and even with the knowledge that many of these things are not within my control, somehow it doesn't make it any easier. 

In many ways, this is an irrational sense of guilt but it’s also very powerful and can be quite debilitating at times.  Perhaps someday, we can all put this guilt down and walk away from it, leaving it all in the past.  Until such a time, we just have to try and keep things in perspective.  Knowing that others out there feel the same way, is always a positive thing. 

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