When I was a small child, I went everywhere with my mother. Mostly we went grocery shopping. That’s what we told my dad: “going shopping.” Really we went to homes of other parents who had children with serious disabilities. My mom was a great resource for people — people who were housebound because of the needs of their child. I remember going grocery shopping and then “just stopping by” someone’s house while we were out. These were really check-up visits where my mom checked in on her friends, brought them much needed groceries, and had a cup of coffee with them. As a result my earliest recollections are of being surrounded by individuals with various significant disabilities.
I’ve never shared this with anyone, so it’s our little secret, okay? At some point I starting hiding upstairs and “practising” various disabilities. I would go blindfolded. Stuff my ears. Hop around on one foot. Not talk for a full day. My father caught me one day. I didn’t know he was there. I was blindfolded and had plugged my ears. I had advanced to multiple disabilities. He grabbed me by the shoulders and when I took off the blindfold it was quite shocking to look at him. I thought his head was going to pop off his neck. I could see it getting bigger and bigger like a cartoon. My instinct was “run for cover” but he still had hold of my shoulders. He spoke very quietly and slowly… “Jesus…Mary…and…Joseph…what…are… you…doing?” Stuttering I explained that everybody has some sort of disability and I wanted to be prepared when it was my turn. After saying a prayer, he “sat me down” to talk about it. He told me that he prayed that it would never happen. And if it did, we’d deal with it then but it wasn’t something any of us could prepare for. Just because they had Walter, they really were no more prepared when they had David. I listened to my Dad’s advice. I stopped practising. But, one thing I didn’t share with my dad that day was that from my first moment of conscious and reflective thought, I thought: “that should be me. ” That I was the one who was meant to have disabilities, not David. Statistically, the youngest of 11 children. My father 52, my mother 40 when they had me. What were the odds that *my* development would be more typical than David’s?
Guilt can stop you in your tracks, or it can propel you forward. You may be the primary caregiver, or you may be a sibling who has never even met your sibling with developmental disabilities. In either case (or anywhere in between) you may feel various feelings related to your relationship with your sibling. For myself, I have recurring feelings of guilt, and I work to deliberately manage through them. Here are a few tips that I have found to help me continue to move forward:
- Name it when I feel it. Ah, the guilty conscience. When I can name it, I can figure out why I feel that way and at least try to do something. I’m a do-er. I always feel better if I at least try to do something.
- What is it other than guilt? Don’t be afraid to dig deeper. What else am I feeling? Anger? Resentment? Frustration? Sorrow?
- Give myself permission to have the full range of emotions and don’t get angry with your self for not being your “best self.” My “best self… the vision of the ideal caretaker.. is my mother. Now that’s something impossible to live up to!
- Make sure your behavior is aligned to your values. Whenever I cross over the “value” line, I feel that in my gut right away. I call this the “gut check” and I always know there is something I need to do in my own behavior when this has happened. I remember the one day when I was in elementary school and my brother’s class was paraded across the school yard. It took me by surprise. The class never ever came out when everyone else was out. I was prepared at home, on the street, on our porch. But, I wasn’t prepared at school when the school kids started chanting the “R-word.” I did nothing. Paralyzed. I was sick with myself for, well, forever (gosh, it still makes me sick when I recollect it). That never happened again. I was never unprepared again. Gut check.
- Oh, I guess my last personal tip is: Confession is good for the soul Hence this blog post! I feel better already! Share with others. It might not be within your family but you can always share with the sibling leadership network: http://www.siblingleadership.org/
If you are a parent with younger children, you might want to take a look at sibshops: http://www.siblingsupport.org/about/copy_of_index_html. Get your children talking to others in a safe environment. Like me, your children probably have things they would never confess to you.
If you have any recommendations to share with others, I hope you will post them here.
Postscript: You know, the upside to my survivor guilt?1) I believe that every life has value — mine would have no less value if I was born differently 2) In addition to value, I have the opportunity to give my life meaning. 3) I wake up everyday giving thanks for what I have .
Yours in community,