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?
SURVIVOR GUILT!
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,
Kate.
Interdependent Lives 
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Kate,
Thanks for sharing your story. You are so right about “confessions”; there is so much therapy to be gained by simple talking with others, especially with those in a similar situation. I often use it after an accident investigation and it helps lift the burden of carrying allot of the thoughts around on your own. Brenda Tillman of Readiness Group International is a great person to help people work through unloading some of the burdens in life.
This may be unrelated, but I have two book recommendations if you haven’t already read them:
You Were Born for This: Seven Keys to a Life of Predictable Miracles
A Million Miles in a Thousand Years: What I Learned While Editing My Life
Thank you for commenting on this post. In particular, love the book references! Reading “a million miles…” now. Thank you, Kate
Thank you Kate for speaking on the subject of survivor guilt. I have always felt it but didn’t have a term to classify or define it. Just as when I was a small child and experienced great waves of anxiety but didn’t know it was anxiety…it just felt bad and scary and I couldn’t tell anyone or get relief. The following post is something I wrote while trying to exercise my guilt over being the “normal child,” the child who got to stay home with mom and dad, the child who had friends and who grew up to have power and choices. It wasn’t so great living at home though, my mother was an alchoholic with mental health problems. My home and childhood was a scary and unpredictable and often I was glad that Laurie was not there. More guilt. When she was home and my mother was drinking and ranting and raving, Laurie and the dog would come into my room to hide and for protection. Yes, it was better that she didn’t live at home. But that’s not true…she should have been at home with her family. I missed her so much but couldn’t help her. I couldn’t even help myself.
My earliest memories of my sister revolve around a very traumatic event that ultimately led to our separation. It was 1961, she was five and I was four years old. I had begun to see the differences between us. Unfortunately, others did too.
I can see myself squatting near the grass on my neighbor’s side of the yard. I gripped the fence with tiny hands watching my sister play with her doll on our swings. I was not alone. A crowd of neighborhood boys had gathered to watch too. Laurie seemed to attract attention from the kids on the block by the funny sounds she made, a language of her own, a mixture of babble, grunts, and words. She played alone, without notice of her audience peering through the gate. She played with her only friend, her doll. Our yard was a postage stamp, four walls of chain link fence that kept Laurie contained, safe, and within eyesight of my mother from the bathroom window. Mom could get her cleaning done and peek out the window from time to time to check on Laurie. I was free to run the neighborhood with the kids. I was free from guard duty of my sister by the lock on the fence gate door that kept her from wandering away. I sat quietly and watched the scene unfold. It haunts me.
At first the kids just laughed at Laurie as they listened to the sounds she made and watched her wave her hands close to her body as she often did when excited. The boys started to call her name to get her attention and egg her on to make more sounds and gestures. When she didn’t respond, they called even louder, “Hey Retard, come mere! They mimicked her grunts and hand gestures calling out to her more loudly, more urgently. I sat quietly, expectantly, watching my sister through their eyes. Suddenly, a boy picked up a rock and threw it over the fence. Then another boy threw a rock. Soon all of the boys were picking up stones and rocks hurling them over the fence at her. They yelled her name, “Laurie, hey Laurie, hey Retard”, grunting at her, throwing stone after stone, laughing as she ran from side to side of the yard like a caged animal trying to escape the sting of the rocks. I can’t remember when or if I found my voice or when I rose to my feet to get my mother. One of the rocks hit Laurie on her forehead and down she dropped, her body seemingly lifeless. Blood oozed from her head and the boys ran off.
My mother picked Laurie up from the ground and carried her still little body, crying hysterically, “Look what they did to my baby!.” Mom carried Laurie to each of the boys homes until one neighbor made her sit down and called an ambulance.
It was only a few months afterwards that my mom and dad went on a trip one afternoon with Laurie leaving me to stay with the neighbor overnight. The next day my mom and dad came home but Laurie wasn’t with them. My mother laid her head on the kitchen table and sobbed violently saying over and over, “they took my baby”. Years later I would learn that it was the stoning of Laurie that persuaded my parents to make the most painful decision of their lives, to place her at Ebensberg State Hospital. That marked the beginning of a melancholy that settled in our home. It was the beginning of the end of my childhood. It was the dawn of a dark, unhappy, lonely time when Laurie went away.