I really despise the norms of culture – i.e., what polite society thinks I or others should or should not be doing.
My earliest exposure to it was with my cousin. She was born with Down’s syndrome in the 1960’s. At least one doctor, maybe more, was very clear with my aunt that the fault rested with her. Why? Because she was thirty when she had my cousin. Yes, thirty years old. That was the reason my cousin had Downs syndrome.
Today, that’s laughable. Many women are having babies at the age or thirty or older. They are more at risk for this, but their age is not the sole factor behind it.
In the 1960’s though, families were pressured to put such a child away where someone else could take of them. My aunt and uncle did not do that. They kept her at home. Had this been another decade later, my aunt and uncle probably would have had intense pressure to have an abortion. I doubt they would have done that either.
My cousin was moderately impaired. My aunt once said to my mother that once upon a time, she wished her children would never grow up. She didn’t feel that way anymore after having a child who would never grow up. But my cousin was very loved, by her parents and siblings, and by her extended family. She was one of us.
My aunt and uncle, as well as my aunt’s older brother, got involved with a wonderful organization, the Ray Graham Association, whose motto is “empowering people with disabilities”. My cousin died at the age of six following open-heart surgery, but my aunt’s older brother continued his involvement with the Association for years. Much later in my life, I had two co-workers with family members who were beneficiaries of the work of the Ray Graham Association. It made a huge difference in their lives.
But this is why I think trying to meet the expectations of a culture is a pile of moose muffins (to quote Colonel Sherman Potter). What is normal is subject to change. It’s subject to the whim of whoever thinks they know what you should do with your life better than you do. What’s right today is wrong tomorrow and vice-versa. And ignorance doesn’t stop people from making you feel small.
I am proud of my aunt and uncle for carefully picking their way through the mine fields of decisions, lack of knowledge, and staying true to their Christian beliefs. I am proud of my cousins for loving their sister. I am proud of my Mom for not being ashamed of grieving my cousin’s death. I am proud of my uncle who continued working with this great organization, even though it wasn’t his child who was impacted by their help and assistance.
And I am proud of each and every one of us who follows our heart, makes our own decisions, and doesn’t let our culture dictate what they should and shouldn’t be doing. It’s not easy, but practice helps.
Isn’t she a cutie? She had a biggest smile you ever saw on a small child.
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A Daily Life 
June 29, 2011 at 6:54 am
A touching story. Most women of my age bracket thought nothing of having children in their 30s but I definitely picked up the ‘you had better have kids before turning 30’ vibe. As a public school music teacher I had many children mainstreamed into my classes for whom the experience was not the best setting for them, their peers, or me as a teacher. But I always tried to give them my all I could. I doubted I would be a good parent to a special needs child. I have admiration for all the people you mention who accepted & made a good life for your cousin.
June 30, 2011 at 12:40 am
Thanks for your thoughtful reply. It’s a story I’ve wanted to tell for a while – so many things happened that were right. I was so happy my daughter didn’t have problems – I don’t know how I would have handled it either, although my aunt would probably have advised me totake it one day at a time and do the best you can. For sure she didn’t have any experience with this before it happened.
June 29, 2011 at 7:35 pm
I’m back… :)
Love your story. Feel exactly as you do. Recently saw a beautiful mom lovingly, and proudly, fawn over her down-syndrom child during Mass one Sunday at church. I smiled the whole while I gazed upon such a Christ-like scene.
hugs for your story…and hugs for your continuing friendship…hugmamma. ;)
June 30, 2011 at 12:34 am
Thanks so much! I’ve been reading your blog and all you adventures – whew! Glad you’re finally getting back to a more normal life.
July 5, 2011 at 8:34 pm
Never thought it would happen. When I spoke with my daughter last night, I asked her if what happened seemed like it was only in our imaginations. She most definitely replied “Uh, uh. It was real alright. Not a figment of my imagination!” Had to agree…
never want to go there again…ever! ;)
June 29, 2011 at 7:51 pm
My brother-in-law’s family did the same in the 1960’s, although they were pressured to put Jimmy away. He now lives with my husband’s sister and her husband. He is doing well.
Thanks for the message about the Spyder. A few people recommended that one. Your husband’s work is beautiful!
June 30, 2011 at 12:37 am
I shared this story with a friend the day before I wrote it. He also has an older brother with Down’s syndrome and his parents did the same thing. They realized a few years later it was a mistake and brought his brother back home. It’s hard to resist doing what all the experts advise when you think they know better than you do.
July 13, 2011 at 6:38 am
This is a beautiful and touching post. I hope you will allow me to share it.
July 13, 2011 at 2:57 pm
You are welcome to share it!! Thanks for stopping by.
July 31, 2011 at 7:20 am
Very nice post and what a wonderful way to honor your cousin. I volunteered for Special Olympics this year and had one of the best experiences I have had in years. Special children are truly special and have a lot to teach me.
July 31, 2011 at 10:55 pm
I agree with you. A friend of mine described it as going on a journey, but taking the train instead of a plane. You still get to where you’re going, but in a different way.
July 31, 2011 at 8:11 am
I liked your post. Yea, you’re right. We come into this world wanting love and would do anything to belong. We would sell one another, agree to ridiculous laws and customs and even sing Harmonized Hitler Marches, The pull of cultural norms is good and bad. We want a society that reinforces good actions and ideas. Sometimes though the norm is based in ignorance, lies, deceit and vanity. Unfortunately for us we have to micromanage our way through that stuff.
You’re also right that management, society, and culture is essentially a multi-headed Medusa. What is true one day is not the next, what is real today in false tomorrow. Each Medusa head takes its turn leading and therefore introduces its new arbrutary rules. If we stop and think about it, that is why there is no actual “THEY.” When I hear people say “they” did this to me, “they” did this to us I just laugh. Again there is no “THEY”
Actually, each and every issue in life should be analyzed and completely mulled over so as to ensure the right action. I’ve often thought that maybe there should be an adult test. At 18 we would sit down with pen and paper and list issues to decide is this right, is this what I want, is this good? Or is this just what I’ve been told? Issues like abortion, civil rights, environment, sexual orientation, evolution, and…….
Sorry, I want off on an idealized flight there for a minute. Still it’s not to late. Should we look at our own actions today, now and admit the areas in our life in which we just go along to get along. Thanks, let me finish with this quote from Jung:
The Great events of world history are, at bottom, profoundly unimportant. In the last analysis, the essential thing is the life of the individual.
This alone makes history, here alone do the great transformations first take place, and the whole future, the whole history of the world, ultimately spring as a gigantic summation from these hidden sources in individuals.
In our most private and most subjective lives we are not only the passive witnesses of our age, and it’s sufferers, but also its makers. We make our own epoch.
C. G. Jung 1934
Collected Works, Civilization in Transition
CW 10 para.315
July 31, 2011 at 10:42 pm
Thank you for your thoughtful reply – the idealized flight was insightful as well. I’m not sure I can do justice to it, other than to say that you raise many excellent points. One of the big ones is how we go along just to get along.
I’ve had several co-workers share with me that they had a sibling who was handicapped and their parents did put them into an institution. Each of them took their child back out and assumed responsibility for them. It’s hard to buck the system, especially 40 years ago when there was less knowledge and less sharing of information. The Internet has really helped with not only hard core knowledge, but the softer skills of actually living life itself, especially when faced with something new in our own life.
It is pretty hard at the age of 18 to do this – it takes a long time after that to truly become our own person.
You are also correct about blaming things on the mysterious “they did this and they did that”. I see that play out in my own family. Puh-leaze – at some point you have to take responsibility for what you do and what you say.
Thanks for coming by to visit. Your blog was very interesting as well. I visited is pretty extensively before approving your comment – I wasn’t quite sure what to make of your long response to my blog. I’m not sure I agree with everything you have there, but you have a lot of very good stuff. Clearly you take time to think things through for yourself.
I am honored that you came by and left a note. I hope that you stop by again.
November 27, 2011 at 1:43 pm
Ya know I didn’t read this when you initially posted it…wow, brought back some wonderful memories of Janine! I used to baby sit her! She was so awesome…At one point in my life I had hoped to be a “special ed” teacher. In high school I volunteered at a place of business for “special adults” in Elkhorn Wisc. It was an awesome experience! Somewhere horses and animals got the best of me…and the rest was history! Anyway, I remember at one point in my life, wishing…actually wishing that I would have a child with downs syndrom….That’s how absolutely normal I felt having a cousin with down’s syndrom was….We were all blessed having known and loving her!
November 28, 2011 at 9:45 pm
We really were blessed. She impacted all of our lives for the better. If she were still alive, I’m sure she’d still be a significant part of our lives. And your Dad did a lot of good things on her behalf for years after she was gone.