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Martha Beck recalls how she reacted to her son’s Down syndrome diagnosis.
Martha Beck:
So I was about half way through my doctoral program at Harvard when my second child was prenatally diagnosed with Down syndrome at about six months of gestation. So it was very late in the pregnancy.
There was still a window of opportunity to terminate the pregnancy but I was very bonded with the baby and chose not to, although I wouldn’t, if somebody out there has made a different choice I am completely on your team. This is an individual choice from my perspective.
There I was stuck in a Harvard community that glorified intellect and now my son was guaranteed to have a life that was very different from a Harvard student’s.
So I had to question a lot of my biases about what made a human life worth living.
And what I realized as I looked around Harvard was here were all these really, really smart, successful people and not all of them were happy, in fact the majority of them seemed to have just as much unhappiness as anybody else.
So I began to think that the experience of joy is actually the deepest reason for us to exist at all. Emerson said that, beauty is its own excuse for being and joy is beauty felt. So joy is its own excuse for being.
And I knew in my heart, in my gut and from my experience that people who have all kinds of disabilities can experience joy to an extent that is as great or greater than anyone else.
So my son was born two months later. I was absolutely terrified and he proceeded to educate me, although I had severe learning disabilities, in the area of joy, mindfulness, presence and love.
I now think that his birth saved my life in many ways and I was told at the time that I was throwing my life away which turned out to be true. It’s just that the life I was throwing away didn’t really work for me and the life I got back is truly, truly blessed.
So if you have had a loss or a diagnosis that is terrifying to you right now, just question your biases and give it time.
Sometimes the things that we think are going to destroy us are actually just opening a door so that we can experience genuine happiness.
About Martha Beck:
Martha Beck, Ph.D., is a writer and life coach who specializes in helping people design satisfying and meaningful life experiences. She holds a bachelor's degree in East Asian Studies and master's and Ph.D. degrees in sociology, all from Harvard University. She has published academic books and articles on a variety of social science and business topics.
Her non-academic books include the New York Times bestsellers “Expecting Adam” and “Leaving the Saints,” as well as “Finding Your Own North Star: Claiming the Life You Were Meant to Live” and her newest book, “Steering by Starlight.” Dr. Beck has also been a contributing editor for many popular magazines, including Real Simple and Redbook, and is currently a columnist for O, the Oprah Magazine.
Add a Comment5 Comments
So many times change or difference is just terrifying. I love that you could call back to those first feelings, put them in context, and then pull them forward to today with a different perspective. Thank you.
June 14, 2010 - 8:10amThis Comment
I came across this whilst doing some research on Down Syndrome for work. I am currently finishing my undergraduate degree in psychology and doing some work experience with DS children as well as something extra in psychiatric health. I was feeling very down this week, because the randomness of things and the way everything can hit anyone in life has just hit home, after seeing certain things. This writing made me smile and made me learn and cry with joy. Let it be a life lesson to all of us.
June 11, 2010 - 1:01pmThis Comment
I would never support anyone's choice to abort a baby diagnosed with DS and I'm disapointed the Dr. Beck would take that stand. People are so frightened of having a child with DS and what they don't realize is the tremendous joy and happiness a child with DS brings to a family. And, yes, I have a child with DS.
May 27, 2010 - 9:43pmThis Comment
Thanks for sharing your thoughts on your reaction to your son's Down syndrome diagnosis.
Wonder if you would share your thoughts on the research efforts ongoing in the area of Ds cognitive impairment.
How as a mom would you view the option of therapies that would assist memory and learning in persons with Down syndrome?
to learn more: http://www.researchds.org
May 27, 2010 - 12:45pmThis Comment
Hi Anonymous
Thank you for sharing this information. It looks interesting. I'm always glad to see research done on quality of life issues instead of just the next new medication. There is room for both, but quality of life seems to get shortchanged.
Thank you for visiting the site!
May 28, 2010 - 6:33amThis Comment