One mom shares experience with DS
October 23rd, 2008
Writing in Parenting Magazine, Connecticut writer Hallie Levine Sklar tells how she came to accept her four-month-old daughter Johanna.
She and her husband Jamie had been “ambivalent parents,” self-absorbed and career-driven. When they found out after Johanna’s birth that their baby had Down syndrome, they were sure they wouldn’t be able to handle it.
But as time went by, they fell in love with their baby and realized that they had nothing to fear — “other than outdated stereotypes.” An excerpt:
For now, we’re taking life day by day. And while my days are filled with coos and giggles, sometimes at night, after she’s asleep, I find myself searching the Internet for information about Down syndrome. What I read fills me with dread: talk of increased risk of childhood leukemia, limited job opportunities, early cognitive decline, shortened life spans. It’s at these moments that I race into Johanna’s nursery and pick her up. As I feel her body, warm, plump, and soft against mine, I realize once again that she’s not some statistic in a medical textbook. She’s my baby, our Johanna.
The story is accompanied by galleries of photos of babies with Down syndrome, submitted by readers in honor of National Down Syndrome Awareness Month.
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October 24th, 2008 at 4:25 pm
Message for Hallie. Enjoy your baby and do not be scared about the medical stuff about leukemia . yes there is a higher risk but most people with Ds do not get it, and those who do nearly all make a good recovery.
Don’t be scared about shortened life spans. These statistics are our of date and based on an average life expectancy by adding in those babies in the past who had heart defects and did not survive. Nowadays , the outlook is much better for babies with heart defects and there are more and more cases being reported of people with DS living into their 60s and 70s.
My daughter with DS is 29 and lives a very full and happy life, despite having very ordinary common or garden DS, and with no particular academic triumphs. Yet she travels alone by public transport in a city of 8 million people and lives in her own flat with support, and enjoys being an eternal student.
Catherine
October 23rd, 2008 at 3:42 pm
Ultimately, at the end of the day, it’s my daughter who changes everything. She’s the one that won me over, who’s the authority on love and life and what’s really important. I do so understand that passage.