‘The Down Syndrome Diary.’
26 families, 7 years, 4 countries: The story of what it’s like to have a child with Down syndrome.
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Jamie Freeman of Chesterfield, MI, is a master at training other V Teamers through her work with the Learning and Development team. This is a story of her own learning and how she works to share it with others.
Seven years ago, Jamie gave birth to a boy, Benjamin. At 16 weeks, doctors told Jamie and her husband that there was a strong possibility that Benjamin had Down syndrome. They were presented with a 30-page packet about what to expect in the months and years ahead. “It was very overwhelming and it was very doom and gloom,” she remembered.
Fortunately, Jamie went online and found blogs written by other parents of Down Syndrome kids. She gained comfort when she read that, while some things will be very hard when raising a child with a disability, there will also be enormous blessings.
Years later, Jamie found this to be true. “I was thinking about how much it would have helped if I had known what I know now, that first day,” she said.
So Jamie wrote down what she would have wanted her younger self to know, then passed on her diary to another Down parent. Then the journal was passed on again and again. Eventually, the collection of personal stories, pictures and observations traveled the world for seven years, spending time with 26 families in four different countries.
When Jamie got the diary back, she had it published as a book, “The Down Syndrome Diary.” She sells copies through her non-profit to raise money for additional books that she donates to hospitals and doctor’s offices to be a resource for other new parents.
“Fear of the unknown is the most debilitating thing on Earth, and I’m hoping that by putting out a book like this, that it is helping people be aware of Down syndrome,” said Jamie.
Thanks to Jamie and Benjamin for giving all of us a valuable perspective on what matters most.