This article is taken from the November 2006 issue of the Chronicle Herald. It is one of many great articles written by Renate Lindeman mother of two daughters with Down syndrome. Unfortunately, this side of the story is often not told to expectant mothers upon a prenatal diagnosis. Lives Worth Celebrating
By RENATE LINDEMAN,
LAST YEAR, during Down Syndrome Awareness Week (Nov. 1-7), I gave birth to our baby. Our baby with Down syndrome. And I was very aware, because she was our second child with this syndrome.
A few years ago, when our first baby was born, I was not aware of Down syndrome; in fact, I was totally ignorant. I was devastated when medical staff informed me our baby had Down syndrome. Images of children and adults who couldn’t do anything for themselves shot through my mind.
I was terrified, for me, for my husband, for us, and most of all for our baby’s future. But we had no choice; she was here, she had Down syndrome and she needed our love and support. We had to accept and move on.
I spent months trying to learn anything I could about Down syndrome and the more I learned, the less frightening it became. Very quickly, "the syndrome" wasn’t so overwhelming anymore. Down syndrome didn’t describe our baby; it was only a part of who she was.
Today, many of my fears are gone, and my life has become incredibly rich. By becoming the mother of these special children, I have gained so much. Seeing my daughters struggle to learn a new skill teaches me not to take anything for granted. Helping them in their heroic battle to tackle major obstacles, by breaking them down into small pieces, teaches me to be patient. Seeing them conquer and successfully reach yet another milestone teaches me to revel in the moment.
My relationship has grown strong enough to withstand any storm. Seeing my husband in his role of proud and caring father to our two daughters made me fall in love with him all over again. Meeting many adults with Down syndrome over the last few years has made me hopeful for the future.
I am not trying to paint the perfect picture because my daughters face some serious health and developmental challenges in their lifetime, not to mention society’s insensitivity; but I feel the joys far outweigh the difficulties.
Unfortunately, now that the future is looking increasingly bright for people with Down syndrome, they are also being denied the right to be born. The Canadian government spends millions on screening programs to determine and eliminate Down syndrome, yet nothing is spent on medical research to help people with Down syndrome. Now the federal government is cutting so-called "wasteful" programs, thus creating more barriers for our children to become productive Canadians.
But there is also good news. Despite a lack of funding and interest in Down syndrome from governments, some dedicated scientists are doing exciting new research that will improve the lives of our loved ones. An increasing number of prospective parents are declining tests that are designed to detect (and eliminate) Down syndrome because they believe a life with Down syndrome is worth living. Plus we enjoy the fantastic support of the many teachers, assistants, early interventionists and others who work with our angels.
It’s time everyone realized that people with Down syndrome are an integral part of Canadian society and they are here to stay.
We can make a positive difference by supporting efforts that are being undertaken to improve the lives of our dear ones, because they need it and they deserve it. We need to raise awareness!
This year during Down Syndrome Awareness Week, on Nov. 4 at 1 p.m. at Shubie Park in Dartmouth, my husband, our two children and I will be proudly walking the Buddy Walk together with many other proud families. All over Canada, families will be celebrating lives that are worth living, and I invite you to join us.
Renate Lindeman, proud mother of April and Hazel, lives in Mineville.
