Joy. Love. Delight. Exuberant. Love. Blessing. Fun. Did I say love?
These are words most parents of a child with Down syndrome use to describe their lives.
However, they aren’t necessarily the first words they use. . . .
Marcia Van Riper, RN, PhD, is chair of the Family Health Division of the University of North Carolina School of Nursing. Early in her studies, she explored parents’ response to the birth of a child with Down syndrome (DS). One mother told her, “When a child is conceived, a dream is born. The dream image [is of] a healthy, strong, and clever child who with confidence and success fulfills a parent’s desire to bear a child. . . . When we received the news that [our daughter] had DS, it was as if the child of our dreams had died.”
Grief for lost expectations can’t and shouldn’t be minimized. But the reality is nearly all parents grow along with their child to learn more about love and life (there’s that word love again) than they ever expected.
This isnt Pollyanna sentiment. Riper wrote, This study’s most important finding was that the families I interviewed did not sound like the families of children with DS I had read about in the literature. That is, rather than using words like burden, tragedy, and suffering to describe their child and the experience of raising a child with DS, these parents used words like joy, challenge, and thriving. The families I interviewed consistently reported that the positive consequences associated with raising a child with DS far outweighed the negative consequences.
Tragically, the public’s perception of life with Down syndrome is far different. One survey of expectant parents showed that many had already made up their minds to abort if pre-natal testing showed Down syndrome. Once response hit me especially hard:
It’s devastating, it’s a waste, all the love that goes into kids like that.
A waste of all that love?! When is love ever wasted? When it comes to individuals with Down syndrome, theyre notorious for giving you back that love tenfold.
Sadly, many Americans dont know this. A vast majority of pregnant women choose abortion if testing indicates a preborn child with Down syndrome. Doctors often assume parents will abort and dont even offer resources to help them choose life. This denies parents the experience of basking in the unconditional love children with Down syndrome so freely give.
Those who counsel for abortion need to get educated and spread the good news! In a Boston Childrens Hospital survey of 2,044 parents and guardians, 79 percent reported their outlook on life is more positive because of their child with Down syndrome. Among siblings 12 and older, 97 percent said they are proud of their brother or sister with Down syndrome and 88 percent believe having a sibling with Down syndrome has made them better people.
Isn’t that what love does—make us better people?
The range of abilities among children with Down syndrome widely varies, and I dont pretend every picture is rosy. Some face serious medical complications. The photo at left is from an episode of our TV program Facing Life Head-On that showed how one group of girls with varying degrees of disability were able to mainstream.
As overwhelming as a Down syndrome diagnosis may first appear, it almost always opens up a world where love has no boundaries. Doctors and others must set aside their biases and assumptions and help open that world to expecting parents. The more resources parents have, the more likely they are to believe not only in their ability to meet the challenges of Down syndrome but also in their childs capacity to learn and growto believe that ahead of them awaits joy, delight, strength, reward, blessing and love. Especially love.
During National Down Syndrome Awareness Month you can help parents or expecting parents realistically deal with a Down syndrome diagnosis. This link on our website has a TON of resources.
Go and spread the love!
Loving ALL of God’s precious babies,
Bradley Mattes Executive Director Life Issues Institute