The hard life of living with a Down syndrome child

My precious niece Amelia is popular with my two children.
My precious niece Amelia is popular with my two children and all of our family.

The Washington Post did a front-page story this past Sunday on what it’s like to live with and raise a child with Down syndrome. For those who haven’t been through it, it is an eye-opening look into what is a very difficult life.

Articles like this, of course, are being written because of the attention that Alaska Gov. Sarah Palin has brought to families who have Down syndrome children. These children are all around us, but, as one of the parents in the story says: “Before, kids would stare, but not adults. Everybody’s curious: ‘What’s it like to have a kid with Down syndrome?’ ”

What’s it like for these families is put this way in the article:

Amelia is a blessing to all of our family and to those who meet her.
Amelia is a blessing to all of our family and to those who meet her.

They spend more time in doctors’ offices than most parents. They endure stares from strangers but feel as if they and their children are invisible. They often find themselves fighting for their kids, not just raising them. Earlier, and perhaps more dramatically, they wrestle with the complex emotions that come from knowing that a child might never fulfill the lofty dreams that a parent often envisions before the child’s birth.

But the parents of children who have Down syndrome say that raising a child with a disability can also unlock profound and uplifting truths about themselves, their children and the value of life in ways that others could never see.

In our family, we have a beautiful gift from God named Amelia. She was born with Down syndrome to my wife’s brother and his wife to join their other three children. At age 2 she is still learning to stand on her own and maybe utters a handful of words, but she is world class in drawing tenderness from anyone who encounters her. It is a hard life for her parents as she has needs that press daily on them and her family, but I don’t doubt for a second that they love her every bit as much as her older brothers and sister.

One of the parents in the Washington Post article recounts an encounter with her sister that is a cruel reminder of how many in our society think the cruelest thoughts when it comes to Down syndrome children:

“My sister looked at me and said, ‘Why didn’t you abort her?’ ” Marsili recalled. “I said, ‘What? Because we love her, and she’s my baby, and we love her!’ ‘But you knew,’ my sister said. . . . It was pretty shocking. Even people that close to me.”

It is a dangerous place we’re at when we consider killing to be a solution for children who’s abilities are diminished. If it takes someone like Sarah Palin entering the spotlight for us to expose this kind of thinking — and rebuke it — then I think it is a good thing.

FOR FURTHER INFORMATION:

National Association for Down Syndrome

National Down Syndrome Society

HT: Wesley J. Smith

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