Saturday, March 6, 2010

The Only Thing To Fear is Fear Itself

EDITOR'S NOTE: This post originally appeared on Welcome to Illinois on October 2, 2008. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

* * * * *

Given the current economic climate it is perhaps appropriate to paraphrase Franklin D. Roosevelt, although I am not referring to the current financial crisis but a prenatal diagnosis of Down’s syndrome.

Now that our little boy has been born it seems strange to think back on all the fear and nervousness that we went through between his diagnosis in March and his arrival two weeks ago (the story of which can be found at Waking up in Illinois).

In my last update to that page I wrote that the fact that he has Down’s syndrome has quickly become irrelevant since his birth. I thought it was worth explaining what I meant by that.

Between the diagnosis in March and his arrival in September the only thing we knew about our little boy was that he had Down’s syndrome (we didn’t even know he was a boy).

In the circumstances, I think it was natural that, despite our best efforts to the contrary, we came to think of Down’s syndrome as a defining characteristic. Now that he has arrived, Down’s syndrome is still part of who he is but seems much less significant; like the colour of his hair.

Of course we have been lucky that he has not had any of the physical problems associated with Down’s syndrome – such as floppiness, heart problems or digestive difficulties. Perhaps we would feel differently if he did have any of the associated problems, but I’m not sure it would have changed things significantly.

I came a cross a blog recently written by a woman who had been prompted to start a blog to record her thoughts after her grandchild was prenatally diagnosed with Down’s syndrome. My advice to her, and anyone else in the same situation, would be not to focus too much on the potential problems.

I think it is important to understand the potential health implications and prepare yourself for the worst, but that does not mean that you should not also consider the best. While there will inevitably be challenges to face in the future our child is proof that babies with Down’s syndrome are more normal than they are abnormal.

I write this not based on blind faith or a belief in the sanctity of human life but from the simple observation that there is really very little that differentiates a baby with Down’s syndrome with any other baby.

That and the fact that when your child opens his eyes for the first time and looks into yours, any doubts and fears suddenly feel much less important than they once did.

It is important therefore to focus not only on the potential Down’s syndrome-related disabilities and symptoms but also the potential abilities and capabilities. I now wish we’d spent more time and energy thinking about the latter, rather than worrying about the former.

This is especially true as I now realise than rather specific disabilities and symptoms, the biggest fear we had in the months leading up to the birth of our son was the fear of the unknown.

The unfortunate truth about ante-natal screening tests is that the statistics and percentages they provide prospective parents with deliver very little in the way of knowledge. As I wrote back in July: “any decision must be made from a position of knowledge and understanding and… test results and statistics unfortunately provide parents with neither.”

In August I noted the negative reaction of one mother to the ante-natal screening process, even though it eventually provided her with the news that her baby did not have Down’s syndrome.

“I couldn’t help thinking about how stressful the past few weeks had been. It all seemed unnecessary,” she wrote.

I have the same feeling now that our little boy is finally here.