The Ever Present Question

I've had several folks ask "Did you know?" since Nathan was born.  What they want to know is whether or not we knew ahead of time that Nathan would be born with Down syndrome.  I'm guessing that for every person that feels comfortable asking, there is another person that isn't, but still wants to know the answer, so I'll cover that here.  The answer is no.  We did not have any idea.  We rejected all prenatal testing other than the ultrasounds (I had three - at 8, 18, and 31 weeks).  Yes, my doctor did offer amniocentesis.  We declined.

[The rest of this post will be about what I believe, but it's not possible for me to state what I believe without delving into what many deem to be political.  If you don't think you're going to like what I have to say, please read it with the understanding that I don't desire and won't participate in a debate.]  

Conventional wisdom says that if you're forty years old and pregnant, you do the testing.  Doctors presume you want it (even if you're under forty) and offer it as a matter of course.  Blood is drawn and sent to a lab with barely a thought.  I did that with two prior pregnancies, but elected not to with Nathan.  It's not because I naively trusted that everything would be alright - two screening tests on two previous pregnancies had each yielded scary results, the first of which ended in an amniocentesis and a diagnosis using those dreaded words "not compatible with life".  I knew what could happen - knew it in a very personal way.  In my prior pregnancies, I opted for testing so I could "prepare" in the event of bad news.  After having Sarah Kate, I realized that there are so many things that can go wrong for which you can't prepare, and those prenatal tests give you a false sense of control and security (or worry and anguish).

So...knowing what I know now, would I do it again, or would I choose the testing?  I absolutely would not choose testing.  I would have worried myself sick and been stressed every waking minute if I had known about Nathan's diagnosis (and I didn't sleep much while pregnant as it was, so that would have been a lot of waking minutes!)  I will be forever grateful that I was blissfully unaware for all those months.  Yes, it was something of a shock, but I never once wavered in my love for this child.  I don't know if that's because God gave me peace when I needed it or if it was something more deeply maternal at work, but by the time I heard the words "Down syndrome" uttered I had already seen and fallen in love with my baby boy.

The first moment I saw my baby boy

After arriving home from the hospital, I began to research Down syndrome in earnest.  I have known some individuals with Ds and had a vague knowledge of some of the health issues that the extra 21st chromosome can cause, but I knew I had lots to learn.  One statistic that I discovered during my research was that nine out of every ten cases diagnosed prenatally are aborted.  When I read that, I felt sick to my stomach. [Feel free to do your own research - I have seen numbers anywhere from 85-93%.]  It was at that point that I began to consider the decision to skip the testing as not just a personal choice, but a statement in favor of life.  It's not been so long ago that children with Down syndrome were shut away from society, but that's simply not the case anymore, and I find it tragic that now, when so many more options are available to individuals with Ds, so many of them are not being permitted to live.  I can only assume that people make that choice because they feel they "can't handle it".

Over the years, I have had people express a variety of things to me - that I am special, strong, inspiring, amazing, etc., because of the special needs parent life that I lead.  I've heard it again since Nathan was born, and I know that there are people who are probably thinking (even if they aren't saying it) that they "could never do what I do" or that they "just couldn't handle it" if they were me.  Hogwash.  While I'd love to believe that there is something about me that is special or amazing, the truth is that if there is anything special or amazing about me, it is because of my circumstances and the simple fact that I am a mother.  Mothers all over the world love their children unconditionally and become better people because of them.  Just because some of us are just blessed with an advanced degree in mothering doesn't mean any loving mother wouldn't rise to the occasion.  So I'll continue to smile and bask in the glow of being complimented as special and amazing (who doesn't love a compliment?), but the truth is that any parent is capable of doing what I do.


So if you ever have a friend or family member that is offered the advanced degree in mothering, encourage her to take it.  Yes, it'll be tough, but it's so worth it.


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