Saturday, October 3, 2009

31 for 21: Diagnosis

We had a prenatal diagnosis with Quinn. I really didn't expect it. It really came out of nowhere. I have talked about this before, but it came over the telephone waking me up from a nap. The words "I'm sorry but the amnio showed that the baby has Down syndrome." At the time I really thought it was the worst thing possible that could have happened to us. I thought my reality was changing for the worst. The floor was sliding out beneath my feet. The thing is that my reality did indeed change. But it became better. I just didn't know it would go that direction at that time - if only I had known. Quinn made our world richer and better. We just had to work through those raw emotions at the time.

The doctors didn't push termination with me - that is a stereotype that they ALL do. Some can and will, but 100% of the doctors are not that way. My doctors were very sensitive. But they didn't really talk much about DS either. They didn't really have a lot of experience in this area themselves - maybe professional experience with delivery, but not the emotional experience of having a child with a disability. I had to educate myself by reading, meeting others, hearing stories. I took on this challenge and my life was made better by it. I needed to hear the beautiful, loving stories of mothers and fathers.

Prenatal diagnosis is not necessarily bad or evil. There is a huge termination rate - way too large and shocking. But all of us receiving prenatal diagnoses aren't about to terminate. It never entered my mind. Sometimes I read something online that really has the flavor of how horrible prenatal diagnosis is. But it doesn't really have to be that way. For me, I was able to prepare and getting my mind in the right spot so that the day of Quinn's birth could be about celebration and love and not bad news. Things would have been radically different if we found out at birth. But for us, her birth was a great day and Down syndrome wasn't mentioned - just how beautiful and healthy she was. Everyone is different and some say that finding out postnatally is the way for them. I just know for me, a prenatal diagnosis was the best thing that could have happened.

What I do think needs to change is the image of those with Down syndrome - how do doctors talk about the diagnosis, how does the media portray those with DS, are families with a child with DS seen as being active and happy. We need to step up and make the DS seen, heard, and known. We need others to see it can actually enrich and strength your life. Our reactions are based on our perception of things - and my reaction was based on my bias against disabilities founded in how our society views disabilities and the limited experiences I had with individuals with disabilities at that time in my life.

Two years ago at this very time I was waiting for my beautiful girl to be born, not knowing - not expecting - that she would have this impact on me. Quinn has shown me things I would have never ever seen without her. Thankfully I have her in my life.

Here is another family's story and they talk about these issues surrounding diagnosis.


1 comment:

  1. Your story is very similar to mine - I think you've talked about that before! But it makes me happy to know there are other moms out there like me, who were happy to have been prepared before the birth of their child. It made it much easier on us, and we were able to really celebrate our Jack's arrival. Happy Down syndrome awareness month Karyn!