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Non-Invasive Prenatal Screening – What’s the big deal?

I came across this article today. This is something I have thought about quite often over the last 2 years and wanted to share some of them. 

From the outside looking in, Non-Invasive Prenatal Screening seems like the next logical advancement in healthcare technology. There have been ways to screen babies in the womb for quite some time now, however we can now do this with little to no risk to the mother. Because of the low risk many doctors are recommending or requiring mothers to get screened during the first stages of their pregnancy. The most common things that the screen tests for is the presence of trisomy (a third copy of a chromosome). Trisomy 21 is the proper term for Down syndrome, as it is caused by a 3^rd copy of the 21^st chromosome.

This is where things go from logical to severely emotional and ethical because humans have to pick up where the science and technology stops.

When a mother gets a prenatal diagnosis that the child they are carrying potentially has one of these syndromes they are presented with a choice. Continue with the pregnancy or terminate. In the US, when presented with a prenatal diagnosis of Down syndromeroughly 75-80% of mothers, on average, decided to terminate their child, thosenumbers only increase when looking at the rest of the world.

Some of this is due to outdated information that the doctors are providing or that can be found online about the kind of expectations you can, and should have for a person with Down syndrome. But there are wonderful organizations out there that work so very hard every day to fight those stereotypes and educate families and their doctors.

So what else could it be?

I think we all have ourselves to blame. After you get married people start asking “when are you going to have kids?”. Telling you that it is the best thing that has ever happened to them and start sharing some of the joyous moments. As Americans we are expected to grow up and chase the American Dream. Own a house, take care of your yard and raise a perfect family complete with mischievous little boys and adorable little girls. Then as parents it is our job to turn that little boy into a driven successful young man; and raise a strong, independent, successful young woman.

From the moment that you decide you are “ready” to have children (I don’t think any of us are ever truly ready!) you start dreaming about what kind of life they may have, all of the things that you will do together and who they will grow up to be.

Getting that diagnosis is life altering. I can’t speak to what it is like to get a prenatal diagnosis, but I can still feel what it was like when we got Taylor’s diagnosis. At first, you think all of your hopes and dreams for your child are forever gone. That can rock you to your core. After we got the official diagnosis when Taylor’s blood work came back, we too were given an option. One of the first things that the Geneticist (the one that came in to give us the official diagnosis) talked to us about is adoption agencies that specialize in placing children with Down syndrome in homes. We didn’t ask for this information. It was offered because the assumption is that people do not want these children. It wasn’t until we said we were not interested in giving our child away that they started talking about what kind of future she could have, and who we can reach out to for help and guidance.

So what’s the big deal? These are children. Selected termination of a child due to a prenatal diagnosis is genocide. Regardless if you are pro-life or pro-choice. If your decision is based on the genetic makeup of your child it is genocide.

These children will grow up. They will have hopes and dreams of their own. They will go on to accomplish their goals and live full, wonderful lives. Who are we to deny that because things may be harder on us as parents?

 Part of their lives will be tough, unfair and they may feel the sting of stereotypes. How is that different than your life?

What we realized after receiving Taylors diagnosis is that our dreams for her did not cease to exist, they just needed to be shifted. We remembered that it is about Taylor’s hopes and dreams, not ours.

Raising my children will be my greatest accomplishment and contribution to this world. That would have been true even if Taylor did not have Down syndrome. I would not wish that anyone be put into a situation where you feel pressure to terminate your child. May God be with those faced with that in the future.  

A quick update!

Hello again!
I am guessing many of you have wondered where we have been and what we have been up to since it has been awhile since our last blog post. We haven't meant to be so quite on our little blog, but Taylor has kept us busy!

Our crazy little toddler has been keeping us on our toes with all of her news skills. Taylor is climbing up the first two steps of our stairs, crawling around the house like a maniac, tormenting Erwin, and signing up a storm! She has start to sign to us without us prompting her, so now we know if she is tired, hungry or wants more of something. It is pretty awesome!

Yesterday was World Down Syndrome Day and we celebrated Taylor with style! Brian had a fundraiser at work for his D.A.D.S. group (Dads Appreciating Down Syndrome) and raised just over $1,000. Then after work we had a pizza party with friends and Taylor knew she was the center of attention. Life is good and Taylor is amazing!

Bath time

Taylor is patiently waiting for her bath to fill up!