Tuesday, January 25, 2011

Testing for Down syndrome...

What if there was no Kayla?
That’s a question I can’t even comprehend having to answer.

There has been talk of a non-invasive test swirling around for some time now {and has recently been brought into the media again} that will allow expectant mothers to know whether their fetus has Down syndrome. In the first trimester. No amnio needed. You can read more here {Dr. Skotko, the author, by the way has a sister with Down syndrome}.

Shockingly, 92% of all women who currently receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancy…without this upcoming test. So, what does that mean for the future of Down syndrome? Will there be less amazingly wonderful and loving people that have Down syndrome? And why? Because our society views them as “less than perfect”? Or “different”?

Does the fact that Kayla has Down syndrome mean she is not perfect? Does having something “extra” mean she deserves less from her journey? Her life? Our society is perfect…with perfectly “different” people everywhere. Black people, white people, people of different religions, shapes and sizes and abilities…we are all perfect…just the way we were made…just the way we are. We all have different talents and strengths. We all have something amazing to offer this world. We are all here for a reason. Kayla and her more than 400,000 friends living in the United States today with Down syndrome are all different…yet alike. Just like you and I. We all wake up in the morning, setting out for the perfect day…we give, we live, we love…and if we’re lucky, we’re loved back. And I am loved. I am so loved and so in love with my girl with designer genes. My life is perfect. And while Kayla may have Down syndrome and may require a few more doctors appointments, some PT, OT and ST {and a few other alphabetical acronyms in between} and sometimes {but not always} a little extra help in school…she is the same as you and me. She has likes and dislikes, she plays and she learns, she lives and she loves. She lives, teaching me how to live. She loves…showing me how to love…unconditionally…just like she does. Kayla has Down syndrome…and she is perfect. More than perfect…because she has a little something extra. An extra little 21st chromosome.

I can tell you this my friends…If someone told me when I was pregnant that Kayla was going to have Down syndrome, I am not sure how I would have reacted. And my reaction to discovering she had Down syndrome the day she was born? Well, that's a story that will be saved for another day...but this “medical advancement” means much more than increased abortions…it means the possibility of less babies with Down syndrome. Not necessarily because of the diagnosis but sadly because of the way that doctors…yes, doctors…deliver the diagnosis. Some people…mostly people uneducated about Down syndrome and people that have never had the pleasure of knowing and loving someone with Down syndrome…say that this pre-natal screening is a blessing because there will be less people with Down syndrome and therefore less people will have to “suffer”. To those people I say…

Does this look like a face that is suffering to you?
What about this face?
Or this one…
Kayla is a beautiful, intelligent, loving, caring and outgoing little girl that just happens to have Down syndrome. She is not “suffering” because of, “inflicted with” or a “affected” by Down syndrome. She simply has Down syndrome. It does not define who she is or who she will grow up to be. And so to the people that believe the world would be a better place without people with Down syndrome I say this…

My life would not be better without Down syndrome because without Down syndrome I would be without Kayla.

From her beyond perfect face down to her perfect little toes
{within these adorable Chuck Taylor's}...

My Kayla is perfect. Her life is perfect. My life is perfect. And while we may encounter struggles…and difficulties…that is apart of life. Of everyone’s life. Down syndrome or not. We should not focus on what we can’t do in life or we won’t do what we can. Live your life...be happy with who you are and who you were meant to be. These are lessons I plan to teach Kayla…because she deserves to live a happy, fulfilled and enriched life. She will teach people that she is not only living…she is living a perfect life…a happy life…the life she was meant to live...everyday.

How many of us can say we do the same?


  1. Amy, you are an amazing person and mom. We are all lucky to know you and have you in our life. Thanks for sharing your thoughts and helping to spread awareness. Good Bless you and your family!---Kristin Goodman

  2. I believe our children are perfect and we are the ones who are not. We have flaws, we have hang ups, we have predjudices, we have major imperfections as a society. The world would be a far better place if it was filled with more of our "imperfect" children and less intellectual beings like Dr Gosnell for one.
    Maria Olivere

  3. My heart hurts at the possibility of our future world not having "perfect and special" people like your Kayla and my Nicholas. I think back to learning of his diagnosis and how it was presented to me at his birth and think "what a shame those doctors and nurses judged him before he knew him!" If only they could see him now! God is in control, he does not choose us to be the parents of these beautiful children, He does however, give us the strength and love to stand up and fight for them. Keep the blog going Amy!

  4. It's an amazing experience when someone changes your life in a way you never expected and makes you forget what life was like before they were in your world. My daughter loves me in a way I could never describe before she was here. When I look at her I see nothing but love and I would be less of a person without her in my life. Amy, this is my favorite post yet because it speaks to the most important thing in our lives and the possibility that we may not have had the chance to have her.

  5. Rachel called me after she read this blog and told me that I had to read it. I will never forget your message or any of you. Your whole family is "particularly perfect."

  6. Thank you for this. I just found out that I have an increased chance of giving birth to a child with Down Syndrome and have been trying to find out more about it. My husband and I aren't doing any further testing because we will love and welcome our baby with all of our hearts, regardless of the number of chromosomes he or she has. So now we wait. Thank you for your loving and positive outlook. You give me strength and perspective.

  7. "Some people…mostly people uneducated about Down syndrome and people that have never had the pleasure of knowing and loving someone with Down syndrome…say that this pre-natal screening is a blessing because there will be less people with Down syndrome and therefore less people will have to “suffer”."
    I understand what those people thinking the screening is a blessing mean. Less people with Down Syndrome born would mean less people suffering the task of raising kids with DS. Raising a typical kid is daunting enough. Everyone knows that kids with disablities require a huge heap more work and care than typical kids. So even if the only thing some people knew about Down Syndrome is it being a disablity, they know enough that parents of a child with Down Syndrome have a giant heart-wrenching challenge.