Eco Fabulous Family

New prenatal tests are giving more and more families a prenatal diagnosis of Down syndrome. Some parents are happy to have the extra time to prepare for everything an extra chromosome means.  For other parents the diagnosis will result in termination of the pregnancy.  I have heard many officials state they don’t believe the abortion rate will go up as a result of these tests.  I say bull.  I am certain more mothers will choose to abort.

To me this is not an abortion issue on the broader scale. It is an issue of aborting children solely on the basis of a Down syndrome diagnosis. I don’t usually share these types of feeling because friends and family may not understand or have experience with how important this issue is. Many of you reading this did have that prenatal testing with the idea of aborting your baby if he or she was not perfect. I am sure some of you did abort a baby with a Ds diagnosis. This is not to shame you. The more we know the better we do.

Below is a segment from 60 Minutes in New Zealand. A father in the video puts it beautiful when he says “I want my daughter to live in a society that values her life.” He hit the nail on the head. When people abort only because of this diagnosis they are saying that people with Down syndrome are less than other people. I will not accept that. Froggie is one of the most beautiful people I have ever met. He has so much to offer this world. There IS a place in this world for him and others like him. He has the same value as any other child.

I have never publicly stated my views on abortion because it just divides and causes arguments. I will say I am completely against people aborting simply because of a Ds diagnosis.  Unless there is another condition that is not compatible with life people should not be able to abort babies they perceive as less than perfect (cause Froggie is perfect). To me this is the same as aborting a baby because the baby will have green eyes instead of blue or brown hair instead of red. We don’t get to choose who are children are.  We do get the honor of nurturing them, guiding them, loving them and raising adults we can be proud of.

Froggie being worn on my back on Christmas Eve!

If someone has a diagnosis of Down syndrome there is support.  This website has lots of information: http://downsyndromepregnancy.org/

If you are the current parent of a child or adult with Ds in California check out CAPODs: https://www.facebook.com/groups/CAPODS/

If you choose not to keep your child Reece’s Rainbow is an organization dedicated to placing children with Ds.  There are so many families waiting for child with Ds!  http://reecesrainbow.org/

Having a child with Ds is not what I planned. I had so many incorrect assumptions about what a person with Ds was capable of and what they were like.  I am so blessed to be a part of this community.  When I was pregnant someone said to me: “Welcome to the best community you never knew you wanted to be a part of” and I find myself saying those same words when I speak with new families.  It is so true!

My Diagnosis Story – Down syndrome

Someone recently asked me to tell our diagnosis story.  I thought this was interesting.  I had heard of birth stories but I had never heard of a diagnosis story.  Even when Bug was diagnosed with autism no one asked for the story.

My story started long before we were officially told.

When Chris and I started our journey to create a family we discussed what would happen if we found out we were pregnant with a child with Down syndrome (Ds).  Yes, we actually had that conversation 10 years before Froggie was born.  We had it several times.  We always said that if we were to find out we were going to have a child with Ds we would have the baby.  We would figure it out.  We would deal with it.  Little did we know we would be blessed with Patrick.

I got pregnant with Patrick on April 30th, 2012.  I really am that neurotic that I can tell you the date each of my children were conceived.  Yes, I am a bit crazy!

By mid-June I was having dreams of a little boy with Ds.  I know you all will think I am crazy, except for the people who I told.    By July I was convinced I was having a baby with Down syndrome. I called several friends and told them the baby had Ds, they thought I was being paranoid.  I emailed and called a few Moms I knew who had children with Ds and told them I was having a baby with Ds.  They thought I was a bit strange (and they were right) since I did not have any diagnostic tests done yet.  At the beginning of August we received blood work showing we had a 1 in 6 chance of having a baby with Ds.  I was scared, no terrified.  The doctor offered an amino to confirm.  After much discussion we decided to have the amino.  My doctor has done several aminos a day for years and the risk of miscarriage was low with him.  I am a Type A and needed to know so I could plan and prepare.  Besides, the state of California was going to pay for it!  Wow!

Um, I was a bit naïve.  I did not realize why they pay for it.  I even asked my doctor later on in my pregnancy and he said to follow the money. He was right.  What is cheaper for the state?

The amino was performed on Aug 15, 2012 and the results came in on Aug. 27, 2012.  It was about 10:00 am and I was home with Chris.  Bug and Peanut were at school.  The phone rang and it was my doctors nurse.  She asked where I was and I told her at home and she said “I’m sorry, the baby does have Down syndrome”.  I told her thank you and hung up.  I cried, hard.  Chris held me and we grieved. It was horrible. Since I had already been researching I knew there could be heart problems.  I called her back and asked if the baby’s heart was ok.  She said as far as she knew it was.  That afternoon I took Bug out of school early to give him the news.  I thought he would understand to some degree and wanted to tell him separate from Peanut.  Peanut was only 5 and I was sure would not understand.  Bug didn’t really get it.  Later that day I told Peanut.  He said, “that’s ok, my friend Maddy has Ds”.  Then he said, “it is hard to understand her, will I understand my brother?”.

Then things got really interesting.  Our next appointment we had to see the genetic counselor otherwise the state would not pay the bill for the amino.  I was still very naïve about the state’s motives.  She then presented my options.  I quickly told her we would not have an abortion or place the baby up for adoption.  She continued to talk about abortions and when the cut off date is to have one.  I again told her I did not want to hear it. Chris and I had discussed this and were comfortable with our decision.  After a couple minutes of this I told her F*&% off and walked out.  Chris followed me. I have a knack for putting him in uncomfortable situations.  Later in the pregnancy I complained to my doctor about the genetic counselor and he told me that she complained about me too.  She told him she “was unable to work with that patient”.

I was terrified.  I knew nothing about “Downs” (politically incorrect terminology in the US).  I was fortunate that Peanut goes to an inclusion school and I was quickly and lovingly welcomed into the best community I never knew I wanted to be a part of.  These Moms and Dads hugged me, welcomed me, gave me information, pointed me in the right direction and tried to calm my nerves.

I don’t know what I would have done without Nancy, Christine, Michelle, Jennifer and several others.  After the birth even more Moms were added to my circle.  Today, 6 months after Patrick’s birth I am blessed with a circle of Moms who get it.  Who will be there for me when I need them.  I need to learn to “use” them more.

Getting a prenatal diagnosis is so scary. I read everything I could.  I called people, emailed people and prayed.  For some reason it was very important to me to tell our family and friends.  I wanted everyone to know so there was no awkwardness after the baby was born.

One friend, with a little girl with Ds, told me to relax.  She said at the end of the day you are having a BABY.  This baby will be just like your other babies.  He will eat, sleep and poop and that I knew what to do with a baby.  That changed things for me.  That one simple sentence (or two?) gave me something to hang onto.  It really made a difference.

Froggie is the most amazing, sweet, cuddly and special child.  I truly am blessed to be his mother.  He breaks stereotypes everyday and makes me proud.  I honestly would be thrilled to have another with Down syndrome.  I am not just saying that.  This is an amazing journey and our lives are better for it.

Not the best picture but there are so few of me with him…this is all I could find!