Friday, February 1, 2013

Mr. February and Is It Wrong To Publicly Celebrate a Prenatal Diagnosis That Your Child Does Not Have Down Syndrome?

Happy February! Today is a day of happiness and celebration as we celebrate Super Joe being Mr. February in the 2013 Summit County Developmental Disabilities Calendar! His good buddies, Casey and Conner (Miracle Men) shared the Mr. January title and we loved seeing their handsome faces all during January.  This month we are excited to see Super Joe with his beloved preschool teacher at It's All About Kids. If you would like to request a calendar, send an email here

We have been working with Summit DD since Joey was first born. As you may notice in the picture, Joey is in his stander, which is an amazing contraption that is helping him build core strength so that someday (soon we hope!) he will be able to stand on his own and eventually walk on his own! Thanks to the Summit DD, we are able to borrow this incredibly expensive piece of equipment for no charge. Thanks to their Community Project for Inclusion, we have been able to send Joey to the same preschool his older brother Tommy goes to and CPI provides equipment, support and training for the staff so that Joey can participate in all the every day activities that go on at preschool. 

 What has been such a blessing has been all of the teachers, aides, students and parents at It's All About Kids who have made Joey a complete and whole part of the community at school. Having a child who does not really talk and does walk or stand at age 2, I never in my wildest dreams thought that he would be able to not only go to preschool, but to also enjoy it! Every Tuesday and Thursday he goes to school I leave him there with a huge smile on my face and he is thrilled to get to play with his friends. Thank you Summit DD!  Thank you It's All About Kids! Thank you peers and parents!!! Super Joe says thank you also...

Is It Wrong To Publicly Celebrate a Prenatal Diagnosis That Your Child Does Not Have Down Syndrome?

I wrote a blog earlier this week about a segment on The Today Show that I found very difficult to stomach and that I found to be a very poor piece of "journalism" and "reporting."  In the segment, a couple does the new MaterniT-21 Plus testing to find out if their child has one of 3 trisomy conditions (Down syndrome (Trisomy 21), Edwards syndrome (Trisomy 18) or Patau syndrome (Trisomy 13)).

During the segment the parents say that if their baby has Down syndrome they will continue the pregnancy, but that they want to know so they can be better prepared. They do not say what they will do if the baby had Trisomy 18 or 13. 

 About halfway into the segment (you can view the entire segment here) Matt Lauer says to the couple, "Let's get right to the good news." 

The mom goes on to say, "We are safe. The baby does not have Down syndrome."

I personally found the segment to be very disrespectful, misleading, and incomplete reporting. It would have been just as easy for Matt Lauer to say, "What were the results of your test?" instead of getting to the "good news." Plus, "safe" from Down syndrome? What does that even mean? I get it that they want a healthy child, but am so disappointed in the presentation of the segment.

I had no idea that my thoughts on this particular segment would raise so many views and varying opinions-- but I'm so glad it did.

Again, I personally think it is in incredibly poor taste to celebrate that your prenatal test results show that your baby does not have Down syndrome, Edwards syndrome or Patau syndrome. If you want to "celebrate" such news in private, that is an entirely different matter. 

I find it wrong for multiple reasons.  I cannot bear the disrespect some people show individuals with disabilities.  Do they think people with disabilities do not have feelings? Do they think that they cannot hear or understand what they are saying? For an excellent post on this, please go here to read about a women with Down syndrome who accidentally called into a radio show.

What about kids, teenagers and adults with Down syndrome who DO understand what Matt Lauer is saying and hear it? What about those people who hear on the morning news that a couple is celebrating that their baby does not have Down syndrome? What message does this send to them? That is where I think The Today Show really dropped the ball. I found the entire segment to be rife with errors and inaccuracies and in overall bad taste.

This all being said--- I also 100% understand that every single parent wants their children to be healthy. No parent wants their child to experience any kind of discrimination, health issue, teasing or anything painful. I agree! I understand! I do not fault these parents on The Today Show for wanting their child to be healthy at all. What I do fault is The Today Show's decision to run this segment in the way that they did.

I also don't want any parents who had a prenatal diagnosis that their child has Down syndrome to feel bad for being worried, for mourning the diagnosis and for being sad about this diagnosis.

We had a very, very early prenatal diagnosis and it almost tore our family apart. It was hard. It sucked. At times I wanted to die. I wanted to be in a car crash and not have to worry about having a baby who society would not value. I wanted to have a "normal" pregnancy and not have to worry about hearing the R-word in movies and on television. I saw other pregnant women and I envied their joy and their anticipation. I wanted to be excited to be having a baby instead of constantly worrying about what the rest of our life would look like and how Joey would fit into it.

At that time I just wanted the Down syndrome to go away.  Why did I feel this way? It was fear. It was fear that my precious baby might be teased, ridiculed and might not have a full life. It was fear that Down syndrome would be more than I could ever possibly handle. It was so much fear that it completely gripped my whole world and sent me into weekly counseling sessions during the pregnancy to try and hold it all together. It was, other than living in D.C. and being in the Navy during 9/11, one of the most trying and stressful and difficult times in my life. What makes it more difficult is the guilt I had then and the guilt I still experience that I was so afraid about this amazing little boy who I would now go to the ends of the Earth for.

It took meeting people, talking to other parents (you know who you are-- and you were all and still are all AMAZING and I still turn to you almost weekly for advice), reading other blogs, reading books like Gifts and educating myself to help me finally accept that despite all my worries, Down syndrome was not anything to be scared of and that I needed to be grateful to be having a child no matter what diagnosis he might have.

Baby Joey

I come to this from a place of initially being afraid to have a child with Down syndrome to becoming an advocate for Down syndrome. For trying to help make sure people with Down syndrome are seen as individuals who have so much to offer our world and our society. 

What our experience taught me is that if you want to become a parent you need to go into it with eyes wide open that there are NO GUARANTEES. To me that means that there are no guarantees about health, aptitude, success, failure-- anything. As one mom wrote to me- a true tragedy is losing a child. Down syndrome is not a tragedy. That is my opinion as well and it took going through my own time of grieving and learning to understand that. I feel blessed in some ways that our prenatal diagnosis gave me the chance to be angry and to grieve before Joey came into the world. I remember almost the exact moment that I no longer cared about the Down syndrome and that all I wanted was Joey to be here.  I was reading a post by a mom who's daughter, Gabby, had Down syndrome and who had a heart condition (like Joey), but who died. I read about that mom's grief and her pain and it finally clicked-- the Down syndrome just didn't matter anymore.  All that mattered was meeting Joey and holding him in my arms.

What I hope to do is to help other moms and families who may receive a prenatal diagnosis that their child has Down syndrome to see just how amazing our kids are. I also hope to keep spreading awareness and trying to encourage acceptance and respect of all individuals just as God made them. (Visit here for a wonderful organization dedicated to doing just that).

His first smile post heart surgery.

For all of these reasons, I understand parents wanting their children to be healthy. I also understand that many people would be glad to find out their baby does not have Down syndrome. But I also hope to continue to spread the word as one mom put it, "I never knew how bad I wanted a child with Down syndrome until I had one." For me, Down syndrome has given me a life I never knew I could live.  A life full of challenges-- lots of challenges, but a life that is so full, so rewarding and so incredible all because of Joey's existence. 

Baby Joey.
I have said it before and I will say it again-- Dearest Joey-- I am so sorry I ever even thought I might not want you just as God made you. I'm sorry I didn't have the faith the entire time to know that however God made you would be exactly as you should be. I am sorry I ever grieved even for a minute any single thing about you. I love you completely as you are and I am forever grateful for the opportunity to be your mom.


  1. Thanks so much for posting both this blog and your previous blog. I don't frequently watch the Today Show, but was disappointed to hear of their presentation of the prenatal testing results. Like you, I have a 2 year old son with Down Syndrome and can relate to all the feelings you expressed. My son, like yours, is such a blessing. I can't imagine him any other way than the way he is. I never thought I needed a child with DS, but God knew I did! Now that I'm pregnant with my second child, many ask us about prenatal testing and I tell them that we've made the choice not to go that route this time and then I tell them, "you know, a baby with Down Syndrome is not the worst thing that can happen to you" (with a smile, of course). :)

  2. kpittman-- thank you so much for your comments. Isn't it amazing having a child with DS? I had no idea the blessings we were in for. Thank you again for your comments and blessings to you and your children and family!

  3. yes yes YES !!!! Perfectly said !! Bravo !!!


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