Wednesday, January 30, 2013

"We're Safe, the Baby Does Not Have Down Syndrome" & My Break-Up With The Today Show

Ugh. I watched it. I thought about it. I watched it again. I thought about it some more. There are elements of this segment on The Today Show that I enjoyed. Then there are the ones I just can't stomach. As Joey's mom, there is a part of the segment that I just cannot watch without crying and without mourning the way our world celebrates when they find out that their child doesn't have Down syndrome. That was the part that stuck with me.

All photos in this post by Nat.

On January 28, 2013, The Today Show ran a segment about a couple who is having their first baby and opted to do the new MaterniT-21 Plus testing to find out if the baby has Down syndrome (Trisomy 21), Edwards syndrome (Trisomy 18) or Patau syndrome (Trisomy 13).  The parents to be said that even if the baby did have Down syndrome, they would keep the baby, but they wanted to do the testing so that they could be prepared and could plan and see additional specialists if needed. 

The segment talked about the mom's "advanced maternal age"-- she will be 35 when the baby is due in June and they used that as an additional reason to do the testing. 

I recently had a long talk with a friend about the MaterniT-21 Plus testing and about the prenatal testing that we chose to do with both of our children. With Tommy we did the typical ultrasound and the quad screen testing. With Joey an early ultrasound showed that he had hydrops around his body and a septated cystic hygroma around his head, which led to our doctors advising us to have a CVS done to try and find out what genetic conditions might be causing his complications.  With Joey we knew at only 13 weeks into the pregnancy that he had Down syndrome. Only at the time, the Down syndrome diagnosis was very secondary because we were being told through a large part of the pregnancy that he would never survive because of the cystic hygroma, the hydrops and then eventually his congenital heart disease and heart defect. 




For our family, prenatal testing did just those things that the couple on The Today show spoke about.  We were able to see specialists (oh- and did we ever- I had 3-5 appointments per week when I was pregnant with Joey).  He had multiple fetal echo cardiograms performed. We had multiple stress tests each week.  We had weekly ultrasounds. We were as prepared as we thought we could ever be before he was born, except we had almost zero understanding of the joy this little boy would bring when he was born. We had no idea the people he would inspire. We had no understanding of what his little life would mean and how his fighting spirit would end up defining our lives in a richer and much more meaningful way.

For us, the prenatal testing was both incredibly stressful and helpful at the same time. The stress of knowing that all of this was going on inside me to our baby was so intensely difficult because I had no control and could not do anything to help him. At the same time, it gave us a lot of time before he was born to accept that Joey had Down syndrome and that he might have some medical issues. Looking back, the greatest fears were the fear of the unknown. The fear of what it would mean to have a child with Down syndrome. The fear of what society would think of Joey. Would people think it was my fault because I was at an advanced maternal age? What would it mean? How would Joey's diagnosis affect Tommy? Our lives? 








Looking back I wish someone could have just told me how amazing it would all be. I wish they would have been able to tell me that Joey's smile would fill my heart with amazement and joy. That the sound of his laughter would cure any heartache in the world. That each of his milestones would make me far prouder than of any accomplishment I could have ever imagined. That the life God was giving us so far exceeded any child I could have ever dreamed up on my own. That is what I wish a prenatal test would have told me.






In the meantime, if we were to ever have another child we would definitely do prenatal testing again. Now that we know our children are at risk for congenital heart disease we would definitely have echo cardiograms. Now that we have a child with Down syndrome, we would test again so that once again we could be as prepared as possible. For that, we appreciate the knowledge that prenatal testing can provide. 

What I don't like and what I don't respect, however, is the name that the company, Sequenom, chose for their new testing--MaterniT21 Plus. I find it disgusting. I find it insulting. I find it completely abhorrent that this company would use this "ironic" twist in its naming of its new prenatal testing. In my mind it is completely disrespectful of parents, moms, children and individuals with Down syndrome.  As you may know, Down syndrome is the occurrence of a Trisomy (T) of the 21st chromosome (thus- T21). While the test screens for 3 different trisomies, the manufacturer chose to highlight that it tests for Down syndrome.  Why? To prey on people's fears? I don't know the "marketing" theory behind, all I know is that I find it reprehensible.

Pros and Cons of Prenatal Testing

For any woman or family considering prenatal testing there are pros and cons to both sides. Some of those include:

Pros
  • Earlier knowledge of possible problems may help parents prepare for the care the child may need.
  • Early knowledge of certain conditions may be an advantage in case emergency treatment is necessary (such as when our doctors were going to remove some of the excess fluid built up around Joey's body).
  • Early knowledge of certain conditions may give parents time to meet and find specialists (such as our cardiologist in Akron and at the University of Michigan- we knew both of them before Joey was born).
  • Early knowledge may be an advantage in that doctors may choose a delivery method that minimizes the risk to the mom and infant (Such as Joey being delivered via C-section 3 weeks early due to the excess fluid build up and the concern about his growth be restricted).
Cons
  • CVS and amniocentesis carry some risk of miscarriage (We had to travel out of town for Joey's CVS to help reduce the risk--there is a school of thought that doctors who perform a CVS more often have a lower miscarriage rate).
  • The MaterniT-21 Plus testing can confirm only 3 of the trisomies, but does not test for nearly 50% of the other chromosomal conditions.
  • Testing is not as precise as many parents believe them to be.  It does not guarantee that problems do not exist.
  • Testing may indicate a problem where none exists or may not detect a problem, giving false security.
  • Testing does not cover all disorders or diseases.  Many diseases have complex forms that cannot all be covered in a generalized test.
  • Testing raises ethical issues with some using prenatal testing as a means to decide to terminate even when there is never a 100% guarantee whether or not a child will survive a pregnancy with or without health issues.
Back to The Today Show segment and why I simply can no longer turn on my local affiliate NBC channel and ever watch it again. 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." 

This is when my heart sank. Surely, I thought to myself... surely, they are not actually going to announce on national television that their baby does not have Down syndrome? 

Let me repeat that again, Matt Lauer says to the couple, "Let's get right to the good news."

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

And then I cried. This is the very reason people fear having a child with Down syndrome. This is the very reason I feared having a son with Down syndrome. 

The "good news" of this particular segment--- which had claimed that the testing would allow the parents to prepare and line up specialists-- the "good news" was that their baby did not have Down syndrome. 

The "good news" that The Today Show celebrated on January 28, 2013 was that this couple's baby-to-be will not be like our precious son, Joey. 

For that, I'm out. Good-bye Today Show. I've been enjoying Good Morning America just fine. 

For that, I'm more dedicated to trying to help advocate and educate the world that having a child with Down syndrome is not some kind of dark cloud. 

For that, I'm hoping that someday when we turn on the television we will see a couple rejoicing the gift that God is giving them a child.  That we will see a couple or a mother rejoicing that her baby has an extra special gift-- an extra chromosome.

For now, I wonder, is it too much to ask others to not celebrate on national television that their child does not have Down syndrome? 



109 comments:

  1. I wish our world was such that when you have a baby, the doctor says "Congratulations! It's a girl. She has 47 chromosomes." in the same way that the doctor says, "Congratulations! It's a girl. She has 46 chromosomes." Why can't people see (and I didn't know this before I had my own son who was born with Ds) Why can't people see that Trisomy 21 is a variation of "normal?" The most comforting sentence in the new parent package that I received in the hospital was "Trisomy 21 is a natural genetic variation." I held onto that, and as my little guy has grown older, I've found it to be true even though I inwardly scoffed at it. At the same time I fervently hoped it was true. Wake up world!!!!

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    1. I love that K Wilde--it is a variation of "normal"! What is "normal" anyways, right? I have never heard it called a "natural genetic variation"-- what a beautiful description- so much better than a chromosomal abnormality--Thank you! I will use that description now also--it does give a parent such comfort.

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  2. Great post and really gorgeous photos. I love seeing you in the pictures. and Joey's walker looks really cool. I have a cousin who had a "Down syndrome scare." I didn't know about it until after the scare was past. But I had heard that there may be something "wrong with the baby" and that the dad was freaking out. It definitely stung, especially since the whole family is smitten with Cora.

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    1. It does sting, for some reason, doesn't it? It killed me that these people said they were "safe"-- what in the world from? Safe from Down syndrome? Seriously? I'm going over to visit Cora on your blog right now-- will brighten the day!

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    1. Thank you! I hope it helps describe why those of us who have kids with Down syndrome don't need to watch others "celebrate" that they don't have it.

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  4. The constant devaluation is exhausting. I am not often at a lack of words but at times like these....I am just tired. Tired of the words we hear day after day. Words that classify people with Ds as less than people without Ds.

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    1. I agree-- the devaluation is incredibly tiring.

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  5. I hear you. I get it. I feel your pain....and I thank you for using this platform to be a voice for moms like us.
    With love,
    Deborah

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    1. Thank you! I can't wait to see some of your charms on your blog!

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  6. I love everything about this post. As the mom of 4 kids, 2 with Down Syndrome, you captured my heart so perfectly. Sharing with others and becoming a follower. You have a beautiful family.

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    1. Thank you Hollis family! Your family is beautiful also!

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  7. Thank you for speaking up for all the families with children who have Down syndrome.I have adopted two children with Down syndrome!I chose them because of this!They are perfect in my eyes!!

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    1. Thank you for reading and blessings to your family!

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  8. Thank you! When I was 12 weeks pregnant with my daughter, I 'knew' (mothers intuition?) that she had DS. Because I have a background in special Ed, I wasn't 'worried'' about what it would be like, but my husband was terrified! I made sure to tell my doc when he got the results of the amnio, he was to start the conversation with 'Congratulations! You're having a ___________....and she/he has DS.' Always put the child first! :) I really loved this blog-- I hope many people see it and realize what a blessing EVERY child is!

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    1. That is the best way to say it! I'm going to pass along to my doctor as well! Thank you for reading and sharing!

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  9. Thank you for bringing attention to this matter. My son, Cameron, has an extra chromosome...so what! He has changed our lives FOR THE BETTER. I wouldn't change anything thing about HIM but I would love to change how society feels.

    I love your blog and look forward to reading more of your family's wonderful journey.

    The Today Show...2 thumbs down!!!

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    1. Exactly, Nancy! It's not our children that people need to be "saved" from--society needs to learn to be more accepting!

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  10. Excellent post, thank you. I am an advocate for trisomy 13 and 18 and I think these conditions are a bit of a canary in the mine for other genetic conditions. Studies show that the most significant factor related to longevity for trisomy 13 and 18, after allowing for serious life-threatening anomalies, is whether there was a prenatal diagnosis or not. The difference, it seems, relates mostly to the attitudes of the staff. Parents with a prenatal dx are far more likely to "feel judged" than those who received a dx after birth.
    I met a physician who specializes in developing priority-setting (rationing) strategies for pediatrics. She had no idea of my interests and so she spoke openly- perhaps believing that I had the same values as the majority. She told me that one input into the strategies was values- values of the majority of the public. She discussed the cost advantages of prenatal dx and termination over survival and added, "infants with Down syndrome get the gold treatment.... for now." In shock, I shared this with many MD-ethicists I know and they told me that this thinking was not new to them.(I am from a country with public health care)
    I understand that new non-invasive testing can be done at any stage of the pregnancy. If parents are of the mind that they just want information to help prepare, why do the test at 10 weeks? What is the value of that? Second semester ultrasound will detect 70% of babies with Down syndrome and if parent really want, they can do the testing after that. I understand that "preparing" is important when baby will need specialized care but those conditions that would require this care would likely be detected in an ultrasound. As for preparing to have a disabled child- well every child carries that chance. There might be a birth injury or a condition, like autism, that develops later. If people only want and are able to love a child "they" deem to be perfect, maybe parenting is not for them.

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    1. Thank you and thank you for the excellent information about Trisomy 13 and 18! That is devastating that the prenatal diagnosis has such an impact on longevity for Trisomy 13 and 18--we were told that if Joey had Trisomy 13 or 18 (before his DS diagnosis) that both were "incompatible" with life, which is completely incorrect! What is interesting about this MaterniT-21 is that they claim it is so great because it's less invasive, but if it comes back positive for any of the trisomies, they then recommend an amnio or a CVS. I also want to know why a simple blood test costs as much as more complex procedure-- an amnio. Thank you again for your comments.

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  11. I am right there with you all. We have two beautiful daughters with DS, Bethany age 23 and Hannah, almost 15, and I get SO TIRED of people treating them as if they are not there, that what they are saying has no merit, and that they are just a burden to us. Never, never, never! They are the biggest joys of our lives!

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    1. Hi Bethany and Hannah's mom! Thank you for reading and for your comment-- I can't imagine how much fun they must be!!!

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  12. I hear your pain and I'm sorry for the pain that this segment and other people cause you when you hear stories like this.

    Unfortunately, without people like you reaching out and making the effort to educate others, those who are not in love with a child with DS or any other "abnormality" (please know that I don't mean that in the harsh way it sounds...just using it so that an "uninformed" person understands)will never "get it". The uninformed can't change their thinking until there are stories that present the other side. Stories that present the other side will not be shown until multitudes of people push the media to present them. Until then, those people who have never been involved with people who do not fit society's picture of "normal" will continue to believe they should fear these issues.

    (By the way, I'm posting as "anonymous" only because I don't want to open up any of the accounts necessary to post with a name. I am not trying to hide who I am. I live in Tampa, FL and have a cousin with DS)

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    1. Thank you for stopping by and for your comment! :-) You are right-- the uninformed will continue to be ignorant!

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  13. Perfect post--I agree--celebrity and the media have no advocacy for our precious children--can you name more than four people in the media or celebrity that have been affected by Down Syndrome--no I have researched this tirelessly--it is so overlooked--and I am with you on being an advocate for Down Syndrome! A few of us here in Alabama are in the process of beginning a World Down Syndrome day celebration --I will share the facebook page with you all--we are collecting LOTS of Socks--setting them up in groups of 21 and having the 21st have an extra three--then donating the socks to an orphanage who caters to adoption of special needs children--thanks for sharing what I think about all the time! I am turning off the Today show right now!

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    1. That is awesome!!! The biggest celebrity that I know who advocates is Jamie Foxx-- his sister has DS and he is the only one I know of. Can't wait to celebrate World Down Syndrome Day-- sounds like you have a wonderful plan, Tracy! Thank you for your comment and for reading the post.

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  14. I too had an amnio with my son. We were so glad. We got over the shock of the news. We became prepared, since he had to have surgery for duodenal atresia right after birth. And we were so happy when he was born. I too wish I had known what a joy my son is, and how he teaches me far more than I could ever teach him. He is a wonderful 21-month old little boy and is a joy to all who know him.

    And I wholeheartedly agree. Shame on the Today Show. Down Syndrome is NOT a bad thing. Don't characterize it as such. Also, please never ever call a child who happens to have Down Syndrome a "Down's Baby". Ugh. Just Ugh.

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    1. Hi Amy! Your son sounds amazing! I agree- I hate hearing the phrase a "Down's baby"-yuck! Thank you for your comment!

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  15. What a beautiful story you have written and love the pictures. Thank you for sharing your story and enjoy every minute with your babies. They are going to grow so quickly.

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    1. Thank you for reading the post and commenting! They ARE growing so quickly! It's going too fast! :-)

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  16. Thanks for this great post. I can't tell you how similar your journey with Joey is to our journey with our Hope (yep T21)! Cystic hygroma, stress tests, heart defect, myriads of appointments, worries about affect on older sister....the works! In fact, our kids look about the same age! Hope wasn't supposed to survive pregnancy either, but God sure did know better! We call her our miracle baby - for good reason. It was so encouraging to me to read your blog - wish we could get to know you guys in person. :)

    Your take on the prenatal testing is "spot on". I'm so thankful I did it, but worry about the impact this new test will have on the DS community. People just can't know ahead of time what a special needs child will bring - yes challenges, but so so so much blessing & joy.


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    1. Hi Lisa! That is wild that Hope and Joey have such a similar story! It sounds like she is doing well- I wish we could get her and Joey together to play! Thank you so much for stopping by and reading and commenting- feel like I know you! :-)

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  17. I like your blog and can see where you are coming from, but I am not sure that the comment bugs me as much as it bugs you. My son (T21) is my world - he is amazing and has taught me more in 2 years than I had learned in my previous 34 year son the planet. That said, I wish he did not have to struggle with the medical complications and societal discrimination that comes along with DS. I see how hard he has to work to achieve things other kids do without thinking - and he is amazing and it makes milestones so much sweeter because we earned them with tons of sweat. And I am convinced he is going to change the world, but it is still harder path. He has already had several major surgeries with more on the horizon. I wish he didn't have to go through that.

    So I don't think it is fair to fault new parents for wanting a "healthy" baby - medical complications are scary and can be life threatening. No parents wants that for their child. There are a lot of scary complications that babies with DS are at a higher risk for - the scariest being heart problems and leukemia. And you know the list goes on from there.

    And I can look at it from a different perspective, someone might say, well at least Down Syndrome was mentioned. Other conditions are part of that test are not even on anyone's radar - and so people aren't even trying to understand those kids and what they can achieve and what they need to thrive. That there's no money for research because it's all going to DS, since it's such a high profile condition.

    At the same time, I also get where you are coming from. I agree that they didn't have to single out Down Syndrome. I get defensive sometimes about DS - I want to ask my brother and sister-in-law if they are getting that test done, but I get all bristly thinking about it at the same time. It's a sore subject because I feel that the test is a complete judgement on my son, who is more amazing than I can even describe.

    But if I get pregnant again, I will hope for zero medical complications, regardless of if it is chromosomally-based or not, because I know first hand how much harder it makes life. Not less happy, not less fulfilling, not less deserving and worthwhile, but just harder. So, for me, I really can't get mad at young parents for not wanting their child to have to struggle with some potentially very serious medical conditions.

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    1. Love your comment Kris and wholeheartedly agree.
      Mother of a two year old with DS.

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    2. Thanks for commenting, Kris! I'm not only offending for my child, but I'm also offended for the teens and adults with Down syndrome who may have seen this segment. I found it very insensitive to those individuals who have DS and are of an age that they might be watching the show. I agree- every parent wants a "healthy" child, but maintain that there are no guarantees and I really hope people can continue to grow and accept individuals with DS as being completely perfect just as they are. I appreciate your viewpoint, though-- it is always good to look at things from different views.

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  18. Thank you for sharing your story. I to have a child with down's. He is the light of my world. I would change nothing about him. There is nothing that compares to that little boy giving me a hug and saying "mommy you my girlfriend forever" He is eight years old and does not have a problem saying he loves his mommy. I am proud of my little man and dare anyone to say that he is not "normal". He breathes talks and eats,loves,plays and cries just like every other child in this world. Having my son has brought so much into my life that its amazing. His older brothers and sisters adore him and he wants for nothing because if mom says no you can bet one of his brothers or sisters is getting it for him. Anyone who meets him falls instantly in love. I am so thankful that God chose me to be his mother.

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    1. Debbie- your son sounds amazing! Thank you for reading the post and for your comments! :-)

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  19. Not "this couple's 'baby-to-be'," If she's pregnant, she's carrying a BABY, not a 'baby-to-be'.

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    1. You are absolutely right-- it is a baby! Good point!

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  20. Jenny, Your experience was very similar to mine 14 years ago. When my daughter was an infant, the Today Show had a segment with a gynecologist on "who should have an amnio." With trepidation, I watched that segment and cried when the guest said something like, "...and then she can decide whether to keep the pregnancy or not." Here I was with this sweet baby girl and wondering, "WHY wouldn't anyone want her?" I wrote a letter to the gynecologist and copied Katie Couric about my daughter and how they could have presented the topic differently. I never heard from either of them. And I never watched the show again, which was a bummer because I really liked Katie and Matt at that time. That was my first activist endeavor, and I've been on a roll ever since! Thanks for a great post.
    http://www.keepinfantswithdownsyndrome.blogspot.com/

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    1. Thank you, Eileen!! I enjoyed your take on the show and on the earlier show on the The National Right to Life News Today and the KIDS website is AWESOME! Thank you for your advocacy for all of our kids and for individuals with DS! Sadie is a beautiful young lady.

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  21. Jennifer, I LOVE this post! I think you touched on everything beautifully. The last line definitely sums it up. Why don't they have people on TV who actually have a child with Down syndrome say if the news is good or bad? Probably because a parent to a child with Down syndrome would almost always say that having a child with Down syndrome is wonderful news! I saw your link to this post on the IDSC page, and I was like wait I know her! We met a few weeks ago in Cuyahoga Falls at Panera. My little girl is Kayla :). Look forward to seeing you again soon!

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    1. Hi Amber!!! How is Kayla doing? It was so wonderful to meet you guys! Thank you so much for reading the post and hopefully we will see you soon!!

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  22. Loved this article! Great job!! I never did watch the Today Show and now will never tune in to Matt Lauer or the show. My oldest (13) has Down syndrome and I love him like no one will ever understand.

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  23. I read this and cried. I too have a son that has Down Syndrome and I am so blessed! I feel like I won the lottery because not many people will have the joy that I have. The Love is unimagineable! My life is so much better since I had him! I am proud to say that I have him. So many people have no clue as to what they are missing out on and so many people have taken away (abortion) the best gift they could have ever had.

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    1. Hi Sally! Isn't it an amazing journey? Thank you so much for your comments!

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  24. Great post. My son has Down Syndrome and he is one of the greatest gifts we have ever received. I feel sorry for Matt Lauer becaus he does not understand unconditional love. He should meet our wonderful children and use his job to educate the world.

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  25. Great post. The best part of it all is that you have the most beautiful son and he looks so happy. You are the one who is blessed. My Granddaughter has CP and can't walk or talk and she too is most precious child on the planet. So it looks like us people with special need children have the best children in the world. So Today Show....you know what you can do.

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    1. Thank you for your sweet comment-- we feel so blessed by Joey :-) Your Granddaughter sounds like an amazing girl!

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  26. I am happy to see that you and your partner chose to accept the life you created!! I can not express the pride I have for my son. Let me share this with you...I wrote it on jan 17th - Brandon's birthday - as you will see, your son will give you more direction in life than you will give him - Thanks for your article. Today, My son Brandon Zick is 24 years old. When I stop to think about how much my life has changed and how my direction in life has been refocused I am overcome with emotions & desires. Today I see a young man whom I was told would never develop into a person with a meaningful life. I never believed the professionals who were telling me this. I always knew that every life is precious and every person needs nothing more than a chance to develop to their full potential. You see, Brandon "shines"...He lights up life for all who meet & greet him. His positive attitude and willingness to try new things grows daily. I have learned a great deal over these years. I now truly understand empathy, compassion, morals, values & ethics. Brandon has shown me the meaning of virtue. Brandon has shown me that we CAN change...we CAN help...we CAN overcome impossible odds! There is NOTHING that cannot be achieved if you BELIEVE!! I wish more people could meet Brandon in order to see what is possible! He might not be able to read much and he can only write a little but be can teach others SO MUCH about love - life - and how to truly become a happy person. He can change the mood in a room just by entering - his smile is eternal & his positive attitude is alluring. He does not follow a designed path and he no longer allows others to show him the way - He knows the way - he knows what path he want to follow - it is his own path...he created it and he has even shown others through his spirit that everyone has a path to create - not to follow. I thank God, my wife Michelle, my son Jeremiah and all of those who have helped me to better understand the true meaning of life - to love one another and to help whomever, wherever I can - Thanks Brandon!!!!! Happy Birthday!!!!!!!

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    1. Thank you Ernie and happy belated birthday, Brandon! Isn't it incredible what our children teach us? I love what you wrote!

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  27. Hello! Just wanted to share that I read your blog, and watched the link to the video clip, we have a beautiful son who happens to have down syndrome as well, and I also will no longer be promoting the show by watching it! Thank you for spreading the word through your posting, I hadn't seen it until now. What a shameful segment! We couldn't be more proud of our son, he has brought us such joy and a much greater appreciation for ALL life! I just think so many people lack awareness and just assume based on ignorance and I guess those of us who are blessed by the lives of our children with DS have a greater responsibility to educate those who don't have a clue! Did you happen to write the Today show to express your disappointment? I did and I doubt they will give it a second thought, but it's worth a try! At the bottom of their website they have a contact button which allows you to comment or ask a question. Just a thought! Anyway, thanks for your posting, and God bless!

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    1. Hi! I did write-- am hoping to hear back. Thank you so much for your comments!

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  28. Ok. I guess I will make the one dissenting comment here, but I am genuinely interested in your point of view.

    If DS is so good, then why don't we advocate for research and treatments to cause DS?

    I think it is wonderful that you have reached a place where you can take the specialness of your child and see only good in it. I, too, have offspring who are special: one who has autism and another who has a mental illness. Perhaps, I am a "the glass is half empty" kind of person, but I ache for them both for their struggles.

    Then, too, my experience is probably profoundly different from yours; your child is still very young, and one of mine is now adult; your child wears his "specialness" on his face and mine are often misunderstood. You are probably seen as a hero for your child; I am sometimes accused of being the cause of children's problems (by the misinformed).

    So tell me the answer to my first question, and is DS the only diagnosis that is "good news" and everything else is bad?

    Please don't consider this criticism but perhaps fodder for another blog post.

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    1. Thanks for your comments-I'm not sure what you mean by Joey wearing his "specialness" on his face. I don't think DS is the only "good news"-- I just believe that we need to make a place in the world for all disabilities and I find it very distasteful to celebrate that a child is "safe" from having what my son has. I empathize with you and understand what it is like to ache when your children have struggles--it is one of the hardest things about being a parent.

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  29. I know it felt like the end of the world when you first hear "Down syndrome", but as all the other mothers in my situation can attest, Down syndrome is NOT the end of the world. There is far worse things that you can hear and that can happen to your child. THAT is why it hurts when others "celebrate" a little too happily when their child doesn't have DS.

    A child passing away, a child having a terminal illness are all worse news than DS. Having a child grow up to be someone that is cruel and uncompassionate - that is worse than having a child with DS. Finding out that your child hurts others, bullies, or gets in trouble with the law - there is no prenatal test for that, but those are far worse outcomes in my mind.

    We all understand that having as few issues in your pregnancy as possible is good news. But acting as if DS is "bad" news was the wrong way to go about this Today Show. I wish they would have also profiled a family with a child with DS getting the test for another child - then at least that family would bring the perspective that it isn't the end of the world and is actually the opening of a whole other fantastic one.

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    1. Katy-- your comments really hit home. You nailed it-- a child passing away or having a terminal illness is a true tragedy! I agree- I wish they had at least showed both sides. Thank you so much for your comments!

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  30. This is how we make genocide acceptable. Is it worth 8% of couples to be prepared if 92% of the other pregnancies are "interrupted"? Protest the legality of prenatal testing that target specific gene markers.

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    1. Michele-- thank you so much for your comments and thoughts! I enjoyed reading them so much!

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  31. To.the person who is begging the question: because DS the #1 congenital cognitive disabilitythat occurs in the human race. It is also very easy to detect. All disabilities equal higher than average costs for insurance companies. in a Capitalistic society, disabled citizens are liabilities. Insurance companies have lobbied to legalize the elimination of those genes (genocide), therefore eliminating costs. Propaganda such as the Today Show smile and make light to keep the facts shrouded that very few women who use these tests use them for any reason other than elimination of a gene set. As more gene sets can be reliably marked, if they too are liabilities, they will also fall prey to such practice. So, don't take it personally, autism and mental illness are not yet testable.

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    1. Natural law does not prevail from genocide. Human beings are equal not capital for some.

      I would like to see some data on the claim about costs as it does not seem reasonable given the historical costs associated with treating common and preventable social diseases in the general population.

      Personally, there is a lesson in the feature film Gattica. Not quite the distopian view expressed in the genocide sentimentality so it may disappoint some a bit.

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  32. ds kids are the happiest kids i know and are the most loving ,yes they have challenges to overcome but dont we all

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    1. You're right! We all do have challenges to overcome!! Great point.

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  33. Thank you for speaking about DS in such a positive manner! My daughter is almost 19 years old and has always been the light of my life. Her father however, couldn't handle a "less than perfect child" (his words) We found out when I was 8 months along! He stated "Well, there's none of that in my family." I said well, until now there was none in my family either but we have been blessed! There is never a day that she doesn't do something to make me proud and even if I'm sad she can always make me smile. The only thing about DS that ever frightened me was the possible medical issues and she didn't even have a murmurer! Thanks again, Tami; proud mom of Jasmine (the self proclaimed princess!)

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    1. Thanks for your comments, Tami-- Jasmine is a lucky girl to have such a great mom! I agree- the medical issues are what is scary. Thank you again for your comments! :-)

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  34. Thank you for sharing your thoughts and insight.

    I have learned that the incidence of Down Syndrome may be linked to factors other than maternal age which do not include race, ethnicity, or social-economic status. To me, that's the good news.

    I also like that prenatal testing risks associated with the prior invasive technology seem to have been addressed. Since reliable information is power, prenatal testing holds the potential to empower parents. When it is supported by the wealth of information we have about congenital issues like Trisomy, parents are able to plan for the childs needs. There seems to be some safety and security in that.....A what to expect when your expecting results from your prenatal testing kinda thing.

    I share the grief over marketing efforts with genetic prenatal testing. Just the other day I noticed an advertisement for a testing lab on the back of a bus that read "Who's your daddy". My reaction was similar and after giving it some thought I realized that I'm not able to support capitalization of any branding especially when it does not build a positive respectful image or as the case is here....leaves a core issue intentionally dangling.

    It's great to live in a country where television shows that cut their teeth on the trust of low-tech american consumerism can work to promote safety with changes in our technological means. There is tremendous amount of comfort and ease in safety. It's a basic need for any child (provided by the parents) and in relationship to the child, one for expecting parents too.

    We are working to have children feel safe too!

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  35. I wrote a letter to the Today Show and included a link to this post. I hope they read it. They have some pissed off moms and aunts on their hands. My niece has Downs and yes, we were all a little nervous when we heard the news before she was born, but now that she's here, we wouldn't change a thing. She is perfect. Thanks for putting it into words so very well.

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    1. Shane and Katie- thank you for writing a letter! I hope they get the point that they could have done a much better job of presenting this.

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  36. My three year old son has Down Syndrome. Before I gave birth to our son I worked as a social worker for over ten years. I was a case manager for Adults with Mental Health/Intellectual & Developmental Disabilities. I had the great privilege of knowing and working with many adults with Down Syndrome. When my son was diagnosed with Down Syndrome I knew from my work experience that my son would lead a verfull, happy, satisfying life. All of the people I worked with had jobs, friends, hobbies, played sports, loved to dance, had relationsips, went to church and participated in their community groups. No test can predict how happy someones life will be. Every life is precious and everyone deserves a beautiful life.

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    1. Kimmy-- thank you for your comments! I love hearing about older people with DS-- I can't wait to see all the things he gets to enjoy. You are so right-- every life is precious!

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  37. Your sons are beautiful! Thank you for sharing and expressing so well how every child is a gift and treasure from God! My nephew had Trisomy 18. We enjoyed having him in our family for 8 months and held his body upon birth but in that short time he had a great impact on us.

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    1. Thank you so much! I imagine your nephew made a major impact on many lives in those 8 months-- God bless him. Thank you again for your comments!

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  38. I must first admit I didn't read your whole story as my story was pretty much the same. Prenatal nightmare of testing, looking. poking, etc. But when our little George was pulled out of me I exclaimed "I'm in love!" and I realized that my 27 weeks of cursing God were not held against me, they were blessings to me in all that George had to offer us. People with Down Syndrome are what the rest of us are supposed to be- LOVING AND FUNNY. Give someone a hug at the grocery store and see how happy you both feel. George does it all the time and everyone leaves happy. :) God bless you all!!

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    1. Thank you, Jules! George sounds awesome!

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  39. My in-laws would be appalled at this comment, but having had contact with Down syndrome children already, i felt it would be a blessing to have a down syndrome child! They are SO precious! The idea of not keeping a child because of a variation is ridiculous!

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    1. Thank you for your comment! I agree- a variation is not a reason to not keep a child in my opinion.

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    2. Anonymous I'm with you on that. In fact people adopt these precious kids all of the time! I'm in the position of adopting a child with Ds, and having other special needs kids as well.

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  40. I'm not responding as a mom of a DS child. I stand alongside of you in all you have written, and appreciated your beautiful family photos.
    I am responding as someone who for other reasons turned off NBC and it's affiliates about 20 years ago.
    What took you so long?
    They were offensive on so many fronts then, and it appears they have not acquired an ounce of human graciousness in the meantime.
    I encourage you to stand with the courage of your convictions, I haven't NBC them at all.

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    1. Thank you for your comments!! I agree- what took me so long???

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  41. What a beautiful story and family. I am not sure why you would be so upset that parents are happy their child does not have a genetic variation. I love my son so much but if he was born "normal" life would not be so complicated for him. I would never trade him for any other but you can't tell me that you don't wish your child wasn't healthy and didn't have to go to the doctor all the time. We can't get offended everytime someone opens their mouth.

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    1. With respect, I can tell you that there is a difference between wishing a child healthy and parenting actions intended to keep him healthy, many of which do not involve taking him to a doctor. Many of which involve stepping outside a comfortable place.

      I viewed the segment and am not easily offended by these sorts of schemes. However, the segment was intentionally staged to be a commercial instead of a presentation of balanced information. Expecting parents would do well to have information unbiased by commercial interests. A difficult proposition with the mentality in producing a segment for a television show purportedly out to serve the general public.

      With respect, we ought to be offended by this sort of production and I am standing with and for the family and writer of this blog.

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    2. Thank you! I'm not just offended for me and for my child, but it upsets me to think of the teenagers and adults who have DS and who also saw this segment- we can't forget that they have feelings and they understand what is being said about babies and people like them. That part really breaks my heart- I agree-- every parent wants a healthy child, but there are no guarantees and just because a child doesn't have a genetic variation does not mean that they won't have other things arise in their life.

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  42. I understand that everyone has quirks that get them fired up about certain topics but I don't understand how you could ever think someone would not be happy to get the news that their child does not have DS. Who wouldn't be happy to learn that their baby is going to live a life that is free of increased risk for the whole range of medical issues that come with DS and the medical and struggles that will result? Who wouldn't want their child to have a normal life expectancy and the chance for that child to make you a grandparent someday? Don't diss anyone for breathing a sigh of relief at negative test results. Frankly, it's insulting. As for being offended at the name of the Maternit21 test, why wouldn't they name it that? The test checks for three trisomies 21, 18 and 13. The most common by far is 21. Why name it anything different?

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    1. A intimate sigh of relief after choosing and waiting for a test result is different than a public exclamation of being safe. If it's for the child, I'm fine with it. Indeed it could have been, but it did not seem so to me.

      The amnio test with our second child reportedly contained elevated levels of the AFP indicating a high risk for either clef palatte or spinibifida. We paid for a special ultrasound to know. We did breath an intimate sigh of relief when the physician who performed the special ultrasound did not see anything abnormal.

      Our third child born has Down Syndrome. There is no test result that would change him and it is difficult to imagine breathing a sigh of relief for anything other than that which comes from knowing how the world has become more accepting since JL Down first described the syndrome a couple of generations past. For example, life expectancy is increasing and approaching typical averages.

      I can think of at least three reasons why the name of the test is less than clever and arguable ignorant and superfluous.

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  43. I have a beautiful 12 year old daughter with Ds. We did not have any risk factors and did not have a prental diagnosis. Were we shocked -yes, did we grieve - yes, but would have a prental diagnosis made a difference - no. She is exactly as she is meant to be and I love her to pieces. My "divorce" from the Today Show is final Monday morning.

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    1. Thank you for sharing your experience! Isn't it amazing how each child is made exactly as they are supposed to be? I so appreciate your comment.

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  44. Great post thank you for sharing. Our Angel doesn't have Downs Syndrome but rather Sturge-weber Syndrome. I would not have the screening when we were pregnant with Jeremy & I would do it the same way all over again.
    I enjoyed my pregnancy & when we realized at his birth that we would have a new "normal" that was fine with me. I've grown abundantly in patience and we have all kinds of daily struggles & accomplishments as well. But I could never imagine thinking it was a bad thing to have a child with special needs no matter when you find out prenatal or at birth. Children are a gift from God no matter what your normal may be. Thanks for sharing.

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    1. Thank you for your comments and for sharing with us about your Angel, Jeremy. I completely agree with you-- I have grown so much more patience and I've become a better person because of Joey. Thank you again!

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  45. I am an Autistic adult and I have to tell you that in our community, we (Autistic people) face very similar struggles. The media is always reporting on how difficult it is to raise us, on how our parents are "heroes" for simply being parents, and when a parent murders one of us, everyone is all apologetic and sympathetic about how "hard" the parent must have has it. I know people with Autistic children who have to shield them from the media so they don't hear anything bad about themselves.
    Unlike down syndrome though, which has a known cause and is pretty much known to be lifelong and unchangeable, people are still trying to change Autistic people into something we're not. Our own parents give us quack treatments that are medically harmful, and focus more on trying to "cure" us or change our behavior to something more "normal" than on accepting and supporting us as we are. I think autism parents could learn a lot from down syndrome parents. However, I also think that the disability community as a whole, including both self advocates and parents, needs to keep up the hard work of changing public perception.

    We need to train doctors to not deliver diagnoses as if they are a death sentence, but rather as just facts. Parents whose toddlers are diagnosed with autism are given the same old devastation (he'll never do this, never do that) that parents of infants with down syndrome are. And when parents are at their most vulnerable and have no other information, the tone of that first conversation might really have an impact on them. No, we don't want to sugarcoat. But the doom and gloom has to stop.

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    1. Thank you for sharing your perspective on this

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    2. Thank you so, so much for sharing your experiences and your perspective. Reading your comments and your experiences was so enlightening and meaningful-- we will keep fighting the good fight-- thank you again!

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    3. I AM an autism parent. That is I have a child with autism. I'm sorry you've had such a negative experience. Please do not lump all of us Autism parents into one category. Parenting my son, when he was younger WAS extremely hard. I think I need to write a blog post to address this. Respectfully yours. Been there, done that.

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    4. Melissa-- thank you so much for your comment-- you are so right-- we cannot generalize and put everyone into one category. Every parent and every child has their own journey and their own experience-- thank you for sharing with us your experience. If you do write a post- I hope you will share the link. Would love to read about your experiences. Thank you again- Jen

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  46. Well said. My grandson has Down Syndrome and he is a delight. Good bye Today show...

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  47. My great granddaughter has Down Syndrome. She has Trisomy 21. She was born with heart problems and a myriad of other health problems. She had open heart surgery at 3 months of age, and 10 pounds. Her Mother, my Granddaughter, was only 23 and in the service. Since she was so young there was no object in her having the pre natal testing.This tiny child, who is now 3 years old has opened MY eyes to other children who face the same problems. I knew nothing about DS until she was born. I thank God that she was "given" to us. She has enriched our lives beyond measure. She is the cutest, funniest, happiest little child I have ever known. She is a joy to all who meet her. My granddaughter gave birth to her second girl the latter part of last year. When asked if she would have the pre natal testing, she replied,"Why? If God wants to bless us with another child with DS, we will just consider it his gift, to us." The baby did not have DS but would have been just as loved if she had. Signed by a proud Great Grandmother.

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  48. Thank you for your beautiful post. Last year I gave birth to my last baby prematurely. After 7 weeks, we found out that he had infection of the blood. He was in the ICU for 5 days and we watched how his little body deteriorated because of his infection until the infection reached his brain and he was no longer responsive. He was still breathing and his heart was still beating. I asked the doctors, will he get out of that stage ever? They say he might but that if he does, my baby will never be the same again. And what kind of quality of life is that for him when he is no longer normal, they say? Gosh, the pain that statement caused me. In effect, what i understood them to be saying is that it's better if he dies, because if he lives, he will not be normal. How could that be any comfort to a mother's heart? My son did die after 5 days, but never once did I think to myself that it's better that he died or it would have been a hard life for him. For me and my family, if he had lived, even with a brain defect, he is still and always will be a joy to our family. Thanks for your post, it's really the first time that I'm able to express this pain in my heart into writing.

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  49. Here is a blog I follow where the mom is talking about this very subject. The mom has just been given the 'good news' that the child she is pregnant with, does not have Ds. However her gorgeous three year old, Lily, DOES have Ds. Acknowledging the one means dis acknowledging the other? Not necessarily.Thanks for your insightful post. http://babynumber10.blogspot.com/

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    1. I read this one as well! I love her blog and I love reading about their family-- thank you for sharing!

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  50. I found your blog through the commentary in the Moritz Sidebar, and I am so glad to have found you. Both of your children are beautiful, thank you for sharing them in this blog. I do not yet have any of my own children, but when the time comes, I hope I can raise them in a world that is kind, loving, and accepting. One that is not celebrating that sort of "good news." Your post is spot on.

    I have watched the Today Show on a daily basis for years, even though I have had a problem with their style for a long time. Habit, I guess, watching it each day. I missed the DS story. Thank you for your post, helping me catch what I missed, and helping me cut all ties with Today. This was the last straw. GMA starts tomorrow in my house!

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    1. Hi Jessica! Thank you so much for reading and for your comments and support! I'm with you- I had been watching The Today Show for years and found some of the anchors to be very aggressive in their style of interviewing. I hope you enjoy GMA! Not many serious segments, but very entertaining! I have to turn to CNN or HLN to get real news these days. Thank you again! Jen

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  51. No it is NOT too much to ask. I agree with Anon the test is ignorant and unneeded. If you arent prepared to make the extra effort required, dont become a parent. It really is easy as that. For me, the cons far outweigh the pros. I agree with you, that is not good news at all. I am completely tired of the idea that children with Downs are considered 'less' than non Downs children. That is a completely crazy and idiotic idea.

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  52. Thank you for this post! It's beautifully written. I have 3 children (daughter, almost 6, son, 4, daughter, 2) and I am 18 weeks pregnant with baby #4 due in June. I am 35 now and had prenatal testing done. I've received "low risk" on testing but had an elevated nuchal at 12 weeks during the NT ultrasound. Fluid was seen around our baby's heart on 12/26 and then last week it was gone during the fetal echo. All that to say, I have been told I have a 1 in 55 chance of having a baby with T21 based on my age and the elevated nuchal. So although the blood tests so far show "normal" or "low risk" results, I have chosen in my mind to prepare that this baby could have DS. I hear of people saying our baby will be perfectly healthy and I know they mean a baby without DS. But I don't see it as having a baby that is not perfectly healthy. I know I can have a baby that is perfectly healthy and also have an extra chromosome. I am choosing to see the two as one. I'm not sure if I am making sense! :-) Anyway, thank you again for this post!!

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  53. Just found this post. I am so touched, love your beautiful little boys. Little Joey's sweet little hands in the last picture brought tears to my eyes. Thank you for loving him and knowing what a treasure and blessing he is!

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