Tuesday, December 22, 2009

Everything Changed...

One year ago today. This was not the day we got the official results from the amniocentesis, that was December 26th, 2008, which made for a rather depressing Christmas holiday. December 22, 2008 was the day that my doctor told me that my afp testing results came back as a 1 in 10 chance for Down syndrome and that's when I knew. This was the day that my "perfect pregnancy" came to a screeching halt.

When the genetic counselor called a few days later on December 26th, I'll never forget that moment: my cell phone rang and I had to step out into the garage because the girls were happily (although loudly) playing with their new toys. I held my breath, just praying that she would say "everything came back normal" even though in my heart I knew. But she didn't. Instead she said "I'm sorry, but the amniocentesis came back positive for Trisomy 21". I can barely type this without sobbing. I don't know why it is still so hard to think back to that moment. I think I'm sad for the girl that answered that call. But I don't feel like the same girl today.

After some very sad weeks, the saddest I have ever been, I decided to send out an email to let all of our family (that didn't know) and friends know about our son. I'm a realist. And while I was very sad, I knew I had to snap out of it and try to move on. No matter how hard I cried it still was not going to change the diagnosis so this email was my way I saying: I've accepted it.

Here's what I sent:

January 6, 2008

Happy New Year to all!! We hope everyone has had a wonderful holiday this year as we have with our girls! Can’t believe it’s January, 2009! This should be an exciting year for Mike and I as we are planning on welcoming our third child into the world, a boy, in May. Many of you are aware of the recent diagnosis we have received for this baby- Down syndrome. For some of you this may be the first time you are finding out about this. Of course this came as a shock to us and was very difficult to even comprehend. We have had some time to accept this diagnosis and truly believe God will turn this into good. Mike and I want our family and friends to be aware of this now so when our baby does arrive there are no surprises or sadness just joy that a new life has entered the world. We know that many of you may not know what to say to us or how to act around us and we want you to all know that we are coming to peace with this and do not want you to feel sorry for us or awkward around us. All we ask is for your love and support just as you would if he did not have Down syndrome. The last thing we would want is for anyone to stop calling or asking us how things are going in fear that we may break down or not want to talk about it. We want you to be interested in how the pregnancy is going and once he arrives how he is doing. We know there will be challenges but we feel God sometimes leads us down different paths in life, although some paths are not where we planned or where we want to go, we know He will not lead us down this path alone. Mike and I are prepared to love and care for this baby just as we do our girls and ask that you do the same. I strongly feel after doing some research and talking to parents that have children with Down syndrome that it is a life worth living not something to throw away. And we will do everything in our power to help this child reach his full potential in life and know that we will learn so much from it.

In February we will be seeing a pediatric cardiologist to access the baby’s heart defect that was detected on an ultrasound. Heart defects in babies with Down syndrome are very common and can almost always be corrected with surgery- some not requiring any surgery at all. Of course we are hoping and praying to hear some good news at this appointment. We will not know the severity of his condition (Down syndrome) until he grows. Just as with any child, we will not know his capabilities or when he will reach milestones, be able to talk, read or write until he develops. We do know that the more early intervention the child receives the higher the potential and success. Again we will do everything we can to help our son succeed in life. Please continue to keep us in your prayers as raising three children without disabilities would be hard enough! We will keep you posted as we find out more. 2009 is sure to be full of surprises for us and I just know in my heart we are going to be pleasantly surprised. Please stay in touch!

Mike and Adrienne

When I hit the send button I had no idea what kind of response I would get. I had no idea that I would get an overwhelming amount of love and support from so many people. Sending that email was my first step to acceptance of the diagnosis and it was also my first view of how people would accept my son. I'm so glad I sent that. And I'm so thankful for the family and friends we have. And wow, Mike and I have been pleasantly surprised, beyond belief.

You've heard the saying "If I only knew then what I know now" - for me, that saying couldn't be more true. If I only knew then what I know now, I wouldn't have wasted so many tears, I wouldn't have spent sleepless nights worrying, I wouldn't have spent days and weeks being angry, I wouldn't have spent days and weeks being jealous. Man, If I only knew then what I know now....but if I did know then what I know now I don't think I would have become the person I am today. I went through a learning process about myself and sometimes I don't think God wants us to know it all because otherwise we wouldn't have a chance to grow.

No, I'll never forget the feeling I had when I rode down the elevator to see Mike after that appointment with the doctor on December 22, 2008. Oh, it was awful. When I saw him waiting he was sitting in the car with the girls just smiling and laughing (he didn't know yet) and then he noticed me through the window, still smiling but he could see I was not. There I was feeling like the world was crashing in around me. His smile went away when he saw my face. To think back at how very sad I was and then to look at Bennett now, it almost seems foolish. But I know it wasn't and that it was a learning process.

It almost makes Bennett's existence that much sweeter.


  1. I went through the same thing. We also learned from an amnio that Rachel had Down syndrome. It was the saddest time of my life, and I remember being jealous too. I remember thinking our family would never be the same, what was this going to mean for my two older girls, etc.....Looking back, it does seem strange that I spent so much time worrying. I also remember thinking that I would never think of Rachel as perfect.....I was so wrong! Rachel is now six and I look back at that time before she was born and wish I could have known then what I know now! Life is good!!

  2. I feel like that too....I wish I would not have spent so much time worrying and crying, etc. I took it hard when I was pregnant, couldn't eat and felt sick about thinking what our future may hold....now I think it was silly but you know it is a hard diagnosis to swallow at first, but it sure has made life much more precious to us all. Have a very Merry Christmas Adrienne

  3. Wow. I'm bawling like a baby!!!!! We didn't find out until B was born, and when I sent out a similar email, I, too, was absolutely flooded with responses. Of course, with a new baby, a needy toddler, and all these emotions, it was awhile before some of those responses were even acknowledged!!
    I agree, if I only knew then what I know now...BUT I think we each have to go through that in order to reach the place where we are now. And even now, as B is almost 20 months old, I still have my moments and my days where I have to mourn what I expected. To mourn what was never to be.
    And then I get over it for awhile and emerge stronger.
    I hope you and your family have a WONDERFUL Christmas!! :)

  4. I too will never forget 4/21/09, the day we learned that Johanna had abnormalities. Like you I knew what the results of any testing would not be "normal". I think telling Chad what that first ultrasound showed was the absolute hardest thing I have ever done.

    Thanks for this post. It's wonderful.

  5. I tear up reading that letter you sent out to your family and friends. The one I sent was very similar. I remember having all those same feelings, all those same heartbreaks... But now I look at Alexis and...wow, God is good!

  6. There are so many of us who have been down that same path and I can truly relate to the "If I only knew then what I know now"...I too wouldn't have wasted all the tears, emotions, etc. Mike and you (and the rest of your family for that matter) are blessed beyond belief with Bennett. I'm so happy to have found your blog a long time ago--it helped me to get through some very difficult times when my wife and I found out. The holiday season for you guys will be so much brighter and richer this year, enjoy.

  7. Wow!! Thanks for the morning wake up cry!! You post wasn't a sad one, just something I can soooo relate too. And you are right, when you mentioned about how writing this post made you sad for the girl who felt that way back then. I am no longer sad at all that Ella has Ds but I can often remember exactly how I felt when I first found out. I remember people telling me "it will be okay" and "life will be great, just wait and see". Boy were they right. Bennett is beautiful beyond belief and I am so glad that your family has been Blessed with him. Have a wonderful Christmas!!

  8. isn't it a shame how ruined we all felt? maybe that's not exactly the right words to use, but i know you know what i mean. you look at bennett and see the beauty, just as i look at my ben and see it too. how foolish we all were/are. i still see it all around me too-people too afraid to see the beauty in life's inperfections. we are the lucky ones. truly, we are.
    merry christmas to you and your gorgeous and blessed family!

  9. I think you did an amazing job of the letter, and congratulate you on valuing Bennett so much so early on. I know the medical fraternity don't always, and they are plain wrong! Your strength is inspiring :) Bennett is so gorgeous.

    Have a very Merry Christmas with your beuatiful family.

  10. Amazing post ... I can relate so well to everything that you went through. The emotional turmoil, the anxiety and then the unexpected joy after Joel was born.

    I loved the e-mail you sent out to your friends and family. What a perfect way to tell others. One of the main reasons I am so glad we found out about Joel having Ds before he was born was that his birth was celebrated. I am so thankful for that!

    Bennett is such a blessing and I'm so glad that you are in such a different place this year. Sometimes those anniversaries can be difficult but they are important because they remind us of God's faithfulness to us even in times of trouble!

  11. all so true. That was a powerful e- mail! Beautiful job. I think ( for me it was anyway) as soon as I verbally accepted Emmie's diagnosis (out loud)things got better. Of course that took quite some time. Such a waste of time worrying. Hindsight... ya know.
    And it's snowing on your blog... so cute!

  12. Awesome post but God is sooooo Good !!!

  13. beautifully said!

  14. Adrienne, I feel like we both have such simliar stories from last year, and look at both our boys now! Isn't it just simply wonderful how things work out?
    Beautifully written, thank you for sharing...
    Merry Christmas!

  15. love, love, LOVE this post! Perfectly expressed. Did I mention that I love this post? ;-)

  16. Wow, Adrienne. Thanks for sharing. How appropriate that I would choose today to catch up on your blog. It's Micah's b-day today. I'm with you... not the same girl who got that phone call.

  17. While we don't have a definite dx I recently sent a similar email to friends and family. More than anything I wanted the birth to be joyous and not filled with people unsure how to act around us. I too was amazed by all the loving responses we got.

  18. Just recently found your blog and I can not get enough of it and Bennett and your beautiful family! This one really hit home and "the son that never existed" I thought about all weekend long. Thank you so much for your insight. Our Israel is 5 months old and we got our T21 diagnosis a week after he was born. Amazing how as humans, being so different, we can have the same feelings when we have a crisis (or what seems to be). I can't thank you enough for sharing.


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