Grieving Down Syndrome


I can still feel the anticipation of getting to see my baby for the first time on the ultra sound monitor. This was my third baby but the excitement wasn't any less than the first two times. It was actually a different kind of special, after have gone through 2 miscarriages prior to this pregnancy. Hearing his/her heartbeat, seeing them move around, just the confirmation I need to be able to breathe a sigh of relief that finally, we were going to have another baby. We had already gone through so much heartache and uncertainty over the last couple of years, so this was a true blessing.


I honestly don't remember a lot from the visit that day. I do remember the excitement of seeing our little one on the screen. Then I remember them taking us back to an exam room where the doctor came in to tell us they had found markers on the ultra sound that indicated a possible Down Syndrome diagnosis. We declined to have an amniocentesis done but later agreed on a new form of a test that could be done on me and not affect the baby in any way. They drew my blood and then we went home to wait.

Google is no friend

Once at home, I immediately googled every marker that they had found on our ultra sound to see if there were any other possibilities for them to be there. I googled everything down syndrome and the odds of me having a child with down syndrome. It was overwhelming and I had to eventually force myself to step away from google.

Those two weeks of waiting were the longest two weeks of my life. I think we eventually convinced ourselves that the baby was fine and would be completely "normal."


The call came in

We eventually got the call from our doctor's office but they wouldn't give us any information over the phone. Not a good sign. We made our way to our appointment, still with positive thoughts. Until that moment, one I will never forget... My husband sneaking a peek at our chart and all he read was, "Patient has not been told." His face turned pale, I saw a look in him that I had never seen before- pure fear, shock and desperation.


The doctor finally came in and took us to his office where he finally said the words we had been fearing, "Your baby has Down Syndrome." I remember nothing else after that until the car ride home where I finally let the tears flow. I was broken. "Why, why is this happening to me? I am not equipped to raise a baby like this! God, you've made a mistake! Please, God, no!"


It's hard for me to write those words. I hate that I felt that way! I hate the assumptions that I made about our beautiful baby before she was even born. Before I even knew that she would be a girl, I devalued her life and so did so many others. It still breaks my heart to remember that day and the weeks that followed. I grieved, I grieved hard, for the baby I thought that I was going to have. It's so hard to admit that, but it's true. I know it's true for so many other moms like me. I had to grieve to get to the place that I am now.


Why would I admit these feelings and share them so publicly? It's because I know there are other mothers who have felt that, so many other mothers. Even worse there are mothers who never even had the chance to see how wonderful their baby and their life could've been had they just chosen to continue their pregnancy. Way to many babies' lives have been ended before they even started due to a prenatal diagnosis of Down Syndrome. The thoughts and fears that I had were too much for too many.


But we can change that! And that's why I share this story! If I could've fast forwarded my life a few months or even years, I would've been able to see how wonderful my life was going to be. I would be able to see this beautiful girl that is changing the way other people see Down Syndrome. I could see this girl changing the hearts of so many people including mine. But I only saw the negative. I couldn't see past the challenges and judgment. This is why October and really every month is so important. This is the month that we educate, advocate and shout our children's worth. This is the time for us to show the world what people with Down Syndrome are capable of and how much value they bring to our lives. This is the time for us to change the way people see Down Syndrome!


October is Down Syndrome Awareness month and I'm asking you to help me shout our children's worth from the roof tops! Stella's life matters! She is capable! She is strong! She is exactly who she is meant to be and I wouldn't change her for the world. She was not part of my plan but she is so much better and she is turning me into the person that God intended me to be. Share our story! Follow us over on Instagram and Facebook for weekly facts, stories and myth busters on Down Syndrome and help us educate the world. When we know better, we do better!


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