I am a very proud friend of precious ones living the beauty of Down syndrome!
People would judge me for having friends with Down syndrome, but they don’t know what they are missing!
They used to call them names and described them in a wrong way but I always used to tell them “ You are worthy of greatness, never let anyone tell you differently “ !
Right after the birth of my first precious granddaughter was born-the doctor recommended my daughter see a geneticist as the area above nose between her eyebrows was flat. As she grows so do my thoughts that she has Down syndrome-but when my daughter asked her paediatrician - response was she doesn’t need one. Physically I see many features of Down syndrome but don’t want to alarm my daughter
I know a diagnosis will not change the love we have for her and the incredible joy she brings us. But I think early diagnosis will lead to early intervention.
We are adding our voice to a matter that is being discussed with great emotion in the Down syndrome community. We have been very fortunate in being able to share our daughter’s prenatal Down syndrome diagnosis story on some amazing platforms. But recently it felt like some of our hard work was undone when the Today Show, with a much larger platform, broadcast a story about Olympic gymnast Shawn Johnson and her “pregnancy scare” that occurred when they thought her baby might have Down syndrome.
Natalie Morales narrated the Today Show segment saying: “Then came the news they had been praying for. The tests were negative for Down syndrome”. Shawn and her husband posted, very beautifully and heartfelt, that they would have loved their baby (Down syndrome and all) but that they just wanted it to be “healthy”.
But this is the problem. The Today Show had an opportunity to correct misperceptions. To tell the world that a baby with Down syndrome can be as healthy as a baby without it, but that no baby is ever truly safe from health risks. To encourage people to remember that while a Down syndrome diagnosis is scary and emotional, that a baby with Down syndrome is still a wonderful, beautiful, human baby. Instead they used language such as “risk, scary, healthy, relief” and “uplifting update AFTER pregnancy complications”.
Any parent working through a diagnosis would see the message being reinforced that a diagnosis of Down syndrome is scary and undesirable. These messages are exactly what made our experience finding out our daughter Gwendolyn’s diagnosis last year when I was 11 weeks pregnant so completely and unnecessarily devastating.
Can you imagine the Today Show celebrating a baby for being “healthy” in relation to sexual orientation, skin color, gender, or ethnicity? When are we going to have social change and finally just wake up?
There has been much emphasis on the “me too” movement, which is awesome, and we celebrate different races, colors, and sexual orientations. But people with disabilities are left bringing up the caboose. They are the last thought about, the most vulnerable, and in need of our voices the most.
We just wish the Today Show had done more, with this experience of Shawn Johnson’s prenatal testing, to help remove the culture of fear surrounding Down syndrome. We need to help parents work through a prenatal diagnosis in a healthier way. We, and so many others in our community, wish the Today Show had used this opportunity to spread a positive message about Down syndrome. Despite this, we know there is so much love being spread about Down syndrome from other sources, and we are glad to be part of that movement!
On October 6, 2018 my daughter Cheyenne was born. When she was born, Cheyenne was rushed to NICU. Moments later a nurse came back and told us Cheyenne has water in her lungs and they have her on a breathing machine and she will be okay. Then they asked me an odd question, "Have you had the prenatal screening for Down Syndrome?" I thought this was odd, but I answered "Yes" and she asked "What were the results of that?" and I told her "they came back negative." Later a doctor came in and sat down beside me and told me and my husband "I need to inform you of something, I am noticing signs that Cheyenne might have Down Syndrome." It was as the world had stopped. I let out a long loud cry, as if the doctor has told me Cheyenne was dead. I grabbed my husband and sobbed uncontrollably. I remember telling my husband "where did we go wrong? maybe they are wrong, maybe Cheyenne doesn't have DS." All of these thoughts of Cheyenne not being able to walk or talk were stuck in my head. I had NO IDEA about DS and what I googled only showed me the worst case scenarios of babies. I told my husband that night "I don't think I can love her or take care of her the way she might need me to. I think if they would of told us this during the beginning of our pregnancy I don't think I would of kept her" A mother, someone who holds their child for 9 months inside their body was saying this. That evening I met Cheynne for the first time. I wasn't able to hug her, but I looked at her through her glass incasing in NICU and Through the next 2 weeks, I would go see Cheyenne every single day in NICU. Every day she progressed with her breathing, eating, and her color came back and she was beginning to look heathy again. I was even able to hold her and feed her. Every single day I worked and spoke with nurses and doctors who shared their stories of babies with DS and I pretty much was learning everything I could about DS. When I was home while Cheyenne was at the hospital still, I would constantly cry but I started reaching out online to others in my situation, I read stories form other families and soon began to realize that DS wasn't a bad thing. Not only was Cheyenne healing, so was I. Its been almost 4 months that Cheyenne has been born and she is in top notch shape. I almost forget at times she has down syndrome.
Looking back now, I am so ashamed of how I felt that night in our hospital room. I cannot fathom the thought of her not with me. I am so ashamed to ever feel as I could live life without her. Why did I grieve so badly? All those sad tears for nothing. There is absolutely nothing to be sad about when it comes to . Cheyenne has changed my life in so many ways. She has molded me and shaped me into a women, a wife, and a mother I never knew I could be. She has taught me so much about life and about a whole new community I was so blind to. I say this all the time "I wouldn't change my experience or my daughter for the world" and I still mean it.