Real life Down Syndrome Awareness
Moving on after a Down Syndrome Diagnosis
I have had lot of moms reach out to me since I began this blog. It happens weekly most times, and I love it because it means that all the hours I spend on this blog are not in vain. Information about Down Syndrome is getting out there and people that need it are finding it. There is one question that comes up more than any other, it comes in many forms but it always boils down to the same thing. When you get a Down Syndrome Diagnosis…
Down Syndrome- what I would have told myself in the beginning if I had only had the words. I was broken back then, but I healed faster than I thought possible.
Be sure to check out our new Children’s book Down on the Farm
I gave birth to our 6th child with the expectation of adding another beautifully brown eyed, boisterous personality-laden child to this world. I thought I had this raising babies thing down pat, most moms don’t do it six times, so I knew what to expect, or so I thought.
When my Cedar was born he had a surprise to share with us. He was born with Down syndrome, a
fact that had been hidden from us until the moment of his birth. When those two words were placed squarely in my lap, I was overcome with fear, grief- dare I say even terror of what this life was now going to be like. I felt life as I knew it was slipping through my fingers and I would never again be filled with joy and happiness.
I knew nothing of Down Syndrome except for the intellectual delays, the noticeable physical characteristics, and the stereotypes. I learned very quickly that even Google was not on my side, the information I found scared me more than comforted me. I cried so many tears that my face threatened to remain crimson, and my red sore eyes were glassy and red-rimmed. My fears came in waves as I was scared of the 16-year-old Cedar I had yet to meet, the 30-year-old Cedar who may not carry on a typical conversation, and the 45-year-old Cedar who might be here alone when I am gone. All of these fears while looking down at the peaceful, angelic face of a babe newly born and weighing 8 little pounds. I prayed, cried, read, and hugged this tiny human. I slowly began to realize that this babe in my arms was not scary and was nothing to be feared. In fact, this tiny human was going to teach me as much as I hoped to teach him. Each day I became stronger, I found other families who were in the same place I was, had been the same place I came from, and were moving forward to the place I wanted to be…at peace and smiling once again.
I searched out and found pictures of children who had Down syndrome that were smiling, reading, swimming, laughing, going to school, visiting the zoo, and just being children. What I didn’t find was all of this hope in one place. I had to search for it, I had to put together endless key words and search past the initial pages that popped up in Google searches to find the true stories of families raising children like my Cedar. They were like hope in breadcrumbs scattered here and there for me to find and grasp tightly to. That is when Cedar’s Story started to form at the edges of my mind.
What if I could help the next mom who was glassy-eyed, fear-filled and seemingly alone? What if she could find that other moms had felt the same feelings as she did, what if she could see beautiful families moving forward? What if she could find answers that were not sterile and full of medical jargon that she would glaze over in an effort to understand? I wanted to help that new mom and I wanted to educate others, surely there were people as ignorant as I had been. I wanted them to see not just my child, but also others like him, and recognize them as beautiful humans, not just diagnoses. I wanted them to see Down Syndrome and think hope, tenacity, confidence, kindness, joy, and amazement.
In short, I wanted to change how the world saw Down syndrome, I wanted to change perceptions. It was then that I realized my son was changing me in ways I didn’t know possible. His birth and diagnosis was going to have an impact far beyond the reach of just our immediate circles. He himself was going to change perceptions and I was going to help with the platform to do so.
I had already been an established blogger for a number of years before I launched this blog, I had already learned a lot through trial and error with my homesteading blog. With prayer, and urging, we launched this site in March 2017 and within 30 days we had hit over 20,000 views. I began receiving messages from women around the world (Philippines, China, England, Africa and so many more) saying that they were finding hope. It is with the generosity of a whole community that this is happening, by sharing stories from families around the world from diagnosis to topics that interest those raising someone with Down syndrome. It is the collaboration of many families, that has made this possible
So, Cedar was born, a website was launched, a community was knit even more closely than before and all because of a diagnosis. Down syndrome is not to be feared, it can be a beautiful journey and this little boy is teaching his mom just that. I want to change the world for this little boy, and all the others like him.
In fact, I want to be able to reach children when they are young and I am happy to share that we just released our very own Children’s book on Amazon. It is my hope that this book will help change perceptions and normalize these beautiful children who show the world tha they are #morealikethandifferent.
Down on the farm is Down Syndrome picture book (just click on the image below and you will be routed to Amazon where you can use our affiliate link to purchase your book) Oh, and we also want you to know that 10% of all the profits will benefit various Down Syndrome non-profits throughout the year.
You see, there is a twist. In this “Down on the farm” Down Syndrome picture book the book features 10 beautiful children who all have something in common, an extra chromosome. However, despite the children all having a genetic condition, the story has nothing to do with disability or even Down Syndrome, it simply showcases these beautiful children being children and having an adventure on the farm.
It was a beautiful sunny day in June, 2017 when I invited the children to a photo shoot that also included horses, ducks, bunnies, gardening, snacks and so many laughs. At the time my son, Cedar, was only 5 months old and it was quite emotional for me to see so many children with Down Syndrome in one place, it was the first time I ever had that experience.
I think that because Down Syndrome is rare, and we don’t see it that often outside of social media, we sometimes are uninformed about just how “normal” children who have Down Syndrome are. That means that we don’t know that they laugh, run, play, and get into mischief just like any other child. My hope with this book is to also inspire hope when parents get a diagnosis and they don’t know what their future is going to look like, they can see here that it can be just as wild and fun as if their child did not have a genetic condition. I also hope that for those who are not touched by Down Syndrome, this book will spark conversation about diversity. It will allow typical children to see that the same activities they enjoy are also enjoyed by children who may at first seem “different” to them.
Watch our book trailer here…
The vision has come full circle and the book is ready for the public to see. You can purchase your copy on Amazon and I would LOVE for you to also review it there! If you post on social media (Instagram) you can be entered to win one of our 3.21 necklaces by using the hashtag #downonthefarmbook and tagging @cedarsstory. I will pick one random winner at the end of March from that hashtag.
*We use Amazon affiliates program and there is no extra cost to you for using our links.
This is an excerpt from the transcript of his show “Disgraceful” that airs on Netflix:
“You can’t say “retarded” anymore. [audience laughs] It was just here. Don’t you remember? -“Retarded.” That’s how I… -[audience laughs] People get very upset. I don’t really support the arguments against it. When people are like, “You shouldn’t say it.” “Why?” “What if there’s one over there?” And you’re like… [audience laughs] We never said it like that. We were never like, “Look at that guy!” [audience laughs] You didn’t say it like that. You said it to describe an idea, or a situation, you know? If your friend was like, “I’ll pick you up at your house, and then we’ll come back to my place, and later we can go back to your house. And we can get your bags. And then, we’ll come back over here after that.” And your like, “That’s retarded. Why the **** would we do that?” [audience laughs] But now you can’t say that. Now you’ve gotta be like, “That’s not… smart. Your idea has an extra 21st chromosome, if you ask me.” [audience laughs] It’s not the same.”
The thing of it is, instead of a broad, outdated, and offensive term like “retarded” Tom has made it more specific and classified an entire population, those with an extra 21st chromosome, Down Syndrome as the butt of his joke.
Dear Netflix & Tom Segura,
You don’t know me, nor likely do you know anyone in the Down Syndrome community. The reason I make this broad assumption is that if you did, you wouldn’t find it funny to make statements like you did in your comedy show, Tom.
I understand that we live in a nation with free speech, I value that freedom, as I gather you do as well. But, with a freedom like that comes the responsibility to not spew hatred, racism, classism, or other negative connotations towards whole groups of individuals, least of all those with special needs.
I am a parent, Tom, I understand you will be joining the ranks of parenthood soon. I want the world to be a safe and beautiful place for my children, most parents would feel this way. I work very hard to help make the world a better place than when I found it, and I was given a special task when my youngest child was born.
You see, my youngest child was born with an extra 21st chromosome, something you referred to in your comedy show. You referred to an idea as being “retarded” but since that is not politically correct terminology these days, you said that the term should be replaced with “having an extra 21st chromosome.” That is where you went too far.
I understand that often the word “retarded” gets tossed around and frankly I don’t feel that it applies to my child, or that it should be owned by any of us who love those with Down Syndrome.
It is a dated, small-minded, and uneducated term that many are working hard to erase. I won’t even get on your case for your inappropriate use of that term, but I will say that you singlehandedly ignited a firestorm. You see, you haven’t just alienated and angered parents of children with Down Syndrome, but our friends, aunts, uncles, grandparents, teachers, neighbors, and so many more are outraged by not only your attempt at being funny, but your subsequent comments to parents of children with Down Syndrome, like Alyse who was standing up for her daughter Felicity.
You posted her comments requesting Netflix to remove the segment of your show and again used your platform to spew hatred and ignorance at the mother of a 2-year-old child. Do you know what I found amazing? When interviewed by the Chicago television station, she was civil, she did not use foul language toward you (unlike your fans used towards her and her child). She even said that if your wife unexpectedly gave birth to a child with Down Syndrome, our community would welcome you. You see, she has compassion, kindness and an ability to empathize with others, something you are sorely lacking.
Now on to Netflix and publicity. There is a saying in the entertainment world that no publicity is bad publicity, if both of you feel this way, than you have succeeded. You have earned enough bad publicity for a lifetime. I would say that the efforts of so many news anchors, Down Syndrome advocates, and reporters to reach you have come back void because you really have nothing to say for yourselves.
That is because the whole thing is disgraceful. I will sign the petition that is fast approaching 80,000 signatures asking Netflix to remove your special and ask all of my followers to do the same. I will do this not because I don’t believe in freedom of speech, but because your freedom of speech has incited hatred by your fans towards those like my son, and Alyse’s daughter.
