Today is World Down syndrome Day! You or your child may be unknowingly participating in some events today and might be wondering what is going or what holiday it is. Many parents will go to their child’s class to read a story about Down syndrome, you will see a bunch of funky, mismatched socks on your Facebook or in the work office today or you may have gotten your drink paid through at the Starbucks drive through today and given a note about this random act of kindness. Why do we celebrate today, you might ask? Well, March 21st in numerals is 3-21, representing 3 copies of chromosome 21 (trisomy 21). All people with Down syndrome have an extra copy of this chromosome. Today, we celebrate my son Ronin and my cousin Cu Li who lives all the way across the ocean in Vietnam. Despite the belief that Down syndrome is genetic or you did something to cause Down syndrome in your child, both are false notions. My aunt and I just happen to be lucky (1 in about 700 lucky). With Down syndrome being the most common genetic disorder, there are still many false notions and information about Down syndrome. So one reason we celebrate is to bring awareness and to show the world that people that have Down syndrome are more like the typical population than different.
You may think negatively when you see that trisomy 21 is called Down syndrome. It was named after John Langdon Down in 1866, who first identified the syndrome. The word “Down” may be seen as sad or beneath which may be misleading at first to parents who receive the diagnosis but it just happens to be the name. For our family, there is absolutely nothing down about Down syndrome. The only thing down about it is the way people view people with it, like my son and others who have disabilities. You really come to realize how the world works when you have a child with a disability; it can really come as a shock and sadden your heart. There are kind people out there but also there are the cruelest people. How they look at my son as less just because of the way he looks, they assume he can’t do anything or won’t be anything of worth based on a tiny little chromosome that affects people in different ways. They also have opinions on how he doesn’t deserve to be living here on earth with his family and doesn’t deserve to be a person; with his own wants, needs, and dreams. No two people with Down syndrome are the same and medical books can only tell you so much about what their life might be like. Rest assured my son is about to break barriers and prove to the world that he deserves to be here and living and while doing that he will change the world for the better and here is how.
People that have Down syndrome can be born with an array of medical issues ranging from heart defects to thyroid disorders to intestinal problems. When we received the official diagnosis at birth, he was checked over for all the standard complications and I was scared to death. Then you come to find out some other interesting medical revelations related to your unique child’s specialty care. We have to do at least an annual CBC yearly to check for Leukemia. People with Down syndrome are slightly more likely to develop this but in turn are much more likely to go into remission than the typical population due to their unique genetic makeup. In addition, people with Down syndrome are far less likely to develop mass tumors in their body. I also found out that my son does have a higher chance of getting early onset Alzheimer’s, as early age of 30 or 40. It’s a very sad and scary thing to think about as he is only 3 years old right now. Alzheimer’s is a devastating thing for any family to have to come to terms with but many medical professionals believe that the cure is out there and possibly the information may be found because of that extra 21st chromosome. Down syndrome currently is a very underfunded medical disorder but I feel like there are so many medical breakthroughs that may be found in my son’s or others with Down syndrome unique genetic makeup.
Ronin will be judged by the way he looks until the day he dies. People with Down syndrome have similar features that are easily recognizable to the public. My older son who is 7 could point out people we saw in public with Down syndrome before he entered kindergarten, so I know others can see my son’s differences. We get many stares in public. It may be because they notice his Down syndrome or they just notice his radiant presence. He was born this way and this is the way his genetics were made and they cannot be changed. In a world, that is scared of different, my son will show you that we are all unique and perfectly the way we are supposed to be. People should not be labeled or judged for their appearance, for the shell does not always showcase what is inside. People should be judged for their actions and what they are bringing to this world. Are they making the world better or worse? I can’t tell the future but I would bet that my son will change hearts and minds as he journeys through life.
One myth is that people with Down syndrome are always happy. It’s a total myth. Ronin is 3 and throws tantrums just like any other threenager. He gets mad, sad and has experienced every emotion under the sun just like everyone else But for the most part, he is truly awesome. He makes people smile in public. He goes up to random strangers and says hello and usually tries to give them something or share what he has. He loves to give hugs. His presence just shines wherever he goes. I wish I could do all that but I could never get away with what he can do to spread kindness. I feel like Ronin has made everyone in my family a better person, and even our friends too, I think. I think because of him, our actions and how we treat others have changed for the better. Ronin has two older brothers and they will have a different childhood than their friends at school. They will be known as having a brother with Down syndrome but I’m hoping that will be a positive experience in the years to come. They love Ronin and will do anything for him. Just as Ronin loves his brothers as well and will always be there for them. I feel like since Ronin has been born it’s just set off a domino effect of love, kindness, and acceptance in our family and our circle of friends. I’m hoping the dominos will keep going and spread outwards as people keep meeting him and get to know our story. Our world is in desperate need of kindness. If only the world could follow Ronin’s lead and example.
As a mom, and as a person you search for the moments or have an epiphany in life where you have come realize your purpose and your meaning to be here. I had no idea I was going to be given a child with Down syndrome. Or maybe I did? I’ve never told anyone this but I had a flashback of a thought I had months after he was born. We had no idea he had Down syndrome until after he was born. I remembered that in my last trimester I kept seeing people with Down syndrome at work and out in various places. I remember thinking to myself “Maybe my baby has Down syndrome.” And there he was; 47 chromosomes and all. This little boy has changed my life for the better. You see the bigger pictures in life, you see the beauty in all things, and you learn to take time to see life for what it’s worth. Our life with Ronin and with Down syndrome is full and complete. We are living this life we were meant to live and will change the world one step at a time.