2014 World Down Syndrome Day


Tomorrow morning is March 21st and my second World Down Syndrome Day.

Last year on WDSD, my son Alvaro, who has an extra 21st chromosome, was only 5 weeks old. It was the day that I “announced to Facebook” that my son had Down syndrome.

I was still reeling from the shock of his diagnosis and trying to find out what that meant on the large scope of life. I wondered how his condition would affect him and our family. I was also reaching a place of acceptance and wanting to share with the world that I was proud and lucky to have him as my son, no matter what condition he did or didn’t have.

Tonight I sat on the floor of my boys’ bedroom watching them play. Joel doesn’t know his little brother Alvaro has an extra chromosome. Joel doesn’t care. He doesn’t notice his brother has slanted eyes or lower muscle tone. He doesn’t realize his brother isn’t yet crawling while his peers have begun to walk. To Joel, Alvaro is just his brother. Fun and silly. Loving. Cute. And part of his everyday world. The first thing Joel asks for in the morning is milk. The second thing he asks for is Alvaro.

This picture of love and acceptance is what World Down Syndrome Day is all about. Before we became parents to a wonderful boy who happened to have Down syndrome, we knew nothing of the condition. All we knew was slanted eyes, body types, and slower speech. All we knew were stereotypes. Now we know acceptance. We know love. We know that individuals with Down syndrome are more like us than they are different. And we aspire to raise our son in a world where he isn’t measured by his chromosomes, but by his worth and dignity as a wonderful human being.

So this World Down Syndrome Day, educate yourself about the truths of Down syndrome. When you meet someone with it- don’t let their physical features be an indicator or reflection of who they are. Let their hearts and lives speak for them. Give them the dignity and respect you’d like for yourself.

Maybe one day, the world will be filled with many more relationships as open and pure as Alvaro & Joel’s.  Without taking account of how many chromosomes are involved.




Comments

Post a Comment

Popular posts from this blog

PTSD: A 6 Month Update

Image
It’s been 6 months since Alvaro’s accident. Six months since we were THISCLOSE from losing him. Six months since I have counted every day a blessing and have been more grateful than ever to have this child in my life and care. Interestingly enough, this 6-month mark is when I became aware I was suffering from PTSD. The shock of the trauma from his accident began to wear off a few weeks after it happened. Unfortunately, a whole new series of stressful and discouraging events immediately followed. This prevented me from being able to stop and breath and slow down. Simply put, I was in survival mode, dealing with one draining situation after another. Until one day I woke up and wondered how I had arrived at this place again? A place where I lacked self-care and rest. A place where I looked OK on the outside. I smiled and made jokes and told people I was hanging in there. But inside I was drained, dry, and depressed. On more than one occasion, I would admit the truth. Tha...
Read more

Skinned Knees

Image
Its midnight as I sit at my computer typing today's post. This is officially the last day of Down Syndrome Awareness Month. Six years ago I didn't know Down Syndrome Awareness Month was even a thing. And as I sit here and reflect on our 5th Down Syndrome Awareness Month I find myself grateful for skinned knees. I'm sure I sound a bit crazy right about now. What in the world does skinned knees have to do with Down Syndrome Awareness Month? For me, skinned knees means the world. It means joy and ability. It means inclusion and resilience. Let me explain. Five years ago I gave birth to a beautiful baby boy. And to be frank, I was scared sh*tless. Scared about what that meant for him. Scared about what that meant for my husband & I. Scared about our future. I had no idea what our future would even look like. How I wish I could turn back time and sit down with myself and say " Honey there is no need to cry! It's going to be okay. In fact, it's going to be m...
Read more

Filled to the Brim & Overflowing

Image
I saw an interesting and enlightening demonstration once. Technically the demonstration was performed to illustrate time management and priorities but I have never forgotten it. A man stood on stage with a glass container. He filled the container with large rocks until it reached the brim. Then he added pebbles. The pebbles, being significantly smaller than the large rocks, dropped into empty spaces and gaps left among the large rocks. The container appeared full. The man then pulled out a bag of sand. He proceeded to pour sand in all the gaps and spaces left from the pebbles. Finally, we all assumed the glass was really full. But the man surprised us once again, by producing a glass of water and pouring the water into the container, until finally the container overflowed. The container was at last truly full. While this demonstration was meant to illustrate how we should manage our priorities, I think it’s an appropriate depiction of my life. Today is my 10-year Wedding An...
Read more