If you have known me for more than 12 seconds, you know that my son Dominic has Down syndrome. You might not know exactly what that means in scientific terms. Down syndrome is known as Trisomy 21–that simply means that the 21st chromosome has one extra copy. The other chromosomes are paired off 2 by 2, one from mom, one from dad. Dominic got an extra one somewhere in there. It means that some of the genes that are on that chromosome are overexpressed, and then there are some areas of development that are underexpressed. I haven’t seen the science, but I’m guessing that the genes that are overexpressed are the genes that are responsible for love, joy, happiness, and determination.
While some in the medical community call Down syndrome a birth “defect” (The CDC lists it as the most common of all), Trisomy 21 is, to me, simply one more variation of this human condition we all share.
You haven’t asked, but you may have wondered–people often do, apparently–if we’d change Dominic if we could. He has a lifetime of challenges ahead of him that are different than those that the rest of us face. My answer is a resounding NO. I would not change one thing about Dominic. Well, that may not be true. I would love for him to get a hair cut, but right now not even the promise of ice cream is enough to get him to sit still for the clippers. Barring the hair issue, there is nothing about my son that I would change. Not. One. Thing.
What I would like to change, however, is the world he lives in.
I would like the world to become more inclusive. I would like people to look at others and see their souls, see them for who they truly are instead of the label that is affixed to them by their chromosome count (or diagnosis or the clothes they wear or the career they choose or the background they come from). I would like for the world to see my son for who he IS–a little boy with a beautiful, God-given personality who has a full range of emotions and limitless potential.
The month of October is designated as a month to raise awareness about #Downsyndrome. You already know that I can’t contain myself to just one month. Anytime you have a question, please don’t hesitate to ask. If you know a mom who is facing a new diagnosis, have her send me a message or check out our page www.facebook.com/Trisomy21Club.
Here’s to raising awareness….and inclusion…..and to Dominic.