To prepare for this blog and, ultimately, how I personally plan to celebrate World Down Syndrome Day, I spent hours on the internet looking at different sites. I wanted to understand what 3/21 means to me and my family—how, in a single day, could we promote the awareness of something that has touched our lives so deeply? After all, this is our reality now.
I thought about the word “awareness” in a new way. You know how sometimes you look at a word that’s spelled correctly, but it just doesn’t look right? In that same sense the word “awareness” didn’t feel right in the context of something that silently permeates every second of everyday. Do I invite people to spend the day with me in order to be “aware” of how Down syndrome affects my family’s activities? Because, really, what would they see that’s any different from a day in the life of any other mother of a 15-month old? I change diapers. I make bottles. I play fetch (not with the dogs, to their dismay).
Awareness is cognizance, comprehension, consciousness, familiarity, and perspicacity (my favorite only because I can’t pronounce it). So awareness basically means “knowledge”. Could I promote awareness in my community by providing knowledge? I immediately had thoughts of my college Philosophy course and the hours of lectures I sat through not understanding a single word. Well, I found quite a few websites that could accomplish that. So maybe I can just send out an email to everyone in my address book with links in it that would promote awareness of Down syndrome and say, “There. Done.” But then on 3/28 everyone would end up like me a week after my Philosophy class ended…with no memory of anything I had learned the entire semester.
How could I effectively spread a message that I could feel but not vocalize?
I dug deeper and found some more synonyms for the word “awareness” – admiration, affection, appreciation, enjoyment, acknowledgement, fellowship, recognition, intelligence…now these are words that resonate. They are three dimensional words that envelop me in a warmth that inevitably causes me to break into a smile within seconds. The loving affection I feel when I see a picture of my son or watch him play with my sister. The comforting fellowship I feel when I talk to my friend Catherine or read her son’s battle log. These words evoke feelings, memories and emotions…something that comprehension just can’t do.
Aidan’s Down syndrome has changed my life because it has changed ME. I didn’t change because of the knowledge I gained of Down syndrome. In fact, I think too much knowledge is dangerous sometimes. Anyone who knows me understands how too much knowledge can cause a worrier like me to dwell and turn inward. And turning inward could make me miss so many amazing things with Aidan! The shift that occurred within me started as a need to sort myself out emotionally and be strong. It’s evolved into a patience and strength that makes me look in the mirror wondering what happened to the weenie who used to avoid all of the “hard stuff”.
Awareness is my ability to be present for every second in my life. Awareness is experience of being the parent of a child with special needs but not really knowing what that means. It’s the peaks and valleys of accomplishments and struggles. It’s understanding how to admire Aidan for his determination and focus, appreciate all of the people we have in our lives who are committed to Aidan’s success, enjoy every wave, head butt and ‘dada’, and acknowledge that I don’t have to know everything right now. Awareness is the affection I have for Aidan, my husband, our families, our therapists, our providers and our friends who have rallied around us and cheered Aidan on.
So how am I going to promote awareness on World Down Syndrome Day? I am going to affect, admire, appreciate, enjoy, acknowledge and recognize all of the JOY I see in my son every day. I’m going to surround myself with people who are accepting, welcome questions, and try to help people feel what it’s like to be me…the mother of a beautiful son who sees the beauty in everyone and everything…a son who can find joy and evoke joy in every second of every day. That’s the beauty of Down syndrome.