On Our Third Down Syndrome Awareness Month
October first marked the beginning of our third Down syndrome awareness month. A month where we can educate and inform those outside of our community for thirty-one days straight without feeling like we are shoving it down their throats. A month where our children and loved ones are celebrated on a grand scale for being exactly who they are, something we are now fighting so intently to keep alive. We are now over halfway through this year’s DSAM and I can’t help but look back to where I was at this time last year, and the year before that.
The first, Oliver wasn’t even here yet. I had only received his diagnosis six weeks earlier and felt this extreme pressure to celebrate when I was still very much grieving. I had no idea what I was heading into. The majority of information we had received had been negative. His diagnosis came along with a stack of books that did nothing but outline every worst-case scenario there was. I began to post small facts on my social media to educate my friends and family about Down syndrome, but I was just as clueless as they were. The day that Oliver was born would be the first time I had ever met someone with Down syndrome.
The next year, October first began the start of our second DSAM while simultaneously being the day that Oliver’s father left. He was not even ten months old and I was left to raise him alone. I found myself feeling the exact same way I had felt the year before, scared. I had every intention of celebrating that month, I posted one fact for each day like I had intended to, but the celebration didn’t go any farther than that. Every plan I had set in place was now gone, I was lost. Publicly, I celebrated with all of the friends I had met in the community, but in private I had more questions about what our future held than information I passed out about Down syndrome.
As our second DSAM came and went, my struggle with celebration and education created a need to do more. I wasted our first two DSAMs. I had spent 62 days offering vague surface level information about the most important person in my life. Half of the time I was learning while I taught, sometimes I didn’t understand what I was posting about. I didn’t even know that Down syndrome awareness month existed before Oliver. I knew that DSAM needed to become more than what it was. I needed it to be more; I needed to be more.
Our third began with no preparation, no set of hard facts ready to be shared, no intentions of doing anything in particular, but not for the same reasons as years past. This year we celebrate DSAM with an ever-growing community following Oliver’s journey. I now spend every day raising awareness for Oliver, interacting with people who want to learn more about Down syndrome, who thank me for educating them, who love Oliver even if they have never met. This year there is no fear, no feeling of being lost, no empty void that the second DSAM left me with. This year I know what our future holds.
It took three of these to get to a place where I finally feel like I am educating instead of grasping at straws, hastily plastering facts I’ve never even researched onto my profiles. This year I finally feel like a true advocate. We attended our first buddy walk last month, and as I stood in a crowd of people celebrating Down syndrome so openly I wondered why it took so long for us to get there. I once thought that Down syndrome awareness month was to teach people about hypotonia and how long on average Oliver will live, why it’s called Down syndrome and who discovered it, and at first it might have been. But now, DSAM is a platform to educate beyond factoids. It’s to show the truth in the struggles and the celebration in the accomplishments. That for one month I get to tell the world that every hospital stay, every therapy session, every potential diagnosis, every delay, every single IEP form is absolutely and irrevocably worth it.