When I was on KPBS Midday Edition with Maureen Cavanaugh I mentioned my experience with Down syndrome being a bit like Chutes & Ladders. If you don’t know the game it goes a little like this. Some moves can send you high up the board others can have you sliding back to where you began. During the month of October life was all ladders. Dexter’s personality was starting to show and he was doing great. Ladder.
The NPR series was really happening, Down Right Awesome was becoming a reality. Ladder.
In November though, things went a little south.
Things slowed down a bit and it gave my mind time to wander into places I’d rather it not go. I worried because Dexter seemed like he wasn’t babbling as much and “da, da” was the only sound he was making. I also worried that he wasn’t trying to crawl as much. Chute.
Over Thanksgiving I got caught off-guard by an older woman wandering through the Avila Barn Shop near San Luis Obispo. I had Dexter wrapped up close to me snug in the carrier while I happily inspected jars of jam, hot cocoa mixes and handmade ornaments. When I looked up, there was the woman. She looked at Dexter and then to me and said “sorry” and winked. This all happened very quickly though in my mind it runs in slow motion. In a knee jerk reaction, before I realized what she was apologizing for, I said “no worries”. I have a tendency to wing out my arms and bump people with my elbows so I assumed I’d done it again, and she had mistakenly thought she bumped me. Within moments though I understood what she was “sorry” for. By this time she was lost in the crowded shop and I was left standing with words that needed to be said but no place to go. Chute.
I did not share this with anyone at the time it happened and carried it with me for a bit before I even shared it with Jason. His words, “f-her” – and I know he meant that in the best possible way. I shouldn’t let someone who was obviously misinformed get me down. But I did. I am human.
Since that day I have had time to reflect on that missed opportunity to educate the woman in Avila Barn and until recently I’ve just beat myself up for words not spoken. What helped me turn the corner was a deeper look into why I missed her remark and the answer is quite awesome. Her remark flew over my head at first because Dex and I were just hanging out. Yep, just a mama and her chubby marshmallow man (he’s quite chunky, very white and super sweet) enjoying the day. Down syndrome was the furthest thing from my mind. Ladder!
I am so excited to wrap up the last couple of weeks in 2011 with my family and feel really grateful for all the ladders and the lessons learned from those darn chutes. We have so much to be happy for. Joy for our world!
Be a Santa Cause
With Christmas upon us the best gift I can imagine is acceptance for my son and support for research that can make a big difference in his life. If you’ve got someone on your list that just has everything and you’ve resigned to just get something, maybe try being Santa Cause this year. Consider making a donation in their name to the Down Syndrome Research and Treatment Foundation.
DSRTF’s mission is to help accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome.