October is… DOWN SYNDROME AWARENESS MONTH!
If you were to ask me before I was pregnant with Bernadette what October meant to me, I would have answered all things fall. Pumpkins, sweaters, boots, and scarves. Those things are all lovely and the absolute essence of fall and kick off the holiday season in my book. But now, October is so much more.
Bernadette was born just a few days into October. It seemed ironic to me that she was born in Down syndrome awareness month. Now it has become one of my most favorite things.
I’ll be perfectly honest for the sake of letting you into my own heart. That first year I held her as that tiny perfect infant, I wasn’t ready to celebrate Down syndrome awareness month. My world at that moment was more centered around heart surgeries anyway. I remember seeing other mamas post on the social media accounts facts about Down syndrome. And while I was hopeful that one day that would be me, at that moment in time, I was still adjusting to my new world. And, like I said, heart surgeries dominated the first couple months of her life, spending two whole months back and forth between the CICU and NICU as she struggled through two heart surgeries.
October came. Once we were home, I lost all sense of time. My days were spent tube feeding and attempting tube weaning, pumping, keeping track of three little girls, starting therapies, going to and from so many appointments, and just trying to survive it all.
Bernadette’s first birthday was soon fast approaching and this time around I was getting excited as I embraced the upcoming Down syndrome awareness month. I was in such a different place, excited about sharing all the wonderful facts with our friends and family who maybe didn’t know that much about Down syndrome. I was ready to start the conversations, to share openly about our own story and whatever else people wanted to know about. Shortly after her first birthday, just a few days into October, our city got hit hard with the California fires and we found ourselves evacuated from our home for the safety of Bernadette and all my ideas for sharing facts on my social media outlets were thrown out the window. I was glued to the news watching from a distance as the first responders fought long and hard to put out the fires in our area.
Life eventually continued on and here I find myself. Another year lived with Bernadette, getting ready to celebrate her second birthday. Ready to share all of the amazing and wonderful things about her and Down syndrome. It’s important to raise awareness. And while Down syndrome is only a part of our story and not our entire story, it does have an important place in our lives. For me, this month reminds me of how far I personally and emotionally have come from the time I received the prenatal Down syndrome diagnosis until now. It reminds me of all that we have been through in such a short amount of time with her and how much life she has already lived in her first two years but how much she is thriving. She is feisty and full of strength and it is one of my greatest honors in life, to be her mother.
It also brings up those feelings of not feeling ready those short two years ago to fully embrace the journey set out before us. I think that’s important to note. It can feel incredibly isolating when processing through all the emotions wrapped up in a curveball such as a special need’s diagnosis. There are so many thoughts swarming through your mind and the desire to accept it and move forward with life is there, but it is also ok to acknowledge exactly where you are at in the process. Embrace the emotions as you work through them knowing it is all part of the process. It’s all part of your own story, the circumstances and things in life that shape you into who you are becoming too. The mom who can empathize with a diagnosis story and also the mom who can now see the beauty in the diagnosis, who has embraced it as part of their God-given story.
Join me this month, my friends. No matter where you find yourself in this journey, a new diagnosis, years into it, one with a friend with child with Down syndrome, wherever. This month is all about raising awareness, shouting the worth of our kiddos, spreading the joy that we have found in raising a child with Down syndrome, and watching our own selves grow as we walk through this part of our stories.