Down syndrome is part of our lives, and frames how I think about Ellie learning.
Other things are also part of our lives, things like family and friends, church and running, reading books, taking hikes, attempting to keep the house in something resembling order, and drinking coffee.
This post isn't for my regular readers as much as it's for the parents who find this blog via the common search terms "double bubble down syndrome" and "double bubble avsd."
Two years ago, I believed we were living a "worst case" scenario. Down syndrome. Heart defect. Double bubble.
Although surgery and hospital stays are awful, our scenario is hardly "worst-case."
Our little girl is alive, she is happy, she is thriving.
If you're the praying type, please take a second to say a prayer for the mamas whose little ones with Down syndrome did not make it through surgery, through the first year, or through the NICU. Too many parents in our community have said their "good byes" far too soon.
For the parents facing a new Down syndrome diagnosis, I cannot promise you that everything will be okay. I can point to this little bundle of energy and tell you that for us, it's okay. Our lives are okay. We get out. We have fun. Our kid gave us a run for our money, but she is fantastic.
I don't mean, "She is fantastic" as in, "We deal and make the best of things." I don't mean, "We grin and bear it and live a sad life." I don't mean, "We are those perfect parents who smile and spend all of our time caring for a kid with a disability."
I mean, this kid can light up a room. Other kids might move more. (Okay, pretty much all other kids can walk more.) Other kids might be easier to understand. But no one works a room like Ellie. She is funny. She is charming. She is naughty.
Down syndrome. Heart defect. Double bubble. NICU. Low tone. Developmental delay.
Strong. Determined. Joyful. Surprising. Charming. Naughty. (That shows up a lot, she's approaching two.) Energetic. Flexible.
Those lists can and do go together.