Does my disease make me a burden?

I’m in Barbados with my best friend, riding shotgun in her mom’s Jeep, guiding my hand and arm to ride a wave of air out the window as we jet down the highway from the west coast back to her family’s house in the south. It’s the last day of my holiday stay and we’ve been chatting about life. I’ve known Marielle since 2004. We met right at the start of our freshman year at the University of Miami and there’s not a lot we haven’t covered, but getting older and starting to approach all of the big life things that come with it has turned our tone a bit from our normal jokes and singing.

“This is awful to ask,” I say, “but is Down Syndrome hereditary? I realize that I don’t actually know much about it.”

Marielle’s little sister Natalie was born with Down Syndrome and, for as long as I’ve known Nats and likely for the full 27 years of her life, she’s been the the most glitter-and-pink obsessed person I’ve ever met. Their uncle Eddie had Down Syndrome too, until he died in late 2016.

“It’s not, so it’s always been interesting to me that we’ve two people in our family with it, so close together.” Continue reading “Does my disease make me a burden?”

19 years.

Lala Jackson T1DToday marks 19 years since my type 1 diabetes diagnosis. It’s meant a lot of needles. Guesswork when my life is on the line. Lost sleep. Insurance fights and ignorant doctors. Fear. An incredible weight that threatens to break me sometimes because this thing that so deeply affects my life and my well-being and my future is never going away.

But it’s also meant resilience. Empathy. Learning how to shine my light brighter for myself and others. Understanding the strength of my voice. Learning how to fight harder because, in so many cases, our lives depend on it. A deeper faith in myself and those who care for me. Having people in my life who seek to protect me in ways humans don’t typically have to do for one another.

But mostly, it’s meant learning that type 1 diabetes – that having a chronic illness – doesn’t define who I am. Continue reading “19 years.”