pandemic
I can still remember our family’s first encounter with disaster preparedness–or lack thereof–it was the day of 9/11, 2001, and my son Rob was four years old. My husband and I had waved him off to preschool on that beautiful, bright blue morning at our home
state-advocates
We find ourselves celebrating our third consecutive World Down Syndrome Day (WDSD) against the backdrop of a global pandemic; though, undeniably, something has recently shifted. While much of the world, and certainly much of the United States, has decided that it is time to turn the page, close the book,
pandemic
As the mother of a medically complex child, I was stunned by a recent Facebook post by a scientist friend who is cautiously advocating for dropping mask requirements in schools. He’s posted the recently released “Urgency to Normal” toolkit. My friend reminds us that he “was all-in at the
pandemic
September 24th felt like an eternity away. September 24th was my daughter Myka’s 12th birthday. We began counting down to her big day the minute the CDC, last May, approved Covid-19 vaccines for kids 12 and up. Myka, the youngest of my three kids, is the only unvaccinated person
pandemic
Joyful, silly, and smart are words my husband and I would use to describe our six-year-old son. He is a child who knows no stranger, genuinely loves everyone he comes across, and is obsessed with cars. The world is his oyster, and he loves being an active participant in life!
pandemic
The CDC just recently lifted the mask mandate for those of us who have been fully vaccinated. Hurray! The moment we all waited for, right? Except that for some of us, our medically-complex, under-12-year-old children are still at risk every day in this Covid-19 world. We trusted the school districts
pandemic
My name is Erin Gabriel. I live in Beaver County in Western Pennsylvania with my husband and three children, Collin, Bridget, and Abby. My youngest daughter Abby is a beautiful, fun, mischievous ten-year-old who loves playing with her big sister and brother, going to the theater, exploring the outdoors, and,
pandemic
“Back to school” has been my favorite time of year since I was a kid looking forward to new friends, activities, things to learn, and (my favorite) school supplies. As a mom, I still look forward to the promise and potential a new school year brings (and I still love
pandemic
Our families are being confronted with the terrifying decision to send our kids back to school, risking their lives, or keep them home and miss critical instruction and therapy. The ramifications of these choices are mind-blowing. From learning to therapy to social integration, school is the cornerstone of community inclusion
pandemic
It defies logic that any human being would refuse a simple action such as wearing a mask which, however inconvenient, could prevent the completely preventable: passing a potentially deadly virus to a loved one, a friend, or a child like our Gabriel. Gabriel will be five in November, having long
reflections
We’re pleased to introduce a new series for the blog: “We’re In This Together” with our LL blog master, Jeneva (who’s also the author of our “Sharing the Journey with Jeneva” series). As parents, caregivers, and self-advocates who've struggled with unknowns, isolation, fear, stress, and
preemie
Samantha McGovern lives in Springfield, Virginia, with her daughter Josephine and her husband. Samatha is a member of Little Lobbyists. Tell me about your family’s medical needs. We’re a pretty unique family of three: each of us has medical needs. Two years ago, Josephine’s dad was treated