hellobeautifulcreatures

I’m coming out as disabled. It’s about time. I’m a 25-year-old with 80-year-old bones. Inside my mother’s womb, I developed mostly normally. But my legs didn’t show much growth in the sonograms; there was a mutation lurking on the long arm of the COL2A1 gene of chromosome 12, involved in making Type II collagen . One letter switched in the gene, an amino acid wrongly substituted , cartilage forming too tender within me. My rare bone disorder , spondyloepiphyseal dysplasia, causes collagen in the joints to form incorrectly, short stature, arthritis, neck instability, scoliosis, joint inflammation, chronic pain, and other issues. It’s actually a form of dwarfism; I just happen to be on the taller end of the spectrum at 4’6”. Facing all of this, knowing at a young age that my bones would deteriorate much quicker than my friends, wasn’t scary. I’d need joint replacements and surgeries. I knew my path. I learned to love my body for what it is and all I can do, even with pain. For many ...

I expected to live my entire life without price-shopping for truck-stop showers. Then I spent the night in Breezewood. The adventure began last August when my main squeeze James and I drove to Colorado. We passed through Breezewood, Pennsylvania, as do many drivers heading to the Rust Belt and beyond. "What do you think about vacationing here for a week," James asked. I laughed loudly and dismissed the idea. If you've been there, you understand why. Breezewood has been a travel hub for centuries. It was a stagecoach stop in the late 1700s and then became a stop on the Lincoln Highway, America's first cross-country road. The Pennsylvania Turnpike opened in 1940, and thousands of World War II veterans exited at Breezewood, stopping at what now is the Gateway Travel Plaza to trade their unit patches for meals. Today, Motorists driving between I-70 and the turnpike are forced off the highway and onto a congested half-mile stretch of expensive gas s...

Finally. FINALLY. I've lived here for almost two decades, and finally I have found out what the secret is to the mysteriously happy, glowing ladies I spy every spring. I mean, it's Mud Season for goodness sake - at this point of the year I am pasty-white, anemic, and damn cranky from lack of warmer summer rays . I always assumed these serene women must be the Adirondack equivalent to the Stepford wives - blissfully unaware that they have entered the post-skiing/pre-hiking-biking-boating/what-do-I-do-today season. The Muddy Background Info Let's take a moment to set up how this adventure came about... It's spring break, my son has had no school for two weeks, and I'm working from home trying to decide which Mud Season activity to highlight. Oliver is lamenting (and by lamenting I mean repeating over-and-over-and-over as 5-year-olds are wont to do) the fact that I won't take him out to ride his bike. Now, in my defense, this is his brand-new Christmas bike, bigge...

By Alison Smith-Squire The cot was lined with cuddly toys, the bedroom curtains pulled half -way to allow the gentlest of rays to spill pools of sunlight on the carpet. Now and then, a smattering of squally summer rain hit the window - the only sound to interrupt the silence within. Inside the cot lay a beautiful baby boy . Dressed in a pastel-blue sleepsuit, his hair combed and his chubby face bath -time fresh, this was Charlie Gard, finally at home, where his parents, Connie and Chris, fought so hard for him to be. Advertisement Of course, this represents no victory for anyone. Charlie, who had passed away days earlier, was lying in a specially chilled "cuddle cot", allowing his family to spend more time with him before he was taken to a funeral parlour. The little boy actually took his last breath at 3.12 pm last Friday. A private moment with only his parents at his side. His respirator was withdrawn and he slipped away 12 minutes later. A quiet end to a l...