Spotlight on Living with Phelan-McDermid syndrome.
Many of our parents have chosen to express their truth through words and images on websites and blogs. Here we share and celebrate our caregivers, our children, and punctuate truths about living with Phelan-McDermid Syndrome.
People living with Phelan-McDermid Syndrome (PMS) experience countless twists and turns over the course of a lifetime due to the complex nature of the disability and its inherent uncertanties. In short, PMS is a beast, an unrelenting thief that robs the health and development of those directly affected, severely and impacting the family dynamic. It launches families into a world rife with unexpected and unfamiliar medical, educational and legal challenges, while families continue to advocate for research, funding, treatments and cures.
Amid the chaos of living with Phelan-McDermid Syndrome, somehow families have chosen to share their experience, offering value insight into the highs and lows of life with their children who are diagnosed with PMS. One might wonder what it is that enables families who are immersed in the day-to-day care of their loved ones to give a little more to share with others intimate thoughts, emotions, challenges and joy. What is that quality called? It is bold, it’s scary, it’s heartbreaking, it’s exuberayting, it’s difficult, it’s beautiful, it’s joyful, it’s a gift.
In a word, it’s love.
We shine the spotlight on a PMS mom and family advocate, Brittany, who is sometimes that person who writes a social media post that provides just the right ray of sunshine to help others through their day. I asked Brittany, “Why have you chosen to share your story?” Brittany reports,” Life with Ellie-girl is beautiful and difficult and devastating and fun and FILLED with love and emotions. Sometimes all of that love and emotion bubbles up to overflow into a blog post. I choose to share our experience because so many people don’t understand what it is *really* like to be the parent of a child with special needs. I wanted to give insight to the deep love and the simultaneous deep depression. Her story deserves to be told; our story deserves to be told.”
Link: https://alifeofrarity.wordpress.com/