“My Worst Fears” – Chelsi
“My Worst Fears” – Chelsi Do you ever feel like all the work we do for our kiddos is not…
“The Rare Sibling Experience: NORD Webinar” – Erin
“The Rare Sibling Experience: NORD Webinar” – Erin The National Organization for Rare Disorders (NORD) recently hosted a webinar on…
“Coping With the Fear” – Nancy
“Coping With the Fear” – Nancy I had just poured myself a cup of coffee and settled in for the…
“Creating a Meaningful Life in the Midst of COVID” – Nancy
“Creating a Meaningful Life in the Midst of COVID” – Nancy It’s 3 AM and I can’t sleep. Again. I…
“Are You a 21st Century Pioneer?” – Nancy
“Are You a 21st Century Pioneer?” – Nancy Pioneer. Verb. A person who is among the first to develop or…
“CLOSED.” – Nancy
“CLOSED.” – Nancy “School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t…
“Progress” – Lacy
“Progress” – Lacy My son recently said my name for the first time. I don’t mean he called me Mommy….
“Our Journey Into Medical Marijuana for Epilepsy” – Nancy
“Our Journey Into Medical Marijuana for Epilepsy” – Nancy The following is our journey into using Medical Marijuana (MMJ) with…
“I Wish I Had a Brother” – Janet
“I Wish I Had a Brother” – Janet I wanted to talk a bit about something that my son said…
“Creating Capacity” – Janet
“Creating Capacity” – Janet When I was faced with the CTD diagnosis of my son, who is now 10, I…