On Saturday, Kidz That Care, a nonprofit organization in Charlotte, visited Ben's Easterseals UCP group home to "Pack the Pantry" with groceries and beautify the front porch with flowers. Ben joined the group outside and watched them plant poinsettias, sweep leaves and wipe down tables.  I wasn't sure how engaged Ben was in the activity but when I tried to take him for a walk, he made it clear he wanted to stay and observe. He hugged the one adult with the group (not the photo above).  When the group was leaving, Kidz That Care asked to take a photo with Ben. I noticed how Liam ..read more

  On September 27 of this year, we introduced Ben to our new puppy, Bailey. The pup was just two months old and on her second day with us. I wanted Bailey to know Ben from the start – get used to Ben's wheelchair, loud vocalizations and rough touch.  We started out slow, with just a few minutes of interaction and then a break. We encouraged Ben to use an open hand to pet Bailey. We were careful not to let Ben grab her too tight. We did this as often as we could, each time giving the two a break and then bringing them together again. The process has worked: The two are friends. N ..read more

  In 2012, after conducting a blood test on Ben, GeneDx reported that he tested positive for a mutation on the MECP2 gene on the X chromosome. The summary also said the information was inconclusive for Rett Syndrome. I didn't have the mental capacity to find out what all of it meant. I realize now, that even if I had, I wouldn't have found much of anything about Rett Syndrome in males. The research didn't exist yet. It has since blown up. About a year ago, I researched Rett Syndrome in males and reached out to a few doctors conducting successful clinical studies on mice. They return ..read more

  My winter story in Upstate Lake Living Magazine features four towns in Western North Carolina with ski and winter activities. Although Ben is not one for cold-weather sports, I did find it interesting that Beech Mountain Resort offers Adaptive Ski Week in January. Read the story below.  ..read more

  An art project we did at Ben's group home this summer. Ben moved into an Easter Seals group home on September 12, 2022. Today, we celebrate one year with him not just living there, but thriving. Ben's formed friendships with his housemates and the staff who work there.  The move to this Easter Seals group home was his second time moving out of our house. In 2021, Ben moved to Greensboro, 90 minutes from our home in Charlotte, North Carolina. He'd been living in an AFL - alternative family living - situation through a different agency. It didn't work out. For more details ..read more

  Walking in the neighborhood When it comes to locating resources for Ben, it's taken patience, time and energy. I've had the support of my husband, Ryan, and family to do the administrative work it takes to find resources for a person with disabilities. I'm fortunate to be able to have the time to hunt down resources for Ben – and I also enjoy it. I talk with families often, and I've seen a pattern in the ones who have a difficult time gathering information and resources. They come to me frustrated, disenchanted and sometimes with the wrong information.  Here are my sugges ..read more

  Carolina Beach, NC This story I wrote for Cardinal & Pine, a news outlet in North Carolina, gives us a starting point for Ben's Beach Bucket List: 6 Must-Visit North Carolina Beaches That Are Wheelchair-Accessible ..read more

Coastal communities are helping people with disabilities navigate a beach vacation through ramped and paved walkways, accessible hotels and mobility mats. And beach wheelchairs make it possible for wheelchair users to enjoy the sand and ocean. Carolina Beach, North Carolina Ben was just weeks old when he first experienced the beach. When he was old enough, he spent time in the ocean and sand. He fell in love with the sounds, the excitement of each wave hitting his body and the grit of sand in his mouth.  For the past few years, Ryan and I have been taking Ben on his own vacatio ..read more

  My first personal essay was published in Our State this month. I talk about Ben's adventurous spirit in Unlimited Possibilities ..read more

  Ben met Doodle today. One of the staff at his day program brought him in. Ben loves dogs and these photos made my day.  ..read more