This past week we found out that we were accepted to receive services from the state through a special program. We have been on the waiting list for many years, and we are so thankful that Ben's name finally came to the top of the list. It comes at a crucial time when we are feeling that his safety may be compromised if he is left alone and unattended for any amount of time. Our stress levels were beginning to stay in the "red zone" more often than not. The relief I feel now is unbelievable - a weight has been lifted from my shoulders. My mom had a taste of what it is like with Ben this past week when she visited. I asked her to watch Ben while he was in the bathtub. She sat not four feet from him, playing a game of Trouble with Ben's younger brother, Logan. Without anyone hearing him, Ben got out of the tub and was next to Grandma before she even realized it. Yes, he is that quick, agile and quiet. At least she knows I am not making up the stories I share with her.
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with Rett Syndrome, a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.