For the past three years, Ben has been on the bus with the same brother and sister. Since they get on before Ben and after he gets off, I see them twice a day and have become friendly with them. About two years ago, we had them over for a playdate. Their Dad came too. Ryan and I learned about their tough circumstances. In the short time we spent with this family, it became obvious that the Dad worked hard to make their situation work. Although I tried many times to get the kids together again, it never worked out. Over a year later, on Halloween, the Dad stopped by our house. To ask for a relatively small amount of money. I gave it to him and asked that instead of repaying us, he bring the kids over for a playdate. He agreed and they came the next week. Then six months later, the Dad stopped by to borrow a tool for a job. We gave it to him. Today he came by and left us a note explaining that he was going out of town. I guess he was letting us know he still had the tool ...
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.