When it rains, it pours at our house. In the midst of the scramble for a wheelchair (the sweet tale in my previous post does not portray the heartache of finding a chair for Ben), we developed yet another issue: On the Sunday after Christmas, it rained miserably. The roof over Ben's room (and Logan and Sean's) is a shed roof, meaning it has a very gradual, almost flat roof. We have known for about four years that replacement was imminent. About two years ago, we made a temporary fix. In my grand plan, when the accessible bathroom was built, this roof would be replaced. Over the past couple of months, I noticed bubbling on Ben's wall when it rained and in the weeks before Christmas, I saw damage on the ceiling from water. It did not look good. That same Sunday, the sun came out and it turned out to be a pretty day. I was thankful that the rain had not made the situation in Ben's room worse. Boy was I wrong. About 5 o'clock, I checked on Ben, and water was pouring
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.