Many weeks ago, a friend's post on Facebook spoke about her daughter's extended visit at the hospital. Her daughter has had many surgeries, has multiple special needs and requires serious medical care. Several friends and family sent well wishes in the comment section. One person wrote, "Your daughter is so lucky to have you." Of course this person was offering support to a friend, but my immediate reaction was, "No, you have it backwards. We are the lucky ones."
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.