Through the years of raising a child with severe disabilities, people blessed her, my wife, and me in many ways. One of the ways others blessed us was by asking, with genuine interest, what it was like on a day to day basis to take care of our daughter Nicole. Nicole now lives in a group home, but when she was home with us her care could be intense. Medical and adaptive equipment, medication schedules, doctor and therapist appointments, regular trips to emergency, hospitalizations, and surgeries became part of our new “normal” life.
Concerns, hopes, fears, joys jumbled around in our hearts as the days went by. Big questions loomed heavily sometimes. How do we appropriately grieve the loss of the child we dreamed of having as we come to love this child who has come into our lives? What does the future hold for her and for us? How will we ensure that Nicole’s siblings receive the attention and love they also need? How will we as parents juggle our schedules to fit Nicole’s needs? What would happen to her if suddenly neither of us were capable of caring for her anymore?
When someone asked about life with Nicole, and genuinely wanted an answer, Bev or I could talk on and on, because so few people ever asked us that question. As Nicole's parents we were hesitant to talk with others about her care because we feared that it might sound to others like we were complaining about the child God gave to us. But it was rare that anyone ever asked. Either most people didn’t want to know, or it just never occurred to them that our lives might be much different from theirs.
Whatever, the end result is distance from other people.
But when parents of children with disabilities can connect with fellow parents, even when the disabilities are very different from one another, they can share and understand in new and wonderful ways.
Sara and Ralph Pot are raising four children, two of whom have severe developmental delays. This past January, Sara (a.k.a. spot) suggested that parents of children with disabilities could get together on the Network for mutual support. Since then several others joined this discussion which has been viewed by others over 1100 times.
In her first post, spot said that she hoped for a “virtual community for CRC parents to connect and share their concerns, joys, questions with raising special needs children -including but not solely focused on church/worship matters. How do you make it through your day? How do you respond when someone tells you that God will not give you more than you can handle?”
We now have a place on the Network for Christian parents to do just that.
If you are a mom or dad of a child (including adult child) with disabilities, we now have a place for you to share your stories, comments, questions, concerns, frustrations, joys, triumphs, and delights. Please feel free to join in to share your story, ask a question, share a joy or concern, a meaningful Scripture passage. This forum is for you.