In Bev Linder’s outstanding and insightful book Un-Special Needs, she brings attention to the “normal” needs our children with disabilities have. One of those needs is to have purpose in this life. Bev observes, “We all need to know that there is a reason, a purpose for taking up space in this world.” She goes on to share her conclusion after her vast experiences in the disability world, “Individuals who have difficult challenges of any sort are more, not less, equipped to make a dramatic and lasting impression on people and are therefore more, not less, qualified to impact this world in a positive way.”
For the last few months Melody’s life has been rich and full and definitely not lacking in purpose. Her latest thing is the impact she is having on the medical community one doctor at a time.
A few months ago we were at a celebration for the book Miracles We Have Seen: America’s Leading Physicians Share Stories They Can’t Forget. In that book Dr. Hyman shares part of Melody’s story. Dr. Tracy Price-Johnson, a professor at the medical school, spoke to us after the celebration. She wanted us to communicate with the medical students about Trisomy 18 and impart understanding from the parents’ perspective.
Recently she brought doctors in their residency to our home to meet Melody. It was a sweet time. The doctors were quite receptive to the message of Melody’s life. We discussed the label, “incompatible with life”. The sharp contrast between that phrase and Melody’s life did not go unnoticed by the residents.
Incidentally, while we were discussing this terminology Melody was standing (while I held her hands), doing her “ballet” moves, smiling, talking, and interacting with her siblings. One resident perceptively noted, “She gives back.”
We are thinking these doctors will likely never perceive Trisomy 18 the same again. Melody put a face to the Trisomy 18 world for them. “Incompatible with life” is a dehumanizing term, with horrific consequences. Now that these doctors have crossed paths with Melody, they will not likely adopt that terminology as a matter of fact.
We understand that Trisomy 18 children are more vulnerable, but they should not be dismissed before they are given a fighting chance.
There are simple things care providers can do to treat these children with dignity like using their name. That may sound basic, but that does not always happen with a child who has been labelled with a genetic condition.
We are thankful for Dr. Tracy Price-Johnson and her amazing work adding in the human element to the teaching of her students.
Melody has never spoken a word (with one exception – see below), but her life speaks volumes.
In April we traveled to Texas for a family camp. Melody traveled well. We had an incredible time of encouragement in the Lord and fellowship with some precious people.
In short order Melody made many friends. One evening there was a group of young ladies sitting in a circle on the floor of the main conference room. I looked over and, lo and behold, who was sitting in the center of the circle other than sweet little Melody.
The significance of Melody’s life did not escape the wonderful people we met in Texas. There were people who held Melody, talked to her, cuddled her, doted over her, and sang to her. Yes, that is right, several different individuals found out she likes music, and they bent down to her level and sang to her.
One dad held Melody for quite awhile around the campfire one evening. His wife told me that this was one of the highlights of his time there. It was sweet to fellowship with people from all over the country who so readily recognized the value of Melody’s life.
Melody is a love bug, and we are thankful for her sweet life.
John 10:10 “…I [Jesus] have come that they may have life, and that they may have it more abundantly.”