05 Jan A Parent’s Perspective by Tonya Merritt
Will has forced me to take a hard look at what I value and how I measure accomplishment. I am, by nature, a perfectionist. Will’s genetic enhancement makes him, by definition, imperfect. I valued hard work as the pathway to achievement. Will works hard and isn’t on the grid.
Will is measured and assessed all the time. At first, the numbers were really hard for me to take. He was actually at the zero percentile in gross motor development for a while. Zero. Gut punch. He’s below the 10th percentile in every area that they measure. At some point I had to give myself the talk that I had to stop caring about those numbers. They don’t mean anything that’s worth knowing.
We’ve often said that it would be easy to raise Will if we just lived in a bubble with him. He’s great. He works hard. He makes progress. He’s loving and fun to be around. What’s hard is putting him in the world. The world tells us that he is an error, defective, handicapped, disabled, retarded, delayed, or, when they are being nice, special. The world thinks that it is important for a group of us to gather every year to look at numbers that document Will’s deficiencies so that we can affirm that he still qualifies for services. The world thinks that he is a burden, a drain on resources, a vulnerable person to take advantage of, a piece of furniture instead of a person.
Will has made me throw away my measuring stick and instead look at him. And when I do that, I see a kid who is making his own path and who won’t let anything stand in his way.