A Very Special New Fiction Wednesday

This week for New Fiction Wednesday, I want to share with you a special piece of fiction. As many of you know, I’m part of the Fragile X community. My son was born with this genetic disorder, which limits his development. While there are many things to worry about when someone you love so much has a disability, one of the blessings is the Fragile X community itself. There is immediate understanding of our experience, and nowhere else are our children more welcomed.

Another benefit is getting to meet other Fragile X moms, if not in person then via our Internet loop. One wonderful Fragile X mother recently posted a writing assignment she completed for her masters degree in Rehab Counseling. I was so moved by it I wanted to share it with you.

Assignment

You are presented with a metaphor. Think of a body of water as the path of life. Then consider a vessel on that body of water that has some disability. You are to describe how that vessel works its way through the water, starting where you desire but eventually reaching its goal. Be creative.

As completed by Nicole Ortiz:

In the Agape Archipelago every man and woman is given a vessel in which to travel when they reach a certain age. This is their rite of passage. They must take this from the far island in the east and drive it through to all the other islands to the far west. They may request a style, kind or color, but everyone gets what they receive and must take what is given.

When it was Michelle’s turn to get her boat, she was very excited. Many friends had gotten beautiful boats. Some were faster than others, streamlined and quick. Others had all the most advanced equipment and were the quickest to resolve any problems. These boats often skipped certain islands along the way through the Archipelago.

Michelle didn’t get one of these. Hers was not the fastest. Hers was not the most streamlined or one of the ones with the most up to date equipment. In fact, hers had outdated equipment. Hers had no navigation. Michelle’s boat was much slower than most of the other ones out there. Its engine sometimes stuttered and she’d have to take it in for overhauls regularly. She was given extra books for it and told there were some islands she would not be able to go to. University Island, they told her, was not a possibility. She would have to make frequent stops at Hospital Island and that meant going backward before going forward again. They would provide a tugboat for these trips, to assist when the engine sputtered and needed attention. If she was lucky, she’d make it to the golden island, but probably not passed ruby island. They told her there would be assistance and new guide book along the way and that if she couldn’t handle the boat, she could always take it to Institution Island to stay.

Michelle was devastated by this and it took her a long time before she left the island. She looked at her new boat with a pain in her chest she did not quite understand and watched her friends all leave the main island one by one in their bright and shiny boats. Before she could take off, she had to learn a new way to navigate the world, by the stars. She had to learn when to recognize an engine sputter and how to measure the right fluids to make sure there wasn’t a severe enough sputter to incapacitate the boat. Determined to prove them wrong, she set out on the boat.

It was a long, rough trip with several trips backwards to Hospital Island. Along the way she met many others, far more than she imagined with the same type of boats and learned new ways to navigate. She learned where the books were wrong and where they were right. She gained assistive technology in a compass and a means to communicate with the others who had boats like hers. Left behind by her friends, she gained new friends and new horizons. Family didn’t often bring their boats alongside, but some did. Tugboats would help her back to the Hospital Island, sometimes almost too late before the boat would begin to sink. Waits were terribly long at the Hospital Island.

As time went on new technology was given to her and canals were widened to allow those that could not pass through them before to do so. Assistive technology for navigation, beyond a simple compass, became available. Teen island came and went, as predicted University Island was not available to her.

A different world was, though. One full of tug boats and people to help the boat through. Some boats like hers were good at tasks that many others couldn’t be bothered with. These boats worked best in groups or with a tugboat along to aid them. This was a less glamorous and slower path than those who’d once been her closets and dearest. This path, however, was one able to stop and appreciate the fish in the water. On this path you could see the world change and sometimes be part of that change. Here, the sunsets and sunrises seemed more sweet and precious. It was a shorter, slower path than the others, but it had its own beauty within the tribulation: a sense of community in a world without love for those who are different.

Michelle’s boat never made it all the way to the west. She was changed, forever, by the experience and while she grieved never having a fast boat, the trip with this one was not one she would have ever given up.