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"People may think we can't do anything but actually we can do a lot," Jessica said, herself the holder of several jobs. I was lucky enough to sit in on some young adult sessions. There was a lot of dignity in the room before anyone donned best outfits. Everyone was preparing their contribution to the panel where they would share their strengths with families that had younger children. I was impressed by the number of jobs and degrees collectively held, and also with the concern, held by most participants, that they be seen for who they are, whether by doctors, family members, or strangers. All the young people said they appreciated Elizabeth's idea to spend social time with the medical students outside of a clinical setting. Each person at the table shared their own advice to parents of young children with Chromosome 18, but the sentiment expressed by one woman perhaps summed them all up. "Your children may bloom a little later but they will bloom," said Susan.
The same advice could be given to someone, like me or a medical student, who is trying to understand what living with a genetic condition is like: it may take some time, but, given some room, the understanding will grow. It is this allowance for mystery that so many parents and affected people have had to live in the flesh, and deeper: in the tiny clues strewn within their genes. Many thanks to the families who shared a moment of their uncharted journeys on video. We hope that each story will lead medical practitioners closer to where you all live, in the heart of a still unknown syndrome called Chromosome 18, and in your heart of hearts, where the tiny fetters of genetics cannot hold you. Where you are most free, and most human.
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