Published on The Center for the Visually Impaired's Sightseeing Blog, May 2014. Original link: http://www.cviga.org/sightseeing/safe_sight_visually_impaired_child/
I don't often write about my daughter's visual impairment and, when I
do, I always find the subject somewhat difficult to address. This is not
because the topic is associated with anything negative but because my
child's visual impairment is so far from what defines her or my
relationship with her. My primary identity is not “the mother of a
visually impaired child” any more than my daughter’s is “a visually
impaired child.” I am Christina James, mother to Jessica James: a smart,
outgoing, energetic, slightly-out-of-the-ordinary girl that just
happens to have a visual impairment. Still, she does have a visual
impairment and it has shaped our lives from the get-go...in the best of
all possible ways:
When Jessica was born, she didn't open her eyes until we left the
bright lights of the hospital three days later. Having no experience
with newborn humans but a lot of experience with newborn puppies, I
simply assumed that humans were more like puppies than I thought and
that this was all normal. Once, when telling this story, I was told that
I should somehow be embarrassed of this incorrect assumption I had
made. I'm not. I wear my early motherhood ignorance like a badge of
honor.
Why? When you have a visually-impaired child (or any
child for that matter), every single one of us is a beginner and not
only is it ok that we are but it is important to be so. Our children’s
vision conditions are each unique as is our parenting experience so
there's no way we can know what it is we're getting into. We do not
experience motherhood in the same ways as each other or anyone else so
we cannot rely solely on the advice of others.
What we all have
in common, though, is the fact that our children change us. Our children
are born with unique needs and differences that teach us new ways of
seeing the world and ourselves. Jessica, for instance, has taught me the
importance of seeing the world through all of my senses, not just my
sight. She has taught me to be aware of my own ignorance and to use that
blank slate as fuel to research and learn about her condition...to
realize how important it is to say, “I don't know what you're going
through but I'm ready to observe and listen and try to understand.” Most
importantly, she has taught me that perfection is overrated and there
is a special beauty in the process of figuring out what it is you can't
see or you don't know with the clues you have available to you.
My experience of motherhood may have been “different” due to Jessica's
vision differences but I doubt there is any experience of motherhood
that could be considered “normal” and I wouldn't change any of it for
the world. Sure, I didn't get to experience breastfeeding because she
couldn't see to latch. No, I didn't get to enjoy eye contact until she
got her first glasses at 2 years old. Instead, I got to hold my child
closer and delight in her joy at being able to see me when I held my
forehead up to hers. I watched her learn to lift her head, crawl, and
run faster than most children in her excited attempt to get close enough
to see the fuzzy images that were just a little bit too far away. As
she has gotten older, I've gotten to watch her grow into a supremely
practical and self-confident young lady who understands the importance
of struggle as only one who has had to surmount obstacles can know.
From her, I have learned a completely different way of seeing
motherhood and the world than I had before she came into my life...not
because she was visually-impaired but because she taught me the most
important lesson of motherhood: We are all beginners here.
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