“They’re wrong.”
“That’s all there is to it.”
“Things like this just don’t happen to me.”
Once the denial dialog cleared I realized that this was,
indeed, my new life. From now on, I was
the mother of a child with a serious chronic illness. Devastating news, yes, but this wouldn’t be a
problem for me. I have always been so
good at picking myself up, brushing off the dust and moving on to the next big
adventure. I figured that this would
just be another minor adjustment to make. Heck, simply having kids is a major life change. We’d just have more changes to make than we’d
originally planned for.
While still in the hospital, my husband and I decided that
we’d never let this change who we were – or how our tiny baby lived her
life. Kidney Failure was just a part of
her life. As far as we were concerned,
we’d never let it define her life...or ours. We’d never be the people with “the miracle baby” or “our little angel.”
So I spent months, no years, trying to pretend like frequent
hospitalizations, daily lab draws, and an overflowing mound of medical supplies
were just no big deal. I would only
allow myself to fully break down in tears at the doctor’s office. To friends and family I was strong, funny and
casual. Or so I thought. Looking back on it, I must have been horribly
transparent. I spent so much of my life pursuing
the illusion of a cavalier attitude toward Kajsa’s illness that the obsession
with a lack of obsession eventually became my life.
And then one day I woke up, and realized what I’d allowed to
happen. I’d become one of the invisible
ones – the parents of chronically ill children. There are thousands of us. Otherwise
why would every major city have its own Children’s Hospital? But aside from special interest pieces on the 11:00 news, how often do we hear
about sick kids – or the families who love them? At the market I routinely find contact
information for moms who home school, breastfeed, cloth diaper or simply want
to get their children together on Thursdays.
I wondered how much support there actually is available for parents
of children with chronic illness. So off
I went to my local bookseller, in hopes of locating a book about Pediatric
Kidney Failure. Knowing that this was an
unlikely subject, I was willing to read about anything vaguely related to our
situation, and simply adapt it to her condition. But I found nothing. Well, not exactly nothing. I found books for parents of children with
special needs. But they were for autism,
ADHD, and even anorexia. The closest I
found was one lone book about parenting children with Down Syndrome. “How could this be” I wondered to
myself. Furthermore, what am I going to
do?
So I began visiting online chat rooms. I started a CaringBridge page and later moved
onto a blog. I began to find other
parents with whom I could relate. Our
one unifying factor seemed to be an original fear of being alone in uncharted
parental territory. Slowly, I realized
that there is nothing wrong with defining my relationship with Kajsa, in part,
by her illness. We all define our
motherhood by our children’s unique needs, be they organ failure, dyslexia or
even the need to get to cheerleading on time. And that’s just fine with me. I
do not need to deny who I am. To do so is
to dishonor not only my own needs, but those of my child.
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