and I have a nine-year-old daughter who was born with a collection of
in her brain. The fear we felt at the time of her diagnosis was beyond
words. I don't think I would have been able to cope without
the help of two friends whose children were also patients of my
neurosurgeon. The fact that they trusted the surgeon's abilities
was my lifeline to sanity. My daughter's pediatrician also gave
phone number to another parent in our situation and a comforting call
another mom eased some stress as well.
first and foremost, I believe that networking is a MUST at the
of the long and scary road parents must face when their child is
with an acute or chronic illness.
real important point to remember is that coping is an ongoing process
we parents master well at times, and fail miserably at during other
It is absolutely normal to fear losing a child, to feel anger and
and to mourn the loss of that healthy baby every parent hopes for.
greatest weakness is doubt. On the night before my child's
I doubt everything - our judgment in giving consent for the procedure,
the basis for the surgeon's decision, even God at times. I have
parents I've met along the way that doubt is common and it's greatest
is knowledge and trust. I have learned that avoiding asking even
the silliest question about my daughter's surgical procedure feeds my
but that it seems to diminish when I have the courage to ask away.
have also learned to write a list of questions that pop into my head
visits to the neurosurgeon and to offer my input regarding my child
examinations. A really great physician will honor the fact that
knows a child better than his or her parents do and listens to what
have to say. We have a really great physician. Trust is only
possible once parents feel informed and believe that they are a vital
of their child's treatment team.
another way of coping I entertain denial on occasion during the
quieter times. My denial (which still surfaces even after 8 years
of dealing with my daughter's shunt) usually rears its head after a
tiring run of stress, fear and anger over her health issues. I
learned to welcome denial as a time to regain energy and
I am careful, however, to put it to bed after too long and get back to
the reality of my child's life.
for taking the time to visit my page. Lynn