I missed your early, descriptive posts to the vent list, but have read
several of the follow up ones.
I also am the mother of a ventilator dependent child. If I am correct
there is only one other family on this list that has a ventilator dependent
child. You are the third. As a parent my/our perspective IS different
than many of the other list members! When our child's physical condition
changed we (child, parents, extended family, friends) all experienced
loses....loses of our dreams, hopes, plans. We all had to make major
sacrifices and accommodations. The impact is felt physically, emotionally
and financially. Our children, however, lost the most, sacrificed the
most. They are also the most resiliant!
The feelings that you express are normal. Don't think for a moment that you
can hide those feelings from Mandy. You can't! It is very important that
you are truthful with Mandy as she has got to be confused by the "mixed
messages or signals" that she is receiving. It is also important that you
deal with your feelings and move forward for both your sake and Mandy's.
You can not change the past. What happened, happened. Eventually you will
have to come to terms with what happened and ACCEPT the facts. You can
then truly have a significant, positive impact on the future.
Kristen, our daughter, has been ventilator dependent for 5 years now (she
will be 8 in November). Normal for her is having two ventilators, nurses
or family available to assist her, monitors and oxygen. Normal for her is
also attending school daily, playing with siblings and friends, dreaming
about her future. She loves life and lives each day to it's grandest
potential. Kristen knows that she is loved and wanted. She will thrive
and, Lord willing, survive. She has a strong will and the determinitation
to succeed. Kristen has a smile and personality that warm the coldest
soul.
When Kristen speaks of her life as a "grown up" HER plans include marriage,
children and a home of her own, a professional career, an iron lung for
sleep and a Hayek with it's cuirass for the day. My daughter will do just
fine.
I'm curious (and might have missed this in an earlier post)...do you have
plans to bring Mandy home? From your description it does sound like Mandy
is receiving adequate care at VPF (not sure about the pressure spot issue
though). A majority of the ventilator dependent children in our region are
cared for at home with private duty nursing support.
As a parent I have to take care of myself. If I don't I can't effectively
do all that I must do on behalf of Kristen and my other children each day.
For now it is my responsibility to advocate on her behalf, to lessen the
barriers, research the medical options, and make informed decisions. It is
also my responsibility to help Kristen work through her feelings and the
issues that confront her with each stage of growth and development.
Creativity and imagination have served us well in the invention and/or
innovation of things/ideas to make all of our lives easier and happier.
I believe that you need support and assistance in working through the
feelings that you have. I do know of several other groups that might be
able to help in this regard. If you are interested please post me
privately.
Joanne Kocourek
The University of Chicago
jskocour(AT)midway.uchicago.edu