Re: pregnancy

Valerie Brew-Parrish (brew-parrish(AT)juno.com)
Sun, 5 Oct 1997 19:53:04 -0500

Carol,
Doctors are arrogant but you are so right. They should have contacted
(Sister Kinney) someone to help you. They were negligent. I still meet
respiratory doctors that don't know polio survivors who were in the iron
lung should NOT be given oxygen. You are fortunate that you can get by
without using it 24 hrs. a day. I met a few people at the polio
conferences who were given oxygen by uninformed doctors and they have to
carry the tanks with them every where they go. Oxygen weakens the muscles
we still have working until they just shut off. Couldn't you get by with
using regular room air on the vent? I can see why you have unresolved
issues that bother you. I was also told I would not bond with my baby
because I couldn;t cradle her in my arms. My husband told the doctor she
was an idiot! She was too. I cradled Tara in my legs, diapered her with
my feet, and ingeniously took care of all her needs. Tara says I am her
best friend. Bonding indeed! No daughter was ever more loved. You are
100% right when you say we all need advocates when we are hospitalized.
Rick is well trained. When he was hospitalized, I stayed in the room with
him. I WON'T stay in a hosp. without him. The polio docs understand this
arrangement. My friend, Margaret Pfrommer, a polio quad and vent-user,
knew in the '70's how crucial it was for us to have advocates. She once
overheard a doc say it would be a blessing if a mutual friend (polio
survivor) would die. She just about ran him down and explained it would
not be a blessing. Augie was vital to the disability community, testified
in front of congress on accessibility, etc. Carol, it's o.k. to be angry.
In fact, it's healthy. I have come to believe the AB's or non-disabled
people can't fully understand what we have gone through. My friend, and
school chum, Carol Gill, polio survivor & vent-user, and nationally known
psychologist says that disabled people have their own culture. I agree
with her. We need to bond together as a community. Then, maybe our wounds
will heal. Talk to you later Carol!
Val