As you know, I am a mother of special-needs children, children who have a whole complex of medical, emotional, physical, mental, and even social issues that most people (in particular, kids) shouldn't even have to face.
My children are many, and they have just about as many different medical issues that target others to stare, say things, or point at them.
Some are in wheelchairs and are unable to walk; and others walk, but they use crutches, canes, or walkers; and they wear leg braces. A couple of the boys are deaf or are hard of hearing, and they must wear hearing-aids in their ears. Two of the girls are blind and one uses a cane while the other uses a seeing-eye dog in helping them get around easier. One little girl will always be little, thanks to a common form of dwarfism; she will probably never be bigger than 3 1/2' tall, even as she gets to be an adult.
Some have breathing problems and must use oxygen, and some have asthma and allergies and have ended up in the hospital fighting for each and every breath. One boy is mentally handicapped and acts much younger than his nine years; and he really doesn't understand why he has problems learning. Another little boy is in a wheelchair, and he is slowly dying, and nothing can be done to prevent this from happening. He also has learning disabilities and other physical problems. One little girl, besides her breathing problems, also has pain in her joints, and she is often in severe pain. Another tiny boy was burned in a fire, and he is now severely facially disfigured; and people oftentimes point and stare at him.
I see the struggles each one of these beautiful children face each and every day; and as a mother, I often wish I could just take the pain and hurt away; but since I can't, I CAN be there for them when they are sick or hurting; and I CAN show them that I love each and every one of them, and it DOESN'T matter to me one iota if they can't walk/talk/see/hear. They are my children, and they deserve to be loved just like any other child.
I often fight with the insurance companies because the majority of them refuse to insure my children because "all have preexisting conditions", and "all are considered to be 'high risk'." Children like Johnny, Ronee', Rhiannon, or Jodie. That is fine, but in the meantime, WHO gets stuck paying for their medical bills? That's right..US, their parents.
And then we wonder why we hardly have any money left.
I'm NOT asking for a handout, mind you, but it WOULD be nice to have an extra bit of money to where we could go more places, or get more in the way of food for our hungry brood. We have to scrimp and save for every penny, and at times our accounts are near whimpering, they are so low.
I also fight with the HMO's because I am one who thinks WE should be the ones to choose our doctors, NOT the HMO's themselves. And half of the time we end up waiting for hours and hours in a crowded emergency room, anyway (unless one of the children--Ronee'? Johnny?--are having respiratory distress or are having a seizure; then they have top priority, and they are seen by a doctor, no questions asked!!)--and, at times, we have been sent home when it was our turn because there aren't enough doctors or nurses.
Fine. But in the meantime, what does a mother do when a child is screaming in pain due to a perforated eardrum, or a child has swallowed a roach or something toxic???? Take the child home and hope we can treat their problem ourselves when they really should be seen by medical personnel?
What if the child suddenly goes limp on us or stops breathing??
What do we do then?
This has happened to us before, more than once, and it angers me to no end when doctors or these HMOs tell us what to do when my husband and myself are capable of making decisions regarding the medical care of our children; we are allowed to choose our own doctors, and nobody--and I mean NOBODY--has the right to tell me or my husband what doctors our children can see!! Who do they think they are, and what gives them that right, to tell people which doctors, hospital, or care facility they can go to?
And as a parent, I am subjected to many stares, questions, or comments, or pointing by people each and every time they see us or our family. Some of the questions or comments aren't that nice, and it hurts me down deep inside to know that people can be so cruel and so heartless sometimes.
Or they may make comments about the race of some of my children..some of my children are Oriental, some are Hispanic or Native American Indian, some are African-Black, and some are, of course, Caucasian (white). These comments may mean well, but they always somehow end up sounding wrong or totally inappropriate, and in the end, someone always ends up getting their feelings hurt.
I try to teach my children about tolerance and equality, and I also teach them not to be ashamed of who they are or where they come from; and I also try to teach them to treat others with respect and dignity; and I try to teach them that hating others based on skin color, religious preference, or ethnicity is wrong and unnecessary. This is something I work with them each and every day.
I also try to teach them that the world is not ready to accept disabled people, and that they have to try to make a place for themselves and not give up the fight. I tell them that the world isn't fair a lot of the times, and I tell them what it is like.
I want them to be able to defend for themselves if someone is ugly or nasty to them, and I want them to be proud of who they are and what they hav already accomplished in their young lives.
I am not a perfect mother, and I will be among the first to admit that I often make mistakes.
All parents do.
And Bill, my husband, or I are no exceptions. We are only human, and we are only trying to be good parents to our children.
We want to stress to our children that we want them to be the best children they can possibly be and to try their best, and that there isn't anything wrong with failing.
It is okay to fail; it will be easier to try again the next time around.And if they fail, we aren't going to be disappointed in them, or tell them that they are worthless; they have already experienced more pain in their young lives than most people; why only add to that pain?? It would absolutely devastate them!!
This is why we try to be positive to our children, even things aren't going well for them.
If this can stick in the minds of our children, then that will mean we have succeeded in doing our job.
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Reviewed by Claywoman
8/1/2002
Wow! I'm speechless with this story! I can't believe the medical community...yes I can, for I ran into the same thing with my own mother. It was her wish never to go into a nursing home, and the doctor who fought me ever inch of the way! I won and my mother died at home in her own bed...
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