Monday, November 22, 2010

Presentation can be EVERYTHING

There is good and bad in everyone, it is everywhere. What determines how these things run through your life is COMPLETELY dependent on your outlook on it. If you are positive and look for the good, and give the good, then you will have a good life full of good. If you are negative, and look for the bad, it will find you. The old saying "Misery loves company" is so very true. It is YOUR choice.

I read something today that I want to share with you, and I will after I've had my say first. Please remember that I did not write it, and in a black and white world it is not my belief.

But first, more of my ramblings. The first time that I talked to the doctors about Destiny after she was born they were listing off everything that was "wrong" with her, with quick, ridiculously simplified ways that we would have to deal with them. They finally got to the bottom of their list where extra digits were listed, polydactylies. She was born with an extra baby finger on both hands, that were attached to her fist baby finger by greatly varying degrees. As well as an extra baby toe on her right foot, attached to the other baby toe. In the same breath that they mentioned them they included "..but you'll just get them removed right? No big deal." We agreed while we stood there a little overwhelmed by everything that we had just been told, trying to figure it out, and me SUPER anxious to finally meet and hold my baby. Just seconds later with my baby finally in my arms, I had forgotten most of what they had said, there she was, my perfect angel despite all of her "deformities" and other things that were "wrong" with her. When ever someone would ask us about things that the doctors had told us about, we found ourselves giving the same speech that doctors had said to us. Once we thought about that, it didn't really fit with what we saw in our little girl, what she was or wasn't capable of, or what we wanted for her life. Like unnecessary surgery not being a big deal. Surgery is ALWAYS a big deal! Sometimes it IS needed, and at those times we dismiss the possible negatives and side effects, but if it is NOT needed don't you think that you should put a lot more thought into finding out if it is the right thing to do or not?

My main point is that the medical professions is in a habit of presenting situations to the patients in a fear tactic way in order to get the compliance to do what the individual thinks is the right thing to do. This is not giving you the best health care options, although I completely believe that the individual you are dealing with thinks that it is. Doctors should only be able to give you scientific facts, a clear examples, free from their opinions, so that you can make the right choice for you. The problem with medical facts (and this is so important so please read these statement over a second, third, or more time and remember it) is that if people do not agree to allow their doctors to include their information in the medical research, then other doctors do not know what has worked, not worked, etc for other people. Also if you have something happen that is very different then your info may not be included in the research because it is only one person and it is throwing the research off so much. Destiny had Cobblestone Lissencephaly. I know that she had this because Cobblestone Lissencephaly means that your brain has a cobble stoned appearance to it with areas that are completely smooth. This is something that you have or you don't have. She was not able to have this official diagnosis because to have cobblestone lissencephaly you need to have some sort of eye disease and/or muscular dystrophy. She did not have either of these things, as well as a few other things that went against the norm for for Liss. Also we were told that a child with Liss had NEVER lived past the age of 9 yrs old. Although Destiny did not make it to her 9th birthday there are MANY children all over the world with Liss who are MUCH older then 9. Unless you get included in research, others don't know about what is happening to you.

If you are EVER told that you, your child, or your unborn fetus has some sort of health issue, PLEASE get on the internet and look for other people living with these issues. They are the BEST resource to what it is like to live through this, how to live through this, what to expect, etc. You will learn things that you never knew. Like just how hard it actually is to contact the HIV virus, how children with Down Syndrome can grow up to live independent lives, and just how many people out there are living with Celiac Disease and how to make great food that your WHOLE family can eat and enjoy.

And now that this post has been another long and tiresome rambling about MY thoughts and opinions I will leave you with what I read today. As you read it and laugh, please take a moment to think about how you would feel if you didn't know better, and this news was presented to you in this way. Most of this SO VERY TRUE, that's why we laugh at it, but imagine that you didn't know anything but what this article is saying.

Since termination is such a common option for children with Down syndrome, why aren't typical developing children diagnosed like this?

How to give parents a pre-natal diagnosis:

I'm very sorry, I have the results of the genetic tests and they have confirmed our suspicions that your fetus is what we call ... Normal. Some people prefer the terms "Ordinarily Challenged" or "Normal Syndrome". The syndrome can be easily identified by a complete lack of any interesting genetic characteristics. I know this will come as a shock to you, but you should be aware of what this is likely to mean.

If your fetus manages to survive the rest of the pregnancy and the birth, which is becoming more common these days, he or she will face some daunting challenges. Children who suffer from normalcy are prone to health and psychological problems. It is almost certain that the growing child will suffer a seemingly endless stream of viruses. They will frequently damage themselves, and sometimes others, from their excessive energy.

Their relentless demands will put a strain on your existing family and, of course, your relationship with your partner will suffer, and possibly end in a painful and acrimonious separation. Any children you already have, even if they also suffer from normalcy, will be jealous of the newcomer and all their extra attention. Many siblings are liable to be psychologically scarred by the new arrival.

I need hardly mention the financial consequences, although disastrous, they will be nothing compared to the emotional turmoil your life will suffer.

After a while, you may be lucky and find they can be kind and loving young children. They may find some temporary happiness in things such as music, dancing, food or playing with toys.

But if they survive early childhood, a Normal child is almost certain to grow into a Normal adolescent. Your years of sacrifice will be thrown back in your face as they become disobedient, wild and reckless. Unable to find happiness and contentment, they will treat you with contempt until they manage to leave home. Even then the suffering will continue as they will often return to try and extract money. They will blame you for their own faults and leave you bitter and twisted.

They may well become criminals, over a quarter of Normals will have trouble with the law, many will spend time in jail. Many will have problems with alcohol or drug abuse. Normal marriages are often
unhappy and short and over half end in divorce.

Even if they become successful this is likely to be because of the often observed tendency of Normals towards excessive greed. The chances of them sharing their success with you are remote and they will tend to see you as an embarrassment.

Finally, Normal people are likely to die before their time. 23% will die of cancer, 33% of heart disease. Hundreds every year in this country alone are so distressed by their condition that they take their own life. I'm sorry to say that many will have had a lonely, painful and pointless existence.

I am afraid that Normal Syndrome is a genetic condition that affects every cell of the body, and so is impossible to cure.

Termination is an option.

Shall I book an appointment?

..... from a parent who received a diagnosis rather like this.

Bob Lincoln, author


1 comment:

  1. sarah my 4yr old when she was born the nurses quietly said to me we dont want to alarm you but your daughter appears to have a fused toe.well i was woozy from the c-section so i said oh well dont wrry well when i mentioned it to my hubby he unwrapped her later and looked and said she has an extra toe..we were fine with it but the drs were well omgoodness and i said its only an extra toe.She had it removed when she was 2..I still miss it everyday hubby wanted it done and i relaize now that she wears orthotics it was prob better but i still miss her "MERMAID TOE"..I also hear all the time that irks me when people say i dont care what the baby is as long as its if its not you arent going to love it?? 11 yrs ago i gave birth to a 9lb son who was sick right after delivery with everything under the sun he really challenged us as a family unit..hes fine now but the other babies that arent so lucky to have mommies to love them just becuase there them are the ones i feel the most love for..we need to love them as god created them and see the magic love can do.