Sunday, October 31, 2010

Normal Syndrome Redux

I posted this a couple of years ago and something brought it to my mind again today so I figured I'd re-share.

I'll leave my thoughts at the beginning because they're still relevant, minus the "heading to the Buddy Walk" part.

Reading this again makes me a little sad. It's not that I want everyone to be stunned into silence and immediate worry instead of experiencing the more common joy when their child is born. It's that I wish that I, and others like me, didn't have to be.

I really wish that I had been strong enough in that moment to say to myself, "It's going to be ok. These are just statistics. She is our baby and we will love her and, starting in this very moment and until forever, we will enjoy the place she holds in our lives."

It's really hard to do that when people are screaming as if the worst possible thing has happened when you tell them the news. (By the way, it's not.)

Not me. I didn't scream. I was just crying.

I cried for a very long time.

I cried for the mental retardation and the hearing loss and the shortened life span and the cruelty of others and the fear and the heart defects and the short stature and the slurred speech and the teeth that would be delayed and out of order and the spine and bowel and vision issues.

Mind you, those were only possibilities. But they were delivered to and received by me as facts.

And that, to this day, still hurts.

Life is a crap shoot, y'all. You never know how it's going to play out. I'm learning now to wallow in the good times and try to be prepared for the not-so-good without letting that preparation consume me so much that I'm missing out on the aforementioned goodness wallowing.

It's a delicate balance, a hopefully graceful dance.

Thanks for reading, y'all.


We're off to the Buddy Walk shortly and I don't know what kind of day we're in for, so I'm posting something I didn't write. It's not meant to offend, just to help folks who have never had a child with special needs to understand what parents like us go through when their child is diagnosed. It's unfortunate that there's so much sadness, but you really have to fight to remain happy when the news is delivered like this:

Edited because I would be remiss not to add that "typical" or "typically developing" are terms much preferred over "normal"...I didn't want to miss a teachable moment here. Many parents don't like to hear that others don't think their child is "normal" or that something is "wrong" with them.

"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, buy 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."

By Anon.