Monday, January 16, 2012

Paving The Way

I'm currently reading a fiction novel titled Jewel about a child born with Down syndrome in Mississippi in the mid 1900's.  In the novel, the mother is told that the child is a "Mongolian Idiot" and should be institutionalized.  She refuses.  As any mother can imagine, I wept during that part of the novel.

As the day honoring the birth of Martin Luther King Jr. comes to a close, I want to share again my favorite quote.  It is my favorite of all time, not just my favorite of Dr. King's. 

"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."

I know men and women who have truly lived this quote.  Who are they?

  •   They are moms and dads. 
  •   Their children are no longer children.
  •   Their children were born at a time when medicine did not understand that nature and nurture     should not be opposite of each other in a versus situation. 
  •    Their children were diagnosed and written off as failures. 
  •    They were told things that were impossible for any doctor to know: 
    • Your child will never walk. 
    • Your child will never talk. 
    • Your child will die before the age of 2, 5, 10. 
    • Put your child in an institution because you do not have the tools to care for him. 
  •     They said "no, you will not take my child from me." 
  •    They said "no, you do not know what he can accomplish."
  •    They took their child home, loved him, taught him, and if the worst happened and the child died young, they mourned and never forgot.    
  •    They became advocates.  They knew that a brighter future was possible.
  •    They paved the way for Trent, other children, other moms, and me.   
How can I ever repay something like that?  Will promising to carry the torch be enough?  Because I do promise that. 

Although this love letter goes out to all parents that have paved the way, I especially want to thank those moms in our local support group.  While you are cooing over our small ones and remembering when your son or daughter was that small, I am standing in awe of what you have accomplished.  I am measuring you by where you stood at your moments of controversy and challenge, and I am deciding that you are one of my heroes.   Thank you.

Saturday, January 14, 2012

My Generation's Holocaust

First entry of a new blog......Alrighty.  Hi, I'm Holly and I'm 33 years old.  I have three kids.  My youngest child has Trisomy 21, AKA Down syndrome.  Thanks for the contact lenses Trent; they are awesome!!

Introductions, check.  Let's get to the nitty gritty.

How frightful is the word "Holocaust?"  I've never used it outside of a historical context before today.   I certainly do not use it lightly.  I use it now because I sincerely believe that a holocaust is happening right under society's distracted nose.  Don't feel bad, I didn't notice it either until Trent came along.  

Is it too strong of a word?  How can something so severe and sickening happen in today's world?  Lack of public knowledge does not change the fact of its existence or the scale of it.  

"All that is necessary for the triumph of evil is that good men do nothing." -Edmund Burke

Start with statistics.  Approximately 90% of pregnancies with a prenatal diagnosis of Down syndrome are terminated.  9 out of 10 babies with a prenatal diagnosis are aborted. 

Is this the face of worthless?  Or "too hard to take care of?" I admit that his hair is a bit messy but messy is in! 

New prenatal tests make it possible to discover Down sydrome even faster with less false results.  Sounds like good science right?  Except abortion numbers will go up as a result.  Less children born with Down syndrome means the ones already here will begin to lose civil and human rights....the same rights that were mostly unheard of until recently.   Less children born with Ds means less research.  Less respect.  Less laws of protection.

Mosey on over the ocean to a few countries other than the United States. While you are out seeing the pretty sites, take a note of the places where money and education are scarce.  Do you see any child with Ds?  Or any special needs at all?  No, because children born with any physical defect or medical diagnosis are immediately put into orphanages.  The birth a shame to the family. 

Should I be ashamed of him?

There are "baby houses" (orphanages) that aren't too a relative sense. The children are fed, cleaned, and touched at least occasionally. While not ideal, it is not the worst.
The worst are hellish.  There are rooms for the hopeless children. 9 year olds that weigh 11 pounds. Starving to death. Teenagers that fit in baby walkers. The body will stop producing growth hormone when starvation is ongoing.  Children with hydrocephelus, a condition easy to treat in early stages, are left to die a painful death,  their skull literally breaking open. 

Years of not being touched make the children leery of any physical contact. For stimulation, they bite themselves or bang their head on the crib bars. If and when they are adopted, they can have extremely hard times adjusting to love and affection. 

Even the simple act of eating, which in the orphange consisted of a spoon of mush rammed into their mouth over and over or a fast flow bottle choking them and leading to aspiration, has to be slowly introduced and taught so that the child can learn to value and enjoy food.     

Then, if and when these child turn a certain age, usually around 5 or 6, they are transferred to an adult mental institution.  They often die not long after that....starvation, lack of attention, lack of movement, lack of health care.  Need to see it to believe it?

The horror stories are endless.  The list of countries like this are endless. The children's faces haunt my dreams.  And my nightmares. 

A girl before institutionalization and after:

These orphans have parents that want them and want them badly.  It is only money that prevents the adoption.

If Trent was away from me, starving to death, what amount wouldn't I pay to get him back? For any of my children?

If the knowledge that these children are an ocean away makes it easy for you to forget their plight, let me tell you about the mistreatment happening here in the United States.  Organ transplants can be denied to children with "mental retardation."  The reasons (excuses?) are varied....will the child as an adult know how to take medicines to maintain the organ?  What is their quality of life?  Why prolong a life if there is not quality?  What if the donor is a family member and therefore it is not a wait-listed organ?

Who judges quality of life?  Doctors? 

What do you think of Trent's quality of life?  His sister and brother obviously think much of him.


Does the fact that his IQ likely falls into the Mental Retardation range mean his life lacks quality?

I use the word "holocaust" because I am frightened.  I am frightened for my son and all like him, whether it be Down syndrome or some other "imperfection."  I am frightened that the wave of truth and justice has not gained enough speed to wash away this blatant disregard for human rights.  I use it because the Holocaust of history began in similar ways.  It was a slow, systematic purging.

"The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy."
     Martin Luther King Jr.

 You don't need to have a child with Down syndrome or other special needs to care.  You just need to understand that human rights are being violated.  This is not an American thing.  It is a human thing.

Ways to help:

Share information.  Share the websites. 

"... in spite of everything, I still believe that people are really good at heart. I simply can't build up my hopes on a foundation consisting of confusion, misery, and death. I see the world gradually being turned into a wilderness, I hear the ever approaching thunder, which will destroy us too, I can feel the sufferings of millions and yet, if I look up into the heavens, I think that it will all come right, that this cruelty too will end, and that peace and tranquility will return again." - Anne Frank