Saturday, December 1, 2012

Comparison and Contrast

 I’m a blog reader for two reasons.  

Reason one is to get simple distilled information about the Down syndrome, disability, and adoption communities.  

Reason two is because I find the person writing the blog interesting and I want to know more about their life.  

Two of my favorite blog writers are a good lesson in contrast.  

The first is a mother of 11 children. I do not know her religion exactly (definitely Christian in nature) but her faith draws me to her. It does not matter to me where she places her faith, simply that her faith is the most abundant I have ever seen. And she is a beautifully spiritual woman, almost otherworldly in her spirituality. I imagine how wonderful being her child must be, because she is so gentle and devoted to them.  Her greatest aspiration has always been to be a teaching mother of many.  I have read her writings long enough to know that she is very educated, complex, and extremely intuitive in areas of human nature and learning.  She can be found at

The second of my favorite mom blogger is a mother of 7 children. And a loud atheist. She provides a warning to her readers that she is a non-believer, curses on her blog, and doesn’t allow bullshit. Again, I imagine how wonderful being her child must be, not because she curses (I doubt she curses much in front of her children) but because while she is also gentle and devoted, her house is alive with questions, answers, honesty, and freedom. Openness without guilt. Questions and answers without reprimand.  Her children's maturity and empathy in matters of school and friendships prove she is doing things right.  She can be found at

I admire both of these women. I admire their personal truths. I admire their parenting skills.  Although I've called them a lesson in contrast, I can still see similarities in them.  Mostly love and devotion.  But also personal sacrifice.  Empathy. Sympathy.  And activism. The big difference of religion doesn't matter all that much in that respect.  All of those attributes exist within and without religion.  I think they probably even trump it.


Wednesday, October 3, 2012

Another Chapter

So the woman has a new psychiatrist and a new therapist.  

The psychiatrist adds a very small blue pill to her regimen.  The therapist gives her homework.

It has been a few weeks for the blue pills.  The woman can smile again.  She sleeps more peacefully and can control her moods.  
Touch no longer makes her skin crawl.  
She can concentrate on command.  
No longer does she cry without meaning to.
Once the fog truly clears, she wants to tell people that Major Depressive Disorder is not something to "shake off."  
She is not unhappy with her life.  
The nature of MDD is that she could have the greatest life ever, but unbalanced chemicals in her brain would make it all mean nothing. 
 A broken brain has no concept of worth.  
That is why she fears it all so much. 
Mostly, she wants to tell people how well she is.  
She has walked through a level of hell, and she feels strong to have walked back out.  She is proud that she avoided being a statistic.  

So will it stay this way?  Will the medicine work forever?  
Who knows.  She certainly doesn't know. 

 The only thing she knows for sure that each moment of swimming instead of drowning is a moment to be celebrated.  

Sunday, September 16, 2012

A Story of A Girl

This is the story of a girl with a diagnosis of Major Depressive Disorder.  She is actually a woman but when she is sick, she is just a scared little girl.

She has been on and off of medicine since she was 18 years old.  She should have been put on meds even earlier but alcohol, bad choices, and simple faking it sufficed before 18.  And society likely prevented it.   
Some meds have worked better than others, some worked for a long time then just stopped working.  Some meds required upping, upping, and upping until the amount was a balloon tapping the ceiling.   
The side effects blur with the disorder, and she can't always decide what is better.

The girl doesn’t like to admit when something has stopped working.  It is admitting that she will never be whole.  Forever broken, forever reaching for something not possible.  It is an exhausting thought.  Full of guilt.

Days or months can pass and she ignores signs.  The tears that fall randomly are allergies.  The twisty snake in her stomach is food poisoning. The damage done to her nails and cuticles are just an old habit and not a pleasurable, non-obvious way of hurting herself.  Anger is just a bad day.  A lack of sleep is just too much work, too much fun on FB, too much anything other than uncontrollable moods. Too much sleeping is just that she is tired.  

 She ignores the possibility that the disorder is making its final push of control.
She is ok one morning.  Relationships have suffered a bit, but she can proceed with the day.  Then something with someone else flips the switch of the dam.   
The disorder rushes in and is in control.

She knows she is hungry because she hasn’t eaten much.  She knows she wants something sweet because sweetness can sometimes produce a better mood, but when she gets to the parking lot and tries to push the button to order French Toast Sticks, her throat closes.  She is paranoid they will know the real thoughts floating around.  So she doesn’t order.  She watches cars drive by. 

Everything slows in her mind.  Every process in her body becomes heavy and cumbersome.   
Back before she was a mother, suicide was always an option.  
 But now, she has too much to live for, and she would never subject her kids to the loss of their mother.   

But the thought is like an insistent flirt of a person.  How would you?  Access to tools of suicide?  Change of mind at the last moment?   
She attempts to wave those thoughts away but they are heavy and slow, like waving a hand through syrup and looking for a change in movement.   

She heaves a door open to other thoughts, but they too are heavy.  They flow toward the front of her mind in a slow ticker fashion.  She sees a thought she might like but it moves so slowly along the ticker, it becomes unconnected and incorrect before she can fully grasp it.   
She wants it back but can't find it and that frightens her.   
She senses that she is near the edge of something and that all it will take is one tiny push to cross a line; the line when a person no longer knows their thoughts are not ok.   
It is the line a person crosses into psychosis.  
 She has crossed it once before.   
To tell the memory of crossing that line is a funny story, but the memory of terror produces more terror.

So she starts looking for phone numbers.  She sends a text to her therapist.  She says I can’t and won’t talk right now.  But I need to know what to do.  I need to know what happens if I go to the emergency room and tell them I’m losing my mind.  I’m not suicidal but I can’t promise you that the line isn’t nearby and that if I cross the line, I will forget all the reasons I don’t want to die. 
 It takes her an unreasonable amount of time to type that.  The thoughts are so slow and her hands are so heavy. 
 She waits.  And waits. 

She becomes disconnected and looks at herself objectively.  How can all these cars be going somewhere like nothing is wrong?  How does their world function when her world doesn’t?  Can’t they sense that she has become unmoored and is floating in a place not at all similar to the place they inhabit?  Doesn’t anyone see the little girl with a war in her brain sitting in a vehicle at a fast food joint?  How long has she been there?  (The clock on the dash says over an hour.)  But she is an adult woman with sunglasses on.  They don’t see that she moves in slow motion.  Or that behind the glasses, tears just run from her eyes like full cups of water being poured. 

No return text.  
 After an internal debate and slow motion of searching, dialing, and breathing, she attempts the number at the behavioral hospital.  The receptionist barely understands her through the sobs, but the receptionist has been trained.  

1. Get the person on the line with a counselor immediately.   

The counselor sounds like a young man.  He asks the girl if she is suicidal.  She says “no but I could be.”  She actually giggles at the statement because it doesn't convey what she meant to say.  Then she sobs harder because she knows inappropriate laughter is not good.  He asks her name, she refuses to answer.   
Just tell me if I will see a psychiatrist and if they will let me out when I am better, she says.  The counselor tries to avoid that answer.  He wants to know Better from what? What is wrong?  Why don't you just come here?  

She hangs up because she knows she could never make the decision to drive there anyway.  She will never find the energy to leave this parking space.  She thinks about crawling into the back seat and going to sleep.

But new thoughts come.  What would her family think?  Demon possessed is one thought.  Literally, that a demon has taken up residence inside of her and is doing this too her.  She thinks about praying and tries it, but nothing happens.  She knows too much about genetics, family history, chemicals in the brain, and mental illness.  The sickness is not, nor has ever been, a demon.

 What would her friends think?  Would they be scared to be her friend if she spent the night in a hospital created for "people like her?"  Her children?  Her husband?  Her job?  Her future?  Would even one night ruin her chances of a career or choosing a child from another country later?  She senses that she is being overly paranoid but she no longer trusts her perception of truth. 

A text comes and it isn’t her therapist.  It is someone that loves her very much.  He thinks she is somewhere else.  She doesn’t tell him that she has been parked for 2 hours. That the war has been going on for 2 hours.  She tells him she does not want to talk but will text.  She tells him that she has been asked if she is suicidal, that she is not but that she is not OK either.  She tells him that she doesn't know where the line is or how close she is to it.  She tells him she doesn't want to cross it.  His texts calm her.  She is being as honest as she can.  She tells him that she worries she will lose her children because she is sick.  Even if people have come so far to accept those with mental illness, it doesn’t mean she will be accepted.  This is a huge failure on her.  He wants health for her at any cost.  
Just go to the hospital if it will mean health. 

She doesn’t respond.  She puts her phone away.  
 She finds that although her eyes continue to cry, she can speak.  She orders food.  She pays for the food.  She eats a little bit.  She stops thinking for several minutes.  

The wind flutters leaves on a tree.  She stops choosing to eat or not choosing to eat.  The body becomes automatic.  Hand in bag, fingers grab food, arm moves food to mouth, mouth chews, swallow, repeat.   

It is a form of hypnosis she learned years ago.  It provides protection when it is needed the most.   

The thoughts return to normal speed.  The heaviness in movement lightens.  The wave of syrupy thoughts thin out.   

When she comes out of the hypnosis, she doesn’t feel so much of a little girl, but she is so very sleepy.

Although it has been at least a month since she has driven a stick shift, she mistakenly thinks her vehicle is one.  She tries to put the vehicle in reverse with her left foot pushing a clutch.  She is momentarily confused and worries she will not be able to drive.  
(Later, she will assume that the confusion was from her past.  During the years of the most severe episodes, she owned a stick shift.  The body has a memory of its own.) 

She makes it home and walks straight to the bedroom, only stopping to remove her shoes.  She no longer weeps but the tears still flow with no help or avoidance from her.  She falls asleep with heavy blankets to ease the coldness in her bones.   
Four hours later, she wakes to find her eyes almost swollen shut and crusty with salt.  She feels as though she has been in a car accident, sore and weak. The tears still flow even when she makes an effort to stop them so she returns to bed a few hours later.   

The morning reveals improvements, both in emotional and physical ailments for the woman.  And Monday will be an important day for making phone calls. Maybe it is time for a new medicine.  Maybe a new treatment.  
She won't give up hope. 

September 9-15th was Suicide Prevention Week. 

Sunday, March 25, 2012

A Dream Lacking

I was walking among rows and rows of cribs. 

 Extremely skinny children with Down syndrome were in those cribs. 

I was on a class trip and I kept telling my classmates that they didn't understand what they were seeing.

 I was the only one that understood.

I was able to hold a few children.  A few smiled at me.  I worked so hard for those smiles.  I told the caregivers what the children needed to thrive and prove societal opinions wrong.

When I woke, I tried to remember as least one face.  I wanted it to be a sign that my future child is waiting for me.  That God has already picked a child for me.

But I couldn't remember a single face.

Sunday, March 4, 2012

Those Moments

-He climbs in our bed between 3:30 and 5:30 am every morning.  He snuggles so close, as if he could be absorbed back into my belly.  His hand touches my cheek and his fingers flutter.  His hand moves from my cheek to my hair.  He sucks his thumb, sighs, and goes back to sleep.  His breath in my face...I don't care what it smells like.  Pure, powerful love.

-Feeding him bits of food that he cannot feed himself.  He kisses my cheek over and over.  Sticky, wet kisses.  It makes me wonder if he is more finely tuned into the collective consciousness.  As though he knows his brothers and sisters with Down syndrome across the ocean are not fed from a hand that loves them.  He savors what I give him and knows it is just one of the ways I show my love. 

-New friends visit our house.  He immediately climbs onto their lap.  He hugs them, pats their face, kisses their cheek.  I see the realization in their eyes.  They are slowly "getting" the secret.  

-At therapy, when he is tired of working, he tries to cuddle with the therapist.  Some fall for it.  One doesn't.  She says, "I will love on you after you finish this."  He finishes and she loves on him.

-At therapy, another child cries.  His sweet heart breaks with empathy.  He cries.  He wants to hug the other child, but first the other child has to stop crying.  Because he can't stop crying otherwise. 

-His brother and sister are doing whatever.  With no warning, he walks up and hugs them.  Then he walks away. 

-He is incredibly playful and social.  Anything fun.  Anything with other people. 

-He collects ball caps.  His grandmother's coworker gave him from Winn Dixie because he was always trying to remove hers.  His uncle gave him the one he was wearing last time he visited.  We have over ten ball caps hanging on a rack in the living room.

-His small hand holds mine.  He likes for our fingers to alternate instead of the usual way a child holds a parent's hand.  It is awkward because his fingers are so much smaller but that is what he likes and I obey.

-His sensory needs force him to lick things.  He licks me arms, my hands, my cheeks.  It is slightly odd but he smiles after he does it.  Perhaps it is a form of affection and not just sensory. 

-Music moves him. Any beat, any genre. He keeps time remarkably well. He will begin dancing and I have to stop my busy mind just to find the music.
What else am I not hearing?
-We are in a store. He signs "dog" or "bird" or "baby". 
Where's the dog sweetie? 
It takes me forever to find it. It is a minuscule image of a dog on a package or a shirt. 
That's right! It is a dog. 
What else am I not seeing?

-In that same store, a stranger looks at him. Probably wonders. Does he or doesn't he? Did she know while she was pregnant? Is she sad to have a child with Down syndrome? Then he waves, smiles, and blows a kiss. The stranger smiles, laughs, and tells me how precious he is. 
Oh, trust me I know. 
I hope the stranger concludes that I'm not sad.
Never sad.   It is a secret that I want to share.

-The bus drops him off at 1:00. He is ecstatic to see me, but first he has to hug the bus driver.  Then he practically leaps off of the steps into my arms. How was your day sunshine? He smiles, squeezes my face. I have to go back to work sunshine. A big kiss and hug.  I'm out the door but he is waving through the glass.

-Four hours later, I return. You would think I had been gone for days. I can't go to the restroom, put my stuff on the counter, or simply say "Hi." I must stop, pick him up, and love on him. 
He is angry otherwise. 
Nothing else matters.
How often am I missing what is truly important?  How many sights, sounds, moments?

He is teaching me.

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