Wrongful Birth / Wrongful Life lawsuits

   Throughout Emily's life, I was confronted by well-meaning folks who blamed Satan on her having Down Syndrome.  Since her death,  well-meaning folks have proclaimed that now she has a perfect body, that she has been healed of the Down Syndrome.  I say: Poppycock!  I don't believe that Emily was broken when she was born and I don't believe that she is fixed now that she has died. 
   King James 2000 Bible (©2003)
Before I formed you in the womb I knew you; and before you came forth out of the womb I sanctified you, and I ordained you a prophet unto the nations.

   I read this article this morning  and grieved over the evil in this world.    But as dismayed as I am when I hear reports on the news, they just serve to remind me that we ARE in the last days, and it's only going to get worse. 
   King James 2000 Bible (©2003)
And the brother shall deliver up the brother to death, and the father the child: and the children shall rise up against their parents, and cause them to be put to death.
   King James 2000 Bible (©2003)
Thus says the LORD; A voice was heard in Ramah, lamentation, and bitter weeping; Rachel weeping for her children refused to be comforted for her children, because they were not.

Wrongful Birth Lawsuits Wrongly Tell Kids: Wish You Were Dead

by Denise J. Hunnell, M.D. | Washington, DC | LifeNews.com | 12/27/11 5:11 PM

Imagine gazing at your child and coldly declaring, “You should never have been born.” Yet parents are doing exactly that in courts around the world as they bring “wrongful life” or “wrongful birth” lawsuits against doctors and fertility clinics.
These very sad cases are variations on the classic “wrongful death” medical malpractice suit. The twist is that the plaintiffs are dissatisfied because the patient — in this case a child — lived instead of died. Usually these children suffer from a serious disability or genetic disease. In a “wrongful birth” suit the parents allege that if they had been given a prenatal diagnosis of the child’s condition they would have aborted their child. They seek compensation for the care of their child and punitive damages for having to live with a disabled child.
“Wrongful life” cases are filed on behalf of the child, claiming that non-existence is preferable to living in a diseased state. In 1998, Amos Shapira argued in the Journal of Medical Ethics: ”… it would be both feasible and desirable to endorse ‘wrongful life’ compensation actions. The genetic counsellor owed a duty of due professional care to the impaired newborn who now claims that but for the counsellor’s negligence, he or she would not have been born at all. The plaintiff’s defective life (where healthy life was never an option) constitutes a compensable injury.”
Professor Shapira of Tel Aviv University wrote this over a decade ago. Since then, such lawsuits on behalf of children with genetic defects have become commonplace in Israel. The Oct. 26, 2011, issue of NewScientist magazine reports that the rising trend of these “wrongful birth” cases has prompted an investigation by the Israeli government. Israel, like much of the Middle East, India, and North Africa has a high rate of consanguineous marriages, thus increasing the incidence of genetic diseases. Carmel Shalev, a human rights lawyer and bioethicist at Israel’s University of Haifa, asserts the Israeli culture is geared to do prenatal testing and abort children with genetic defects. She states in New Scientist:
“There is an entire system fuelled by money and the quest for the perfect baby. Everyone buys in to it — parents, doctors and labs. Parents want healthy babies, doctors encourage them to get tested, and some genetic tests are marketed too early.”
In other countries “wrongful birth” lawsuits focus more on the hardships of the parents than the children. A 2009 case in England sought £1.5 million as a down payment on the care of Rupert, a 5-year-boy who was born with congenital heart defects, a cleft palate, a vertebral abnormality and a single kidney. Rupert is also wheelchair bound, requires mechanical ventilation via a tracheotomy and has a feeding tube. The lawyers for his family argued that because these abnormalities were not detected on the pre-natal ultrasound, his mother was never offered the opportunity to abort Rupert. She was burdened with his care and therefore deserved compensation.
A 2003 lawsuit sought damages because Down syndrome was not diagnosed prenatally. The Vancouver mother complained that having a child with a mental disability “totally disrupted our plans.” She was awarded $10,000 in damages for her suffering. In a similarly disturbing case, an Australian lesbian couple attempted to sue an IVF clinic because the birth mother became pregnant with twins when she only wanted one child. Their suit claimed the couple was “overwhelmed” with two children. The birth mother was beside herself because she had to buy an expensive stroller for twins and suffered nausea during her pregnancy. While this lawsuit was rejected by the Australian courts, the thinking that prompted such a claim is part and parcel of this increasingly prevalent view of parenting.
Throughout the world, children are dehumanized and treated as accessories in the lives of adults. With contraception, children are conceived when it is convenient for their parents. Abortion allows for “defective” children to be destroyed so that their parents do not have to deal with sickness and disabilities. In fact, a Danish newspaper headline announced earlier this year that a medical breakthrough would cure Down syndrome. In actuality, the proclamation was simply saying that prenatal testing and the subsequent abortion of unborn children affected by Down syndrome would be so thorough as to eliminate all live births of such children.
The advent of assisted reproductive technologies has allowed selecting a child to become even more precise. Embryos are screened before they are implanted. Those not of the desired gender or those with less than optimal genetics are discarded. In 2009 British doctors enthusiastically announced the birth of the first baby girl who had been screened as an embryo to ensure she did not carry the BRCA1 gene for breast cancer. In doing so, they implicitly denounced the lives of all women who do carry the BRCA1 gene. To these physicians, it would have been better had these women never been born.
When having a baby becomes an exercise in consumerism, it is not surprising that parents want some sort of money-back guarantee. When a purchased product does not meet the specifications that were ordered, we send it back and ask for a refund. “Wrongful birth” lawsuits are compensation for a “defective” purchase. “Wrongful life” lawsuits claim that disabled children are manufacturing mistakes. They should never have happened in the first place. Such thinking strips children of their human dignity and debases their parents.
Secular culture judges children by their usefulness to their parents. Such conditional love breeds distrust and insecurity. This socially destructive view must be countered with a culture of life that accepts the vocational nature of parenthood. Parents are called by God to be stewards of the specific human life given to them. Every child, no matter the state of his health, is conceived in the image of God. Every child also comes with his own set of challenges. There is no denying that some of these challenges are daunting. However, if God calls us to a task He will not abandon us. His grace will see us through if we have faith enough to trust.
LifeNews Note: Denise Hunnell, MD, is a Fellow of HLI America, an educational initiative of Human Life International. She writes for HLI America’s Truth and Charity Forum. This article originally appeared on Zenit.org.

ghosts of Christmas past

   At one time I fancied myself a fairly good photographer, but now I leave that to the professionals. I take pictures, (lots of pictures), to preserve my memories.  I look at pictures to conjure up those memories.  This weekend I spent time remembering the ghosts of Christmas past.

1st Santa, 1st Christmas

sweet temptation

 

notice that the tree is in the playpen, Emily still managed to eat a light

                                                             never afraid

 

 

                                       Emily & Seth, what a hoot, that pair

                                                

                           

                                                   Anne & Emily

The year she cut her own hair - Emily & Santa at school 

                                                    

        

 at the Annual Mileur Christas auction, Emily won this bid



    Memories are fickle things. They slide in and out of my consciousness, much like I image a ghost would enter and exit a room; sometimes invited, sometimes not; sometimes fleeting, sometimes lingering.  Often times the memories bring a smile, other times a tear and sometimes both. Sometimes they're as welcome as an old friend, and sometimes I'm haunted by the could'ves, would'ves, and should'ves. But they're always welcome because, whether the memories are pleasant or not, they're better than nothing.
   This will be the 6th Christmas without Emily, the 2nd without Mom and the first since Pop died. Although last year I put up decorations, this year I haven't and probably won't. I mourn the time- honored traditions that are lost. My heart is fragile again and mostly, I feel numb.  

    But as I write, I realize that I am not the only person who juggles the past with the present.  Each of us have memories that play in our head while we live in the present. 

   The Word says in Ecc 3:4:  There is a time to cry and a time to laugh. A time to grieve and a time to dance.   This message sets me free!  It allows me to remember and grieve the past, and yet, it gives me permission to celebrate the present.  This is the Christmas to make new traditions and to make new memories.

.

 

Imagination & experts

When Emily was very little, I was told by one of the "experts" that kids with DS have little imagination and tend to sit listlessly unless stimulated. hmmmmm,   I guess Emily sure showed her.
That girl had a vivid imagination! She talked non-stop to her imaginary friends. We buckled them in seat belts, set their plates at the table, and waited for them to finish their turns. She was their teacher, their parents, their boss.

Each of these blocks had a kid face on one side.  These were her audience, her students, her friends.

Emily's favorite toy was a stick, any stick. I've seen a stick transform into a microphone, a baton, a crutch, a sword, a horse, and a musical instrument.   Placed on her shoulder, like a hobo, her stick held her bags. Oh and talking about bags.... Emily was a bag lady. She loved anything with a handle and regularly packed everything out of her closet.                                                                             

 

making noise (otherwise known as music)

                                                 

  She also loved to dress up.  To keep her out of my closet, I went to the local goodwill and bought an assortment of dress up clothes.   No imagination?

                                             

                                                        
 If the experts were right, then Emily was an exception.  But what I know now, they weren't and Emily wasn't.  I have met many kids with disabilities and have found that each has their own strengths and abilities that make them unique.  Exactly like every other kid.

   If I had to do it over again, I'd listen less to the experts and more to myself, less to the professionals and more to Emily.  I would spend less time chasing the elusive dream and desire for normalacy  and spend more time enjoying, appreciating the gift of her reality.

                           IMPAIRED
   She entered my life a broken treasure;
   My dream for a child exchanged for the nightmare of a diagnosis.
   The doctor's words cursed her life
   Sentenced her to be less than whole.

   But the 'who she is' becomes larger than the 'what I fear',
   And the verdict fades 'til I forget,
   I find it's we who are impaired.
   For lack of sight, we miss her gift.
                                 Annemarieke, 2003

                  

  

The Christmas play

  From age 3 to 15 years old,  Emily went to school at the School for the Hearing Impaired in Marion.  The School services kids 3years old through 8th grade who are communication impaired.  Emily (and every other student in that school) participated in the annual Christmas play.
Bless the teachers, the aids, the secretary, the therapists, everyone who made this event possible for the kids and for their families!

   Having a child with a disability robs a parent of experiences that are otherwise taken for granted by parents of typical kids.  The Christmas play allowed me some of those experiences.  12 of those experiences, to be exact.   12 years I came to the school and watched Emily perform on that stage.  12 times watched her search the audience until she found me, and 12 times I heard her scream in delight "That's my mom!"   I wonder how many moms of typical kids have had that experience?
       One of these days, when we meet in heaven, I'll hear those words again.



Emily is the last kid on the right, in plaid - age 4



Emily's picture was in an article in the paper



Emily, 2nd from the right, just above the red cap



1st on the left, dressed as a present



2nd from the right, signing "stars in the sky"

                                                  far right - she found me in the audience!

In yellow.

 

  
  

  

Thanksgiving past

   Ray and I remodeled an old house once.... and made it look older. We gutted rooms, tore out ceilings, spent our professional drywall budget on new wiring and learned how to drywall ourselves, but when we were done, it looked great!   
   Then we sold it, moved into a finished house and have had no home projects since!

An electrician's nightmare

 

Mud on

Mud off

  




Emily helps

Living room completed!

Thanksgiving, 2006

Our Family 2006
Emily, Seth, Anne, Ray, Christina and Noah, Kelly

              Little did we know that this would be our last Thanksgiving together. Lessons in life:  Treasure every moment.  Don't put off  till tomorrow what you can do today.  Make a memory.  Hold precious those you love.  Because tomorrow is not guaranteed. 



                                                   

Balance

   A couple of weeks ago, I passed a rose bush.  It still had the remnants of a rose on it.  A jolt ran through me as I realized that summer was gone.  Sure, I'd done the summer things: the garden, the mowing, the sweating. But I hadn't stopped to smell the roses.  I'd  'busied' through another season.
  That was the great thing about Emily.  She saw the world through simple eyes.  My priorities are upside down in comparison to hers.  The "here and now" was what was important to Emily.  I spend my days getting things ready for the "what's next" and the "just in case" and I miss the present. I rationalize that someone's got to take care of business.
    Emily put the balance in my life. How I miss that girl.

Under a parachute with new friends

at a Girl Scout activity.

At the mall where Emily's class  signed songs

in American Sign Language. (Her primary language)

                                           

Halloween and Ed Johnson

   When I was a kid,  we  did the Halloween costumes, trick-or-treat thing.  But when I became a parent,  I just didn't see the sense in it.  I know alot of people have a hang up about Halloween and  philosphizing and religion-izing.  That's not it.  We just didn't do it.  But even though we didn't participate, we always had treats for others who came knocking on our door.
    Emily loved, I mean loved, to give gifts.  One time, my mom gave her a small stuffed animal and Emily immediately said "Give to Cayley."  It hurt my mom's feelings, that Emily would think so little of the gift that she would give it away, but the reality was that Emily thought so much of Cayley, that she saw the gift as a way to bless to her friend.
   So in that sense, Halloween was one of her favorite days.  Emily had so much fun giving out candy to the kids who came to the house. 
   One year, our neighbor, Ed, brought his kids over for trick-or-treating and asked, not accusingly, but genuinely curiously, why Emily didn't go out on Halloween.  I tried to explain, but really didn't have a solid answer.  That was that, or so I thought.
   Next year, Ed and his kids came over on Halloween and Emily passed out the candy, as excited as ever to be able to give.  Ed, (and it makes me cry even now as I write, because he was so kind to remember and to think about her)   brought over a bag of candy to give to Emily.
   She was so excited to receive that candy.  She danced around and acted like she'd never, ever, been given a gift of anything. She gave Ed a big hug.   But the crazy thing about Em, when the next batch of kids came to the door, she promptly gave that bag of candy away.  Somehow, she could see that the real gift isn't in HAVING a thing, the real gift is in the act of GIVING a thing  And she gave out of a heart of love.
  

Pappa Coonie's turtle story

     It all started in the summer of 2002.  Murl (AKA Pappa Coonie)  & Louise live on a edge of a pond.  In the spring, they were blessed with newly hatched ducklings.  But, one by one, turtles would pull the ducklings under the water to drown and eat them.  Murl was itching to get himself a turtle.
   Now, Louise had a ceramic turtle in her rock garden , and for a laugh, Ray put that turtle, as a decoy, on a log at the edge of the pond.
   When Murl got home and saw that turtle in the distance, he pulled out his rifle and shot it, not once, but twice, straight through the chest, exiting through the tail.  He was SO excited that he'd gotten a turtle.

 

 So started the legend of 'Precious, the turtle'.  I'll share just a few highlights of that turtle's life.

   'Precious, the turtle' has been auctioned off to the highest bidder at many of the family Christmas auctions, and has lived, for the following year, at each of the sibling's homes.  He was kidnapped & held for ransom, enduring 17 long days of captivity before being return unharmed. (the FBI got curious about those e-mails)  He was an honored guest at Murl & Louise's 50th anniversary celebration.  He found love with Myrtle, the Turtle on New Year's eve 2004.  Sadly, that relationship ended on Valentines day, 2005 with an introduction to a break-dancing turtle named Lucianda Maria Antoinette Delasantos. I could go on and on.
   Turtle inuendos still pop up anywhere, any time the Mileur's get together. 

    Another Mileur family tradition is the 'Annual Lessor Scaup 4th of July, Boat Regatta and Birthday celebration"!  Everybody creates a boat, and everybody gets an award!  The Legend of Precious the Turtle and the Annual Boat Regatta  became entwined several times.  Just look.

2005 -  Emily's boat  - "Please don't shoot me"

Award -  "Coonie's favorite"

 

2008 - our grandson Noah's boat - "The moving target"

Award - "Best kid's boat"

 

2008 - Monique's boat - "Turtles on Strike"

Award - Pappa Coonie's favorite"

 

2009 - Deb's boat " Grand Coonie Isle Turtle Farm"

Award - "Pappa Coonie's favorite"

 

   None of this would be funny if Murl had not been able to laugh at himself.  If it had been my father who had been in that original situation, who had mistakenly shot a ceramic turtle, the story would have had a very different ending.  It would not have been funny at all.  I wonder, what makes one person able to laugh during a situation, and another person angry?

 

    

 

Horse back riding and life skills

   What girl doesn't like horses?  Emily was no different in that aspect.  She loved horses, and had no fear, even when I thought she should have a little fear.  I'd heard that horseback riding had been shown to improve balance, muscle tone, and self confidence in kids with disabilities, I set out to find "equine therapy".  At the time, I worked with Terri Walker, who told me that her mother,  Sandy Crutcher, boarded horses and had hired a trainer to give private lessons.  "No," Sandy told me, "We don't do therapy, we just teach kids how to ride."  Neither she or I knew how it would go, but we agreed to take it one week, one lesson, at a time.  Thursday afternoon was Emily's day and she learned the days of the week on a calendar by waiting for Thursday to come around. 
  For the life of me, I can't remember the name of the trainer. I think it was Mitzi.  Anyway, she was perfect for Emily.  Stong handed enough to keep Emily reined in when she needed it and wise enough to let Emily go when it was safe to let her be on her own.  And the horse, he was huge but he had a patient and gentle spirit.  This wasn't just riding.  Em learned how to feed, groom and clean up after the horse.  She learned that there were responsibilities that came with the fun.  After a couple of years at Crutcher's Corner, Mitzi moved on and the lessons came to an end.

   
   It was several years later that we happened upon another opportunity for horse riding lessons for Emily.  Dave owned several horses and was willing for Emily to come ride once a week.  BlackJack was ideal for Emily.  I was more comfortble with his size and Emily took to him like an old friend.
   One day, Em decided she wanted to do more than just walk around the corral.  She kicked BlackJack in the ribs and hollored "Go."   And BlackJack did what he was told.  He took off, and Emily fell off.   Dave about had a heart attack, and started to go to Emily, but I stopped him. We watched as Emily picked herself up, dusted herself off, then ran after BlackJack.   "You get back here!"  She caught him, climbed up on the fence and climbed back in the saddle.  She was so proud of herself when she walked  BlackJack back around to where we were standing.   Emily thought she was just having fun.  But in that instance she was learning life skills of  'actions have consequences', 'problem solving', and 'independance'. 

BlackJack and Emily

                      
   Later, I learned about an equine therapy center.  I signed Emily up.  But both Emily and I left the session frustrated and disappointed.  We didn't go back.  This was not riding like Em was used to, this was being led around.  I'm sure there's a place for this type of therapy, but I am so glad that I didn't find this first when I was searching for horse-riding therapy.

                                        
   I feel such gratitude to both Mitzi and Dave for being willing to see past the disabilities of Down Syndrome and for being willing to see the abilities of Emily.  They gave her an opportunity to grow.  Instead of doing for her, they taught her to do for herself. This was no free ride. They expected her to do for herself.  And she rose to that expectation.
 
   That's a hard lesson for parents of kids with disabilities.  It's hard even for parents of typical kids.  We want to help our kids, but in doing too much for them, we actually disable them further.   I didn't think this up, but I like the quote:

                           "As a parent, it's not your job to do for your child.
                             It's your job to teach your child to do for himself."

Emily & Oma

  When Emily was born, my Mom was there.  When she was 18 months old, Emily had surgery for a diaphragmatic hernia and spent 15 days at Children's hospital, 12 of those day on a ventilator.  My Mom stayed there with me while I stayed with Emily.  All through Em's life, my Mom was there for me.  She knew first hand about raising a child with a disability.  She undersood what I was feeling.
  Mom was diagnosed with Breast cancer in  1996.  She had a mastectomy, radiation and chemo and surprised the Dr's by living in remission for 15 years. When she died, it wasn't from cancer.  I believe God let her stay here to help me raise Emily. 

Yes, that's a pair of Emily's pants on Mom's head. 

They were playing dress up.

 

Having a picnic at the zoo.

 

Mother's day luncheon,

 

A Hundred years from now,

It will not matter what my bank account was

the sort of house I lived in,

or the kind of car I drove.

 But the world may be different

because I was important

in the life of a child.

 

My mom made a difference in my life, and in Emily's life, and in this world!

 

 

 

 

 

Driving the school bus driver

During this month of October - National Down Syndrome Awareness Month - I want to tell stories about living with Emily, to tell of how she made a difference in this world. She was a stone thrown in a pond, and the ripples have not disappeared. In this world - she was a small stone. In MY world, she was a crator!

  Except for a few months when there was a substitute driver,  Mary Mausey drove bus # 6.  Still does.  Emily rode that bus for 9 1/2 years. An hour to school and an hour back.  Some days, she saw Emily more than I did.  I can't praise Mary enough. She has the patience of Job!
   But this story is not about Mary, it's about the substitute. 
   A little back information about Emily.  Never underestimate a person with a disability.  To compensate for inabilities, unexpected talents are honed.  She couldn't read a paragraph in a book, but Emily was talented in reading people.  She loved without judgment, and blessed strangers that I looked away from in my social correctness.   In her inability to speak understandably, her behavrs were her way to communicate, and when she was bored, look out.  The bus ride was boring.
   Discipline: now, that's a well debated word among parents.  What's discipline? What's punishment? What's abuse?   In their of fear of being seen as abusive,  many parents have given up even good discipline and kids are left without boundries.  Anyway...   With Emily, I found that having a paddle around was a good motivator to change her behavior.  I rarely had to use that paddle, I just had to remind her that I would.
  Back to the substitute bus driver.  After a brief  honeymoon of good behavior for the new driver, Emily got  bored.  She talked loud, wiggled in her seat, bothered the kids in front of, behind and beside her.  The substitute complained to me, wrote out a ticket.  I told her about the paddle trick, and gave her one (the kind that a ball is attached to it with an elastic string).  The plan was that when Emily misbehaved, she would show it to Emily and remind her that Mommy would spank her when she got home.
  A week later, the driver complained again, Emily's behavior was worse, unacceptable.   I decided to remind Emily's bottom what the paddle felt like.  I asked the substitute to give me the paddle.  I would paddle her right where the  misbehavior was occurring.  She wouldn't give me the paddle.  I asked her again, and reluctantly, she gave it to me.  I was shocked, the thing was beat up, part was broken off.  "What happened to this paddle?" 
  The substitute told me that when Emily would misbehave, she would take out the paddle, show it to Emily, tell her that Mommy would spank her, and she would use the paddle on the door-open lever.
   By the look of the paddle, she must have given the door-open lever quite the spankings.
   Imagine Emily, bored on a one hour bus drive home, full of energy, after sitting in a classroom all day.  "What can I do to make that bus driver go looney?"  A behavior rewarded will repeat itself.  Apparently, for Emily, watching that bus driver was reward enough to outweigh any discipline that would follow.

Emily Visits the Shower

This is my favorite (I'll probably say that again) funny story about Emily.

   One afternoon, I decided to go visit a friend, and Emily went with me. We had been there about 30 min when Emily told me needed to go to the bathroom, which in itself was nothing new because  Emily was with bathrooms like a dog with fire hydrants, gotta visit  every one. Being old enough to go by herself, she went by herself.  10 minutes later, she still hadn't come back. We went to check on her.  She was in their shower, her clothes tossed in a pile on the floor.   I asked her "What are you doing?"  She looked at me like I was the silly one, wasn't it obvious? "she signed back "Shower."
  well, DUH

If I knew then what I know now

   I have the dubious honor of being the executor of my parents' estate.  That's the fancy title for the person who is legally responsible for sorting out the leftovers of the lives of my parents. Gratefully, I'm not alone in this.  My siblings have also been shouldering a great deal of the weight of the cleanup of the house and property.  The five of us were unified in the caring for my parents during their last years, and have remained so since their death.  But, since neither of my parents made a Will, the court became involved to assure that everthing is handled fairly.  Hence the title - executor of the estate.
   Both my parents were readers and writers.  Both saved files and files of clipped newspaper articles on vast varieties of topics.  Both were prolific writers of  'letters to the editor' in which they expressed their opinions.  Mom wrote a daily journal - years and years worth. Pop saved obituaries.  Both kept every card and every letter they received
   This past year, I've spent countless hours sorting through the mountains of paper in their house.  I've tossed the majority of it, but still have a pile that begs attentive reading.
   I'm surprised to find that as I read, I don't feel the emotional baggage of being their daughter.  I read with curiosity, and discover aspects of my parents lives that I hadn't known before. I put myself in their shoes, and even though I disagree with some of the decisions they made and some of the paths that they chose for their family, I realize that they did the best that they knew and the best that they could at that time.

    I read a letter to my mom, from her brother as he responded to her previous letter to him.  She had written:  "If I had known then what I know now, or if I had been who I am now, I might have .... I have repented of that, and accept my part of the present effect of it in our lives."

   My uncle wrote so wisely: "Since you did not  know then what you know now and you were not then what you are now, I see no need to repent or lie awake over all the might-have-beens that could-not-have-been anyway."

  The vocabulary of REGRET is: I should have... I shouldn't have... If only....  I wish I had.... I wish I hadn't....  The subsequence of regret is BONDAGE.  It ties you up emotionally, prevents you from from being happy.   STOP IT.  If you need to, apologize for it. If you broke it, fix it.  Then don't ever do it again.  Just don't sit around in regret.  What a wast of time.

 Then, remind yourself  "Don't Should on yourself and don't let anyone else Should on you!"
  
 
  

Chose LIFE!

   It's been 5 years since Emily died.  Recently, a young mother who had to say goodbye to her newborn, asked me how I survived, how did I make it through.

      Initially, there was so much help and so much support,  it felt like I was in a bad dream that I would soon wake from.  People told me "You're so strong"and "You're doing so well".   I thought that about myself, too, and was smug in how well I was coping.  Counseling? No way, I was fine. Until about 3 months after the funeral.  One morning, I woke up and the numbness had worn off.  I thought I would die.  The feelings were overwhelming.  But by then, my friends were back to their own lives, and although they would have been willing to help, to listen, I had always been the care-taker, so I continued in that role; I comforted the people who came to comfort me. 

   There were two of me.  The real me sank alone into my own little pity party, after all, I was Emily's mother, and no one else could feel the way I did. I even excluded my family.  "Grief" swallowed me up.   The other me was a faker.   I put on the happy face and went to work, to church, to the grocery store.  I acted like I was fine. The other me kept "Grief" in a box, the lid tightly closed.  The problem, though, was "Grief". He wouldn't stay in the box.   One day, I'd cope well, then, the next day, I'd be in the pits again.  I felt like I was bouncing.   

    Then I got angry.  Like PMS and hypoglycemia and no sleep for 2 days kind of angry. That kind of irritability that simmered under the surface and erupted when I least wanted it to. There's nothing right in the world when a woman gets that kind of angry.  I remember getting pissed at a lady in the grocery store when she took 5 seconds too long to decide on what kind of green beans she wanted - "just pick a can and get out of my way" (I didn't say that outloud, but I sure wanted to).   

   Finally, I went to grief group.  The first day, I did nothing but cry. But that was the beginning.  At group, I felt free to open that box and come face to face with "Grief".  I learned some important lessons. 

• Guilt and Regret feel very much the same, but are two very different things. Regret says "I wish I had..." or "I wish I hadn't..."   Guilt implies the need for punishment, and if no one else punishes you, you will punish yourself.   You will beome self destructive - over eat, over drink, over drug, not allow yourself to be happy again....   Both Guilt and Regret  require self forgiveness.  (This lesson set me free.) 
• Grief is part of who I am. He will always be there to affect every part of my life.  But the choice is mine about how much  influence he has.  
• It’s possible to get stuck in grief, for grief to become my identity.   

    I turned my anger on "Grief".  He had stolen my daughter, and he was threatening to steal my life as well.   I turned to the Word.    I call heaven and earth as witness this day against you, that I have set before you life and death, blessing and cursing: therefore choose life, that both you and your descendants may live. Deuteronomy 30:19. 

   I chose Life. And everyday I choose Life. 
  
   Oh, it's still not easy. "Grief" comes as expected at Christmas, at Emily's birthday and her death day and each spring when the daffodils bloom.  Sometimes I get ambushed by "Grief" when I hear a certain song on the radio, or when her best friend sends a message on FB saying "I love Emily".  Some days, I wake up to find "Grief" sitting on my chest, making it difficult to breathe, much less to get out of bed and function.  But as time goes by, it gets easier.  I've learned to open the box myself when it's safe, instead of letting the pressure build to explode at inappropriate times.  I refuse to wear the signs that identify me as a griever.  I am a survivor and I behave that way.
   I hang on the belief that this life is only a stepping stone to my eternal life. Every day that I open my eyes on this earth, is just one day closer to when I cross over and be with Emily again. 
  

Hans' Death

   On Dec 11, 1963 my mom wrote this letter to  the Department of Foster Care:
      "We have taken a whole week to consider and reconsider the case and cannot decide otherwise under our present circumstances.  When we, at first, agreed to accept your offer (for foster care for ans) is seemed a heaven sent solution to a problem. We were living in a small house that Martin wanted to rebuild.  A small house gets even smaller in the wintertime when the children have to stay inside most of the time, and we have four children besides Hans, two older than him and two younger.  the youngest being playpen size.  Hans hates the noise of hammering and sawing, probably because it hurts his head and we expected him to cry all the time Martin was working at the house.
   I write you this so you will understand why we said 'yes' then.  Under the circmstances we could not afford to say 'no', because it would hurt Hans and we felt that God was making a way for him and us to make his life bearable.  We have prayed much about him and we have  always felt that God would either heal him or take him away by the time we had learned the lesson He would teach us through Hans.  It was hard for me to accept that the State would relieve us from a cross, but still it was not impossible and as I said, we could not afford to say 'no' at that time.
   We filled out the application for the Lincoln State School and then sat down and waitied.  In the meantime, however,  we had to move out of our little house becuse its roof had become a fire hazard.  Twice a fire started by a spark out of the chimney on the tinder dry wooden shingles.  It did not do any damage at all, but we could not have a fire in the stove anymore and we moved out.  Now we are renting a house that has plenty room for all of us, including Hans, while Martin is doing the rebuilding he has planned on our own house without bothering Hans with the noise.
   All these things happened so fast and we felt so strongly the protection and guidance of God's hand that we can only thankfully say that God has given His solution to Hans' particular problem and to a few other problems, too.  As I said, we have taken a whole week to consider this matter and we realize that this is for us a chance which many not come back in years, and that Hans may become a problem again and again, but we feel that we don't have a right to worry about that.  Our belief that we do not need the State to take care for our family has once more been established, even though at first we were ready to give in, in face of the difficulties we saw ahead."

       
   Then comes the letter to Dr Schwartz on Dec 31. 1963
   "We hearby let you know that our son Hans died still quite unexpectedly last week, Thursday, December 26, round 1 o'clock in the afternoon.  So the head circumference we sent you December 11th has ha s been the last one.  We hope they have been of service to you."

   Hans died at age 4 years, and 26 days.  I was 15 months old when Hans was born and a little more than 5 years old when he died. I have no direct recollections of my life at that time. What I know about Hans is from the stories told by Mom and by these letters I've found since she's died. But I believe that his life, and my parents' response to the challenge set before them, influenced me and prepared me to be Emily's mother.

Jeremiah 1:5 "Before I formed you in the womb I knew you." I believe that Hans and Emily were not accidents, that God forms each one of us, and knows each one of us individually.

Jeremiah 29:11  For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.   I believe that Hans and Emily (and each one of us) have a purpose to fulfill here, and when that's done, we're gone.

I believe that this life on this earth is but a blink in our existence, that there is very much more to our eternity. And I believe that Hans and Emily are not in my past, but in my future.


  

Han's life

   In Nov. of 1960, when Hans was 11 months old, Mom wrote this letter to the Crippled Children's.

   "The hole in his back is completely overgrown and there is no longer risk for infection.  He has been growing like an average baby, he eats quite normally for his age, though he does not try to chew; he likes to watch his brother and sister at play, laughs at them, but does not play himself.  Though he moves his hands, he does not have any feeling in them and he does not use them . His head is not too big, but rather heavy, it grows very slowly, about 1 cm a month.  He looks very healthy, but we don't know how long he will stay with us.  We hope it won't be too long though, for life cannot be much fun like that, even not for a baby"
   "We would like to hear from you whether Crippled Children or any other institution would like to have his body after death.  We don't attach any value to corpses and we would like it, if it could be used for some kind of medical research.  Please let us know, too, the address of the association who takes in and gives out corneas of eyes.  As I said, Johannes looks healthy and he may be with us for some more years, but we want to know what to do in case something happens to him"
                        
   Amazing that Hans had an open wound with direct access to the brain, he had no infection a 11 months.  Amazing that in 1960, our parents were proactive to think about medical research and organ donation as a way to have Hans' life be significant.
   The DSCC (division of Services for Crippled Children) replied:

    "If in the future, the care of your son becomes too much for you, I would suggest that you go to the State's Attorney and file papers to have the child admitted to the Lincoln State School.  There is a long waiting list at the present time..."

   In the 1960's, it was common for children with diabilities to live in facilities, rather than with their families.  Caroline, child #4 was born Feb, '61. My parents sent this letter in March of 1961.

   "It might be a good idea to try to get him on the waiting list for Lincoln State School, although we don't want to bring him here or anywhere else as long as we can take care of him ourselves, unless an institution would be better for him."

   and in Oct of 1961:

   "We appreciate your interest in Hans, and I should write you more often how he is coming along.  But my family keeps me so busy and there is really no change at all since our last visit in April."   

                        
   5th child, Wilma was born in March of 1963.  Mom wrote this letter to DSCC in Sept '63:

   "It's almost two years ago since you last heard from us.  There has been no change in Hans' general condition since you have seen us in April, 1961.  He still spends his days in the same stroller, fingering the same baby-gymset a little with his right hand, laughing at some sounds and crying at others.  He has some sores on his head, of which I have given up hope to ever see them healed. They apparently drain enough to keep his head from growing.  I keep them clean and covered with bandages, boiled in boric acid and that helps them get smaller, but then they get swollen and red from pressure from within and the new skin comes off and we can start all over again.  It does not seem to hurt him much though, except that he does not want to sleep on his left side.  His sores on the right side are worse, but he does not care and sleeps good, but he stays awake for hours on his left side till I give in and there is peace for the rest of the night.  His head measures 71 cm now and has not grown since last January."
   Mom regularly sent Hans' head measurements to Dr Henry G Schwartz, Neuro-surgeon at Barnes Hospital in St. Louis.
   Jan '62 - 65 cm
   Oct' 62 - 70 cm
   Feb '63 - 71 cm
 
   In Oct '63, my parents considered an option to place Hans in foster care.  To do so, Hans had to be on the waiting list at the Lincoln State School. This description was included in that application.

  "Johannes is paralyzed from waist down, he has had some use of his left hand, but does not use it anymore; he plays some with his right hand with a cradle-gym hanging over his stroller in which he spends his days.  He does not walk, does not talk, does not chew, taking only liquid or mashed foods.  His head started growing right after birth and measures now 71 cm in circumference, it has not grown since last January.  He knows his parents and brothers and sisters and likes to watch them, but it is impossible to say how much or little he understands."

   To be continued - tomorrow.
  

Hans birth

    I recently came across a file folder with letters written by ,and to, my mother.  It was simply labeled "HANS".  Until this reading, I had not known the details of his life.  I'm sure that I still do not fully grasp the faith and strength of my parents during that time.  
 
    My Mother gave birth to 5 children within the span of 6 years, 1 month and 9 days.  I was child number two and my brother Hans was next in line.  
   My parents had immigrated from Holland in Dec, 1956.  My oldest brother, Martin, was born in a hospital in Michigan on Valentine's day in 1957.  The experience was very different from what was the norm in Holland, and my parents found it unacceptable.  They wanted a family-centered, home birth. When it was time for me to be born, Dr. Lucas (who had delivered Martin), was persuaded by Mrs. Lucas to came to the house to attend my birth. 
   Our family moved from Michigan to Herrin, IL in Oct, 1958.  We lived with the Verkamman's, a Dutch family with whom my parents had immigrated.  When Mom became pregnant again, each Dr. in town was approached and each refused to come for a home birth.  On Nov 30th, 1959,  Hans was born at home with only my father and Nellie Verkamman in attendance.  My two sisters, also born at home, followed in close succession, the youngest on March 23, 1963.
   But this story is about Hans.  At the delivery, Tante Nellie saw that there was a open area on the small of his back. The Dr. was called and Hans was taken, via the Johnson's funeral home hearse (which also served as ambulance) to St. Louis Children's hospital.  He was sent home Dec 12th and my parents were told Hans had Spina Bifida and Hydrocephalus, and that he was "a hopeless case." 


            
  

   I remember Mom saying that she was glad that the Dr's had made the decisions for Hans' outcome, since they had, she and Pop didn't have to.
   Here's a portion of a letter written by Mom on Jan 7, 1960, to the "Division of Services for Crippled Children" who had paid the hospital bill.  (note that my Mom spoke no English just 4 years earlier)
   You might be interested in how the boy is doing and we are glad to report that he is in as good a shape as can be, considering the circumstance.  The wound in his back is steadily growing smaller but still draining a little, while his head expands not so far.  Most amazing however are the leg movements he displays and that at an increasing rate and strength. How this is possible we don't know yet.  We always believed in miracles and that is precisely what it would be if our son would live and recover in spite of the odds.
   Meanwhile we are very, very thankful for your part in the miracle and we will do what we can in every way to promote Chrippled Children.  Please call on us if there is something we can do to help you out, other than with regular donations. 
   Please find $5.00 enclosed and again thank you, thank you very much.
       I try to put myself in my Mom's shoes.  three babies in 2 1/2 years; one baby with a disability; her own family across the ocean, their only communication through snail mail. I can only imagine the isolation she must have felt, to live a strange land, to be exposed to a foreign culture, and to learn a new language. No washer, no dryer, no Pampers, (just think about the laundry!),no diswasher, no TV.   She was dependant on her husband, good friends and on her faith in God!!
   Another statement Mom had made about Hans and miracles, that on hindsight, it probably was a good thing that Hans had not been miraculously healed of his condition. Could they have given ALL the glory to God, or would that have been a seed of vanity/pride planted in their spirits?  

   To be continued in the next post.

Prenatal Genocide

   I have to apologize for not posting for such a long time. I could come up with excuses about being busy. But the truth is, I've been struggling to write this post and it's been hard.   And because it was hard, I've put it off, found other things to do instead of facing this very personal issue. But here it is, with all its bumps and warts.

   During pregnancy, a genetic screening is routinely offered and is done at 16-18 weeks gestation. Down Syndrome is only one of the several congenital anomalies that can be detected before birth. If the blood test result is positive, an amniocentesis will confirm or rule out the diagnosis.  Out of 10,000 pregnancies, 4-5 children will have down syndrome, and   91-93% of those mothers and fathers will choose to have an elective termination (AKA - a therapeutic termination, AKA - an abortion) rather than give birth to and raise a child with a disability.
    While politicians and pro-choice groups talk, and talk and talk about women's rights, about when human life begins, and about quality of life, a prenatal massacre is going on, a genocide of a race of people who have a well defined set of characteristics and behaviors.
     When a women signs the consent prior to the termination, when she refuses to accept the challenge set before her, does she really know what she's missing?
     Does she know that:
-disability is not just a diagnosis - that it's just a matter of time for every single one of us?
-each "normal" person is also differently abled, and differently disabled?
-we are more alike than different?
-what doesn't kill her, will make her strong?
-having a baby with a disability will be the best 'worst thing' that has ever happened to her?
-she will count herself blessed to have been chosen to be this child's mother?
-she is not alone, there are many supports available?
-God never promised her a rose garden, He just promised to always be there?
-that the blessings will outweigh the cursings?

   Tomorrow, we celebrate the 4th of July, Independence day, the birthday of a nation which was conceived with these words:
       "We hold these truths to be self-evident, that all men are created equal,
         that they are endowed by their Creator with certain unalienable Rights,
         that among these are Life, Liberty and the pursuit of Happiness."

Remember the pre-born children who have been and who are still being sacrificed on the alters of selfishness, fear, and ignorance. Let it enrage you. Let it grieve you.

     For more information, check out these sites
         opposed to genocide of pre-born children with DS

         rick-santorum-disabled-children-have-so-much-to-teach-us                      
         ethnic_cleansing_in_the_womb
         wrongful birth lawsuit                             
           guidelines for counseling parents
          ​

  

too much to do, not enough me to do it all

   Sometimes I take on too many projects. Ha. Actually, anyone who knows me well knows that usually I have too many projects open at one time.  The last thing I needed was to add a Blog to my already full list of things to do.  But, so far, it's been worth the writing.  I hope it's been worth the reading, too.
   I crave creating. I enjoy quilting, and have 2 quilts in varying degrees of (non) completion. To pacify the frustration of the delayed gratification of quilting, I scrapbook. I have about 15 scrapbooks which are in unfinished project status.  Now mind you, I also have about 20 scrapbooks that are completed, and I'll boast, are pretty darn good.  But the hobby that satisfies both my creativity and my need for completion is cooking.  I currently have NO meals that are half done! No meals that wait for just that right ingredient to show up, no meals that look mostly done, but need just the perfect finishing touch.  In just one hour's time, I can start, and complete a whole meal! And usually, they're pretty darn good, too.
   As executor of my parents' estate, there are many open projects: dispensing with all their worldly possessions, dispersing inheretence to siblings,  making memory albums and photo albums of our childhoods and of our parents lives,  and doing a geneology search of our family tree.
   At home, there's the garden and the fruit trees that produce, not just good food, but more projects that need to be done: strawberry, plum and peach jams, pickles, relish, and freezer stock-up.
   Then there's the job.  If only it could be 'go to work, come home'. But there's always a committee, a class to attend, or a class to teach.
   I could go on and on. There's just too much to do and not enough me to do it all.  I've realized that even the most enjoyable projects can become a burden.  The endless "need to do" list becomes a weight that drags me down and interferes with the stuff of life that really matters.  So,  I've been saying "No" to new projects, and have completed several before I've allowed myself to start new ones. I've even given up on some hobbies.
    But it's more than just about projects. The reality of it is that I am addicted to being busy. I find that my identity, my self- worth is in being busy. Being productive is where I'm comfortable.  I have trouble sitting still. I am the helper, the do-er.  I seek and find approval from others by being busy.
   This poetry came out during the black part of my life.  Now, 10 years later, life is great.  But still I stay 'too busy'. I still reject grace by doing it myself.
          

                       I HIDE

          Stay busy – can’t think.

          Stay busy – can’t feel.

          Stay busy – can’t hurt.

          Stay busy – can’t deal.

          Stay busy – can’t heal. 

          Annemarieke, 8/04/02

                      GRACE

          I fight the voices in my head.

          I’m held captive by their lies.

          I don’t even know it. 

          I move through life on a tether of other people’s needs.

          I imagine I’m good when I perform.

          I am deceived.

          I hear of grace and am amazed.

          I stand approved despite myself.

          Free grace, the gift I try to earn. 

             Annemarieke 8/2/02