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

  

Champion's ball team

It's summer.  It's Thursday at 6pm.  It's Diamond #4 at  Herrin City Park.  It's where you'll find Steve and Cindy Miller.  And it's where you'll find the Champions ball team. 
    I stopped by Diamond 4 today. I saw a few kids that I know: Stephanie and John, Ali, Kristin and Clay.  There's many new kids,  But the look on their faces is the same. Pure fun. Just fun.
I look in the stands, and recognize the look in the parents' faces - pride, pleasure.
    I can't believe that it's been 6 years since Emily played there. She blossomed there. She was the self proclaimed catcher, encourager, congratulator at homebase. She could slide into home like a pro. Emily was a Champion and Steve was her hero.

     I quote from an article written by Gail Rissi Thomas for the Southern Illinoisan:   The Champions League is for kids with disabilities, and although there are a variety of problems to overcome among the members of the team; everything from hearing problems, down syndrome, autism and being wheelchair bound, it's not their disabilities, but abilities that are in focus for this adventure.
   The Champions will never play a game against an opponent, but each of these kids will have a winning season on a more  personal level.  Most of them have never known the pride of showing up in uniform, the fun of being a part of a team with their friends, or the thrill of running the bases and hearing a crowd cheering them on.
   When the Champions play, it's guaranteed that everyone, kids, parents, grandparents, and friends of Miller, who show up at the field just to help out, will be happy because nobody loses.  Everyone bats, usually at least twice, and everyone runs (or rolls) around the bases.
   Steve Miller has a fearless force behind every idea that he puts into play.  Miller said that the support and participation of his family is an added benefit in his role as a champion for the Champions.  "This has brought our family closer together.  My daughters are both very protective of their dad.  They want to be sure that if I try to do something, that I'm covered and that it works out OK.  Both of my daughters, their husbands, my wife and the  grandkids - we're all out there together when the Champions play.  And on Thursday nights, with all the kids, we're just one huge family."
    The experience has been as rewarding for Cindy as well.  "We are so blessed," she says.  "The Champions are such a big part of our life.  It's not about seeing ourselves as being fortunate, but it puts a new perspective on our eveyday life.  I would never want people to feel sorry for these children.  They're having a great time.  It's not about having struggles, but about overcoming them.  Steve and I have dealt with alot of kids over a lot of years, but I know that this is by far the best thing we've ever done." 

                                    

     Emily and Steve Miller - 2006

Hey batter,batter, Hey batter batter, Hey batter, batter....

SWINNNNNNG

True Grit

Sweet contentment  

"You have to tag the base!"

          

Encouraging Jay

        

          

Sliding into home. Can you see angel wings?

Try standing like this.  Doesn't that feel great?

To Steve, Cindy, and all the family and friends and volunteers who make Thursday evenings such a special time for us, Thank you. 

What a difference you made in our lives!

 

The tour guide

   Working in Labor and Delivery is not just a job for me, it is my ministry.  I liken myself to a tour guide.  I help women navigate through their journey from pregnancy to motherhood. I have traveled their road many times. I help them avoid pitfalls and guide them in making decisions which will give them their ultimate birth experience  I am well aware that my presence, my actions have an indelible imprint on their families' lives.  I will forever be part of their story.  It is a responsibility not lightly taken.
   Each woman brings her own set of needs.  I've done this for 31 years, so her physical needs are predictable, and met routinely.  But caring for the social and emotional needs that she brings with her and the drama with which she surrounds herself are the challenge.   Some women embrace their labor as a means to achieve the joy set before them, and emerge victorious.  Others are so captive in their drama, they suffer through their labor, and use it as evidence to reinforce their victim-ness.
   In my poetry writing days, I wrote these two poems. The first is about a teen mom, the second one is about a mother who gave back to me more than she had allowed me to give to her.
         

                   IN THE IN-BETWEEN

          The girl moans; this child, mother-to-be,

          Thrown from youthful dreams to woman’s reality. 

          The labor propels her, an unrelenting rhythm

          Claiming her end, demanding her beginning.  

          She’s alone in this in-between:

          Abandoned by his anger and deserted by his fear.      

           I hear her soul’s despair, her agony I hear.

          I come to ease her pain. I touch, I speak, I just stay near. 

                                                 Annemarieke, 8-12-02  

                 

                 GIFTS EXCHANGED

          Just another day, just another mother.

          “Don’ need nobody, done this 5 time befo.”

          I think “Fine, don’t need me, fine.”  

          Labor long, labor hard.

          So, I come, I stay, I touch, I give.

          Just another birth, just another baby. 

          The thank-you note,

          Crafted with gratitude, painstakingly illiterate,

          Is my treasured possession. 

                                               Annemarieke, 8-14-02

  

                        

  
  

Impaired

                   
    A while back, I wrote poems. I have no illusions that what I wrote was good poetry. I just wrote as a way to express and to record the way I was feeling. Poetry did for me then what this blog does for me now. They both give me that "aaahhhh" feeling. Like when you have a little pus pocket of infection somewhere and the fullness of it causes that pressure-pain. For awhile you live with it, cause you fear the cure more than you fear the pain. But the moment you stick a needle in it and some of the pain is relieved, you say "aaaahhhh". Oh, there's still stuff left in there, and there's still healing to do, but just starting the process lets off some of that pressure.
    When you read this blog, I hope you gain insight for your own life, but my primary goal is of selfish intent; to express and record my observations of my life.

                              IMPAIRED

          She entered my life a broken treasure;

          My dreams 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.                                                                   Summer, 2006 - 15 years old

                   Annemarieke     

                                     

   When Emily was born, I had only a few pre-conceived notions of what Down Syndrome would mean to our child, to our family, and it wasn't pleasant.  All I knew was that kids with DS were kept in a separate class in our school and grew up to be adults that either lived in nursing homes or with their elderly parents.  I had seen an man with DS, maybe 40 years old, in Wal-Mart, his mother still holding his hand as she shopped. 
   Those images scared the **** out of me.  But she was flesh of my flesh and I had carried her next to my heart for 9 months, and the love that came from that gave me the willingness to sacrifice my life for her.
   Who she became surpassed all those pre-conceived ideas.  Oh, sure, she had cognitive delays, but she was smart in people skills.  She was part of a Girl Scout troop for 7 years, played on a summer ball team, went to a week-long camp 3 years in a row.  Through a job program at school, she worked at Ryan's restraunt. Although she had bilateral moderate to severe hearing loss, she was bilangual. The spoken language she heard was garbled, but she understood what she heard.  She could speak, but it came out of her mouth, just like it went in her ears - garbled. We were unable to understand most of what she said, so to communicate we used sign language.  Anyone who took enought time to let her, she blessed.  There will be lots of stories about that in futures entries.
   The truth of it all is that while I had thought it would be a sacrifice to mother Emily, it was quite the opposite. I learned more from her than I taught her; received more from her than I gave her.  Having Emily made me better.





  

              

Forgot to remember

   The other day, I watched Home Alone: Lost in NY with my nieces and nephews.  Kevin said to the pigeon lady "I don't think they forgot you, I think they just forgot to remember you."
  You know how it is.  You graduate from high school and your best friend chooses a different life path than you do. Or, your best neighbor moves to a different state.  You intend to remain close, but in the busy-ness of your own life, those relationships fade from the present to the past,  fade from reality to  memory.
    But it's not just about the people who are "out of sight, out of mind", it's also about the people with whom you share your life.  If you're like me, I've focused on the details but lost sight of the whole.  I've worked tirelessly for others and ended up too tired for intimacy with my beloved.  I've lived a parallel life beside and put off  uniting with the one I'd promised to cherish.   It wasn't that I had forgotten my husband, I had just forgotten to remember: forgotten to remember why I was first attracted to him; forgotten to remember why I had said "I do"; forgotten to remember the closeness of new love.
  Who knew that watching that seemingly childish movie would have such an impact on me?  But Kevin's statement reminded me that relationships are more important than my 'thing's to do' list; that relationships don't survive without constant attention; that 'time spent' with something or someone is the barometer of its value; and that honeymoon is not necessarily a destination, but state of mind.
   Now go. Go now. Don't wait! Life is short!. Have fun!  And don't forget to remember what and who is really important to you.