Danger: The mixed up message of pre-diagnosis

Proud younger brother congratulates the Special Olympian!

Many obstetricians admit to having very little training in counseling women in a crisis pregnancy situation.  It was evident in my own crisis pregnancy.  The many specialists we were exposed to had a limited knowledge of what it means to live with a special needs child.  Worse case scenarios were given without any balance or reference to positive scenarios.

Most women who find themselves in this crisis situation report the doctor presents the diagnosis in the most negative light.  New mom’s who were surprised by their newborn’s diagnosis of Down’s Syndrome in the delivery room, report the health care professionals approached them with the news in the most negative tone.

There is no wonder the abortion of Down’s Syndrome babies is at a record high.  Society is given a skewed picture of Down’s Syndrome due to the dated misconceptions of doctor’s who have not had the privilege of experiencing these individuals and their families first hand.  Some families who gave birth to their babies with Down’s Syndrome, give them up for adoption immediately, due to the limited and outdated information they receive.

Let’s talk about genetic counseling

Genetic counseling when a woman is pregnant, is Not Preventative!  True preventative measures to genetic disorders would take place before a woman becomes pregnant.

In my opinion, genetic counseling is a valid resource, however it should be approached prior to marriage.  When both the male and female have their blood tested, the genetic counselor is able to help you identify if either or both of you are carriers of a genetic disorder.  Then the couple has the opportunity to discuss what responsibility they will take to either get pregnant, or not to get pregnant.

Genetic counseling, while pregnant, should then serve as an opportunity to prepare yourself for the infant-not an opportunity to take a life.

There are three genetic scenarios which cause Down’s Syndrome specifically.  The most common is Trisomy 21, which is known as a “genetic fluke”.  Couples who conceive an infant with Trisomy 21 are not genetic carriers of Down’s Syndrome.  In fact, the statistics for that couple of having another infant with Trisomy 21 is a mere 1%.

Even though Trisomy 21 would not have shown up in genetic counseling prior to conceiving, we took responsibility of a life when we chose to conceive.  A genetic counselor should then offer resources and support to these families.

My responsibility to others in crisis

During my crisis pregnancy, I often thought about other women in similar situations.  Having the experience in the field of social work provided me with personal tools to discover resources and emotional support on my own.  What about the women who were given a crisis-pregnancy diagnosis without being given any tools to cope or make educated decisions?

I wrote a detailed letter to the Perinatologist’s office of professionals, genetic counselors, and our obstetrician.  I made suggestions for resources of counseling, clergy, crisis pregnancy centers, and families of special needs.  These letters were received with positive responses.  The Perinatologist called us with his personal apology for the pressure of abortion I received, as well as offering to spread my letter throughout his office and incorporate my suggestions.  My obstetrician referred a handful of women to me over the years who were given crisis diagnosis, and they came to visit me and my newborn at our home.

These are positive steps health care professionals can take to support women and families in pregnancy crisis.  There are so many positive resources available through local regional centers, Special Olympics, crisis pregnancy centers and churches who can offer education in community support as well as families who are willing to share and support other families anticipating special needs.

Anker and dad, Anker enjoying dune buggy rides!

The truth is, most individuals with Down’s Syndrome are not institutionalized as the specialist told me.  Most of these individuals have mild to moderate cognitive delays, and are able to play a vital role in family and community life.  Certainly there are difficult times, but there are many more wonderful times.  Pass that good news along!

The sad news

Amniocentesis is known as an invasive procedure, causing risk to the infant’s life.  Many women have opted not to have the procedure due to the risk.  But recent blood tests can now give a diagnosis of Down’s Syndrome in the first trimester.  Thus, the statistics of women aborting these precious lives is a staggering 9 out of 10!

Chuck Colson states it well,

Medical tests that separate “acceptable” children from the “unacceptable,” teach us to view our offspring as consumer items. If they aren’t good enough, if they’re flawed in some way, we should simply abort them and try again. It’s the biological equivalent of taking them back to the store.

You can see Chuck Colson’s article via Death By Medical Breakthrough.

My heart for you

Every time I tell my story publicly, I am mindful of women in the audience who are living with the pain and remorse of abortion.  Please know, I do not condemn you.  My heart goes out to you.  I want to offer you a resource filled with encouragement, and rich resources for your personal grief.  Please check out Focus on the Family, specifically these pages: Several years ago I had an abortion. I though Id get over it quickly and move on with my life, but my feelings of guilt and remorse have only increased..  As you scroll to the bottom of this specific page, you will find a host of resources and encouragement for your need.

If you, or a loved one find themselves in a crisis pregnancy, please contact your local crisis pregnancy center.  These centers exist to offer you emotional, physical, and sometimes financial support for your situation.  If you are unable to locate a crisis pregnancy center in your area, contact your local church for a referral.  You may also appreciate this website, chock full of encouraging stories from families: Benotafraid.net an outreach to parents with a poor prenatal diagnosis.

What you can do

If you know someone who chose life-will you embrace them?  If you see a family with a special needs child-will you love on them?  Your support and inclusion of these families helps build inclusive and loving communities for all of these children who have been fearfully and wonderfully made!

(You can read my personal story about a crisis-pregnancy diagnosis and the birth of our baby who has Down’s Syndrome on this website under “Anticipate Grace/when life and belief collide”-a 4 part story.)

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When life and faith collide: We gave God the chance to show up!

Our baby has lived 9 months in the womb!

This is Part 3 of our story.  Please scroll down to Part 1:  When life and belief collide.

There we stood with our usual tear-filled eyes, looking out at the eyes of a group of tear-filled couples.  It may have only been our second time visiting this church and its young family class, when my husband uncharacteristically stood in front of strangers and gave them our prayer request.  These strangers enveloped us, laid their hands on us and prayed for our unborn child.

Men from this church began calling Anker and prayed with him over the phone.  They offered to meet him for lunch and give him support and encouragement.  The women visited me, sent me cards of encouragement and some even offered to sit beside me during my weekly appointments.   These people were no strangers, they were the body of Christ at work, and they were strengthening us.

You see, the Perinatologist and all the other specialists had no clue we recently moved hundreds of miles from our support system.  We moved from Southern California only weeks prior to becoming pregnant.   The specialist didn’t consider our emotional needs or offer resources of support in our decision-making process.   But our Abba Father knew what we needed.

News spread quickly across the miles and telephone wires.  Loving phone calls and letters of encouragement often overwhelmed us.  I kept a scrapbook of these meaningful thoughts from dear friends and family, or people who simply heard about our baby and were praying for us:

“At first I did not quite know how to pray, but want you to know we are praying for a miracle and that God will heal your baby.  If God wants to take this baby home, we are praying He does it soon and that you two and the baby don’t suffer too long.  We will continue to pray for the baby and two of you as long as is needed”  -V & S

“I haven’t met you, but hope you feel the love and support of fellow believers.  May you sense peace and comfort which only the Holy Spirit can delicately give” -M

“I will stand in the gap and pray when you can no longer pray”  -C

The Holy Spirit is not limited by man’s inventions.  He managed to put our names on the minds of faithful prayer warriors, without any means of Facebook or email.  Here is a portion of a letter I received from one who was quickened by God’s Spirit on our behalf:

“I cry for your burden of concern for your son.  What a strong little man he must be!  As I pray for the health and survival of A.J. and for my baby as well, I guess I can only rest in knowing that they are in a special communion with God as they are growing inside of us.

About a month ago I felt a real need to be praying for you on a daily basis.  That feeling started from a very vivid dream I had of you, Bonnie, trying to convey your emotions about the difficulties of conceiving to a room full of pregnant women.  I was taking you from room to room in search of another woman who could empathize.  A friend of mine turned to you and said that she understood.  You reached out and touched her stomach and said, “No, you don’t”.  The conversations were so incredibly clear that when I awoke from the dream I woke P.  up to tell him about it.  You were also a participant in subsequent dreams over the next couple of days.  I knew that I had better be praying for you two. …And now, I know that I’ve been praying for the 3 of you!  Isn’t our God Awesome and Caring!!  Praise to His active hand and His Holy Spirit for allowing us to be connected and active with Him!

May the eyes of the doctors see and understand the authority of Jehova-Rapha!  Knowing as I do that our great Creator loves our babies even more than we do.  As our Creator with a hand that touches all things, I pray that You God, will bring miraculous healing to A.J. and that You will receive all the glory and Praise.  Amen.” -T

Our baby was being flooded with prayer and we knew God was at work.  It was time to go back for my first ultrasound after the diagnosis.  The Perinatologist wanted to keep an eye on the fluid in our baby’s body.  Anker and I had great anticipation for this moment.

I lay on the table with my heart beating calmly…waiting to see how our precious baby was doing.  I had already asked if he was in any pain, and the doctors assured me he was not.  The technician turned the screen away from us.  She guided the cold wand slowly over my tummy.  We studied her face as she stopped and glared at the screen.  She turned and looked at the previous ultrasound picture in the file.  She glared back at the screen, then back at the file again—and dismissed herself.

What were we to think?  Long moments passed as we waited for her return.  Our hearts were  peaceful, we were bathed in prayer.  Finally, the Perinatologist walked into the room with the technician beside him.  He took over the wand and guided it across my tummy again.  He glared at the screen and compared it to the file.  Then he rolled his chair over to my face, “We don’t know what is going on, but the fluid is dissipating”.  He couldn’t explain why.  We were told to be “cautiously optimistic”.

God was at work!  It was up to God what He wanted to do with this little life, and who He wanted to speak to through His creation.  He didn’t promise me a baby, He didn’t promise me a perfect life, but God did promise me He would keep my heart and my mind quiet and at rest as I trust in Christ Jesus.  This was a sweet time.  To be at the mercy of trusting God for all our needs is a painful and a good thing.

I could tell you the tears stopped, but it wouldn’t be true.  Often times Anker came home to find me singing in a warm bath… “Day by day I’m growing stronger, day by day the victory’s won.  As I give my life to Jesus, day by day I overcome”.  The warm water and praise songs soothed my wandering mind.

My heart was growing closer and closer to my fragile little baby.  Being pregnant became a romantic-thing again; conversing and singing with my unborn baby as we trusted in the Almighty Creator.

Appointment after appointment, we continued to be “cautiously optimistic” as the fluid continued to mysteriously-No, miraculously-go away!  When we chose life, I don’t know if we realized we were giving God the opportunity to show up in our lives.  He was revealing Himself, His character, His faithfulness in new and incredible ways. The heart monitoring continued without any concern for the condition of his heart.  Our baby boy was actively kicking and moving.  “If this baby is born alive”, our doctor scratched his head and swore, “This will go down in the books.”

“I believe that I shall see the goodness of the Lord in the land of the living! 

Wait for the Lord; be strong and let your heart take courage; Yes, wait for the Lord!”  Psalm 27:13,14

We were now only weeks away from my due date.  Much of the fluid had gone away.  My O.B. began to discuss with me what the delivery room would look like.  He said if the baby is born alive, he would be discolored, lips blue, and they would need to resuscitate him.  He described all the extra personnel who would be in the room with us, while the emergency team would be waiting at the door of my delivery room.  Here we were-six months after a death sentence-discussing a birth plan.  The doctor repeated his mantra, “remain cautiously optimistic”.

The final ultrasound showed fluid left only in the kidneys.  Now it was time to speak with the Neonatologist: the specialist who would deal with a living, breathing baby.  He advised IF the baby is born alive and still has fluid, he could extract the fluid but it would only come back.

Our son was due June 21, but on the morning of June 4, my water broke.  It was time to deliver Anker Josiah.  Come back tomorrow for Part 4!!

P.S.  Each of our life stories of trial, loss and pain look so different from the other.  But God in His goodness remains the same.  He wants to show up in your life.  I hope you will be encouraged by my story and the video I have inserted as a gift…

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We chose life!

This is Part 2 of our story.  Please scroll down for Part 1  post–”When life and belief collide:My life-altering decision”

We were given a priority appointment with the Perinatologist.  Should we continue on in the pregnancy, he would monitor the fluid in our little babe.   We sat in his office surrounded by medical books and volumes of medical data, statistics,  human knowledge and theory. The bookshelves rose high up the walls and the doctor sat some distance from us.  I felt so small and helpless.

The Perinatologist  warmly told us how our child could likely end up in an institution, maybe wheelchair bound for life, if he ever lived at all.  We took notes, asked questions, and scheduled an Amniocentesis.  There was a glimmer of hope the results of the Amniocentesis would tell us the baby had RH Factor: a diagnosis we could actually do something about.

In the meantime, we sat through a lengthy session with the genetic counselor who worked alongside the Perinatologist.  She pulled out one of the thickest, ugliest  books I ever laid my eyes on.  It was filled with pictures of chromosomes and genetic disorders we never knew existed.  Our eyes glazed in fear as she slowly turned and explained many of the pages.  This is not a book you would enjoy reading, let me tell you!

I was amazed when we left the doctor’s office that day.  No one offered us counseling, no one asked us if we had the support of family.  No one asked if we needed clergy.  We were sent home with a burden of knowledge heaped upon our hearts.  I cried all the way home.

My husband was away on business when I finally received the diagnosis by phone call.  The genetic counselor was on the other end of the line.  Her voice was matter-of-fact as she told me our baby not only had Fetal Hydrops, but he also had a cyst on the back of his neck and Trisomy 21 (Down’s Syndrome).   Without taking a breath, without offering empathy or inviting discussion, she told me she would make an appointment for an abortion.

Instantly I told her there would be no abortion.  She reminded me in her ever-so-cold manner, “Your baby will surely die”.

The Mama-bear arose in me for the first of many times as I responded, “We believe the Lord gives and the Lord takes away.  We will bless the Name of the Lord”.  I hung up and fell prostrate across our cold kitchen floor.  My baby-bump pushed me away from the tile, reminding me of the life inside.  I lay there crying, wailing, spread out in humility for help from my Lord.

I clung to the promises of God.  If I ever believed in Him, then I must also believe in His Words.  I sang quietly in surrender,

“Great is Thy Faithfulness, Oh God my Father.

There is no shadow of turning with Thee.

Thou changest not, Thy compassions they fail not

as Thou hast been

Thou forever will be.”

Jesus quietly asked me, “Do you believe this about me, Bonnie?”  I said, “Yes, Lord”  and continued to softly cry and sing,

“Great is Thy Faithfulness

Great is Thy Faithfulness

Morning by morning new mercies I see

All I have needed Thy hand has provided

(Thank you, Jesus.  This is true.)

Great is Thy Faithfulness

(“Will you trust Me, Bonnie?”)

(Yes, Jesus)….Lord unto Me”

My schedule quickly became filled with doctor’s appointments.  We sat before our young O.B. and explained to him the value we place on this life.  A life that was given by God and could only be taken by God.  We needed to confirm his treatment would also place value on our child’s life.   He told us he had never encountered a case like ours or a couple like us, and he would respect and follow our lead.

Due to the labor Fetal Hydrops can put on a baby’s heart, they monitored his heart twice weekly.  God gave me a nurse who was also a believer.  She encouraged me in the faith.  She told me our doctor’s office didn’t know completely how to deal with me, “Why would a couple like that want a baby like that?” was the popular discussion when we left the office each week.

Those kind of comments didn’t really encourage me, they made me feel more alien-like.  But we knew the comment really was based upon watching a young couple trust and believe in God rather than their difficult circumstances.  This was good.

Previously serving as a social worker and volunteering with special needs children, I knew there were more hopeful scenarios then what had been presented to us.  I quickly learned “knowledge is power”, and I began a personal fight to find all of the knowledge I could.  It was difficult to find.  Seventeen years ago I did not have a home computer, access to the Internet, or blogs where I could find someone with a similar story to mine.  I walked the aisles of the bookstores looking for hope from someone who was given a death-sentence for their baby.  I needed to read how someone could still survive emotionally through her days of pregnancy.  It was not to be found.

It was crystal clear to me the choice for life was God’s desire for us.    HOW He wanted me to live with this choice was unclear!  I was an emotional mess most days.  One moment I would beg God to take our baby’s life sooner than later.  Moments later I would plead with God to do a miracle and heal our baby.

My husband remained a balanced rock while I called him throughout the day to clear my mind and get perspective.  HOW was I supposed to live each day-the next 6 months of pregnancy-without bonding to my growing baby who would “die”?

I don’t know how long it took me to realize I could ask God that question.  I bent to my knees beside my bed and said, “Jesus, I know what You want me to do.  I just don’t know how I am supposed to do it”.  He reminded me, “So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.” (Matthew 6:34)  Do not worry about tomorrow–those things I can’t control.  Don’t create and entertain fears and “what ifs” we may or may not face tomorrow.  Keep my mind on today.

Today–I had a living baby inside me.  Today–he was kicking and moving and growing.  Today–I was pregnant, I was a Mama.  In the midst of any other (normal) pregnancy I would be sewing, strolling through baby departments, knitting.  So I decided I would rejoice in Today!

I went to the fabric store and bought precious baby fabrics for my Anker Josiah.  I began sewing him a baby quilt.  He would play on it one day, or he would be swaddled in the quilt in a baby’s coffin.  Either way, I would make it with all the love and the joy I had for my son.

I bought him the most precious coming home gown I could find.  A Beatrix Potter gown.  It represented life and sweet hope for today.  I hung it from the dresser in our bedroom and I knelt below it often, “Jesus, please fill this gown with our living and breathing baby.  But You know the bigger picture, not my will but Yours be done”.  Sometimes I imagined being the woman touching Jesus’ gown-trusting in the Messiah’s ability to heal.

I began moving on through the hours with enough strength to live for the day.

“Fear not, for I am with you,

 be not dismayed, for I am your God.

 I will strengthen you,

I will help you,

I will uphold you with my Victorious Right Hand!”

Isaiah 41:10

Soon our story would begin to change.

I hope you’ll join me again  for Part 3.

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Running the mile with my special needs child

One of the biggest issues with Down’s Syndrome individuals, is their overall low muscle tone and potential weight gain as they get older.  It is a challenge to keep our own teenager regularly active and engaged in physical activity.

We are always trying to incorporate movement and exercise into his routine.  Among other exercise goals for AJ, is the goal to walk a mile, without stooping, stopping, or resisting.

My husband has carried AJ on his back too many times to mention, because AJ has not been able to walk his way through an amusement park, zoo, or family outing.  When he was too big to be carried or pulled in a wagon, we considered using some kind of adaptive walking assistance for our family trips.  But we weren’t ready to give up the goal for walking just yet!

Thanks to his wonderful 6th grade adaptive P.E. teacher , Mr. Ray was the first one to motivate AJ to make it around the track for the entire length of a mile.  No doubt, every time AJ stooped to the ground to play in the dirt, Mr. Ray cheered and nudged him to get back up and keep walking.  What patience Mr. Ray had for our boy.

We continue working on the goal to walk a complete mile.  We let P.E. teachers and caretakers know we do not want AJ to stoop on the ground during field trips or shopping errands.  We believe he is healthy and capable enough to remain standing and walking, no matter how slowly.

We continue to keep the long-term goal in mind.  Now four years later, AJ is able to walk a mile around the track, shop without stooping, and even willingly take part in the Special Olympics track team.   Through the financial gift of a loving family member, we purchased a treadmill this winter to help incorporate his daily movement.

Lately, AJ makes requests almost daily to go run on the track.  What he really means is “walk”.  Well, run for 3 seconds then walk.  It can be easy to get discouraged by the accomplishments which come so slowly.  But I choose to celebrate his thought and intent, both are great achievements!

Today we went to the park together to “run” along the path.  “To infinity and beyond!” he yells, spreading his arms like Buzz Lightyear as he bursts out running.  He ran a few yards in front of me then began to walk.  We walked arm in arm then I walked briskly ahead as he continued to walk his slow steady pace toward me.

Ten minutes into our walk he began saying he was “all done”.  I ignored him.  Sometimes we get more accomplished that way.

As we completed our walk and headed back toward the van, AJ waved his arms with accomplishment, “I ran track”.  We drove to his favorite local spot for his “groovy smoothie” reward.

We have both come a long way.  He is willing, able and happy to walk a daily mile, and I am more willing, able and happy to accept his growing effort.

Do you have a child who is difficult to get moving?  Leave a tip that works for you.

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Anticipate Grace

My three sons 2004

Through a crisis pregnancy that was given a death sentence,

to a diagnosis of Down’s Syndrome and Autistic Spectrum Disorder,

through much laughter, joy and peace,

panic and tears,

I have learned to Anticipate Grace.

I don’t believe God has promised me a life without trouble,

but He does promise to give me strength in my weakness.

He promises to give me wisdom when I ask for it without doubting,

and He promises there is no fear in His perfect love,

because perfect love casts out fear!

To “Anticipate Grace” is to anticipate pleasure, a favorable decision, with the grace to perform a duty!

I Anticipate Grace-because God always gives us all we really  need- when we need it.

I Anticipate Grace-because my child is of value to God, He will help provide what he needs.

I Anticipate Grace-because there is always pleasure and great joy in a full heart of  love for my child.

I Anticipate Grace- because I trust in the goodness and love of God for our lives.

As I attempt to share our special needs family, I hope you will be able to Anticipate Grace in your own special need.

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Little Old Lady Tree

We pity our little old lady tree.

Bending and swaying, her weak back arches over from the winds.

Branches stretch downward to brush the ground.  It seems as though she will snap.

She is resilient, almost rubbery.  She keeps surviving.

She isn’t thriving as the others. Her roots are shallow and unable to bring nourishment.

A few years pass, she just doesn’t fit in with the other thriving trees and plants in the yard.

I ask my husband to pull her out of the ground.

Put her out of her misery-my misery.  She has become an eye sore.

Other things take precedence.

His honey-do list is long and he works tirelessly at his career.

Each of our kids receive his adoring time and attention.

The oldest, with special needs, demands his extra attention these days.

We giggle and mock that struggling tree whenever we glance at her.

Our youngest boy makes an innocent observation,

“I think our little old lady tree has Down’s Syndrome”.

Suddenly the honey-do list is not so long,

My husband is pulling that little old lady tree out of the ground.

 

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On My Nightstand: March 2011

lady with books

  1. Forgotten God, Reversing our Tragic Neglect of the Holy Spirit, by Francis Chan, David  Cook Publishing.   Hooray for Francis Chan!  His heart is sold out to Jesus.  Says Chan, “The truth is that the Spirit of the living God is guaranteed to ask you to go somewhere or do something you wouldn’t normally want or choose to do.  The Spirit will lead you to the way of the cross, as He led Jesus to the cross, and this is definitely not a safe or pretty or comfortable place to be.  The Holy Spirit of God will mold you into the person you were made to be”.  I am using touch points of this book for discussion in our Woman Gone Wise Bible Study.
  2. Embracing Your Second Calling, by Dale Hanson Bourke, Thomas Nelson Publishing.  I recently picked up this book because I want to live passionately the second half of my life.  I’m gathering different insights to ponder.
  3. Brain Rules: 12 Principles for Surviving and Thriving at Work, Home and School,  by John Medina, Pear Press.  My family is intrigued with the brain.  I’ll let you know about this later.
  4. Boys:  Shaping Ordinary Boys into Extraordinary Men, by William Beausay II, Nelson Publishers.  I love this book!  I carry it everywhere and read snippets at a time.  I pass along a paragraph or a great idea to my hubby.  He has his own long reading list, and this way I’m not asking him to add to his pile.  It’s a good way to encourage Team Parenting!
  5. 1,000 Ideas for Teaching and Raising Children with Autism Spectrum Disorders, by Ellen Notbolm and Veronica Zysk, Future Horizons Publishing.  Our oldest son has Down Syndrome and Autism Spectrum Disorder.  What parent of a special needs child couldn’t use more ideas for daily success?!
  6. My Bible.  There’s one of these on the fireplace mantle, in the van, in my purse and on my nightstand.
  7. Cooking Magazines.  Because I can never get enough.

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