A Beautiful Life

For whatever reason, my basic personality, I guess, I don’t much get into sharing my political views with others.  But this is something near and dear to my heart and I have to “share.”  Yesterday marked the anniversary of the decision of Roe vs. Wade, which I guess I didn’t always give much thought to.  Although I knew, of course, knew the abortion argument but never saw my role in it.  And really, didn’t give it much thought.

However, one day that all changed.  What did it take???  A simple phone call.  One that rocked my world and forever changed who I am or thought I was.

This phone call was from the Genetics Counselor at the Hospital.  She said, is this Mrs.  O’Connell?  Yes, it is.  Well, she said, we received the results of your Amnio and your Baby has Down Syndrome.  At that moment I remember my blood went cold and my heart dropped to my knees.  I remember looking out the window of my boys room and swear I thought I saw the color of the sky turn a different color of blue.  WHAT???  How could this “happen to me, I thought.”  (this is not a thought I am proud of but it is what I thought).  I was numb.  I immediately thought, Autism and now this, what is God thinking, what am I going to do???!!!!  This all ran through my mind in the span of about 3 seconds, then the “Counselor” spoke again.

The Counselor then said, it is nothing you did Mrs. O’Connell.  Now, do you want to schedule a termination of the pregnancy?  THEN, I lost it.  WHAT, NO!!! HOW CAN YOU SAY THAT TO ME???  Then full blown hysteria set it.  I wanted to throw up, the first and only help offered was to terminate the pregnancy.  I called a Dear Friend who circled the wagons, then I lay on the couch for 24 hours in tears.  My baby… people already think my Sweet Baby is not worth having life.

I then had to call back to make an appointment  with my Doctor.  In a puddle of tears I went to this appointment.  Why?  I said.  And why do they immediately ask you when you want to schedule a termination?  I just want to know how many people terminate?  Well, she said, at this hospital, if we have 6 positives for Down Syndrome, 3 of them are terminated.  More tears again.  I was full of mixed emotions.  I was overwhelmed.  But I kept thinking I am having a baby that 50% of the population don’t think is worthy of life.

Then I didn’t know how to tell people, so for a while I didn’t.  Afraid of what 50% they belonged to.  Some close friends knew and they were supportive giving me names of friends of friends I could call, but I needed to find my own way.  I lurked around on message boards and found something that spoke to me.  A couple that decided to share the news with others and let their anticipation of this new Little Person be known.  Then when the New Little One arrived, there would be no period of time where  friends and family wondering how to react, what to say.  They would know that we were excited and hopelessly in love with our Baby.  I went with this.  It worked for me.  With a close few I shared my fears but also my hopes.

On July 4, 2009, this “theory” didn’t matter anymore to me.  Our Precious Baby Girl, Madeline Elizabeth came into this world, it was no act, WE WERE BEYOND IN LOVE.  She was just BEAUTIFUL and I couldn’t wait to show her off.   Neither could the Big Brothers.  Daddy, took one look and said, Madeline, YOU can have whatever you want, Precious Baby Girl!

We spent the next 16 months in a near constant fight for her Precious Little Life.  It is a fight I would do again without a thought.

Our grief renders us immobile at best and unable to function on the really bad days.  What I wouldn’t give to stroke that golden hair, get a signature Madeline Rasberry Kiss, and do the 50 yard dash across the house because she figured out how to remove her trach.  I think she kept a stop watch to record our time.

I am sooo happy we Chose Life.  The love she brought forth is what life should be about, I would hope.

So…what I thought as I was running this morning.  If having a child with Down Syndrome is such a horrific tragedy, that they should never draw their first breath then WHY am I soooo sad and broken that my Little Madeline is gone.  What a blessing her life was.  As her Big Brother said on meeting her…………..”Mommy, I don’t know why they say something is wrong with her, she looks fine to me……….”

Precious Baby Girl, Madeline

 

 

11 Comments

Filed under Precious Baby Girl

11 responses to “A Beautiful Life

  1. When I was pregnant for the second time, the triple screen indicated high odds for Down Syndrome. I have worked with special needs kids since I was twelve years old, so we had a good idea of what that might mean. I declined amnio because we didn’t want to risk losing a baby we were going to have anyway. The perinatologist argued with me about even considering bringing a Down baby into the world. I never went back to him.

    I am so, so sorry for your loss. I cannot imagine how difficult that must be. She was beautiful.

  2. Jim Shunk

    She is Precious and was sent to your family for that very reason.
    God wanted her to have an extra special home while she was here on Earth and a extra special family to look out for her for that time.
    There was nothing wrong with her as I tell my Grandaughter “Chloe people are different in many way’s that doesnt mean they are bad or good, better or worse just different thats the way God made us.”
    Im so glad you chose to be on the good side of that 3 out of 6.
    God Bless..

  3. Tami

    Excellent writing, Amy..and my heart goes out to you…

    You ARE special, able to endure things that others just simply could not. Thank you for sharing your life with us.

  4. Jeanne

    amy,
    God points us in certain directions and gives us choices everyday. Your choice was for life! Write this so others can choose LIFE TOO! I just realized your “lifeaccordingtojohn” isn’t just about John it is about choosing LIFE! You have a story to tell and you have a voice that needs to be heard. Just think if just one of those 3 read about your stories and choose life. Not because it is hard but because it is precious. You remind us that it is precious! This is just another reason why I love you and think you are awesome!

    love Jeanne

  5. Cara Pestorius

    Beautifully written. You are amazing, girl! LOVE YOU!!!

  6. Amy – my heart broke for you the day I learned of Maddie’s passing. I think about all the parents that God could have given her to, and am so thankful it was both of you. I know not all of us are strong enough for the right choices, but I’m so very thankful you were!

  7. The Original Amy

    Beautifully written…those who were lucky enough to know Madeline never really noticed the Down Syndrome or the trach….just pure love.

  8. Bill Kirk

    Amy,
    Maureen Haas shared your timely inspiration. Our first born, Sara Angela, was Downs and we then had three non-effected children. Sara has been the angelic architect of our family mission. We lost our Sara 16 months ago at age 38. She now guides us each day. I will now include Madeline in my daily prayers and conversations asking for guidance – as they are now sister angels.
    We’ve been able to modify our painful grief to a framework of genuine joy knowing that our daughter has attained the ultimate joy and now looks over us all.
    God bless you all.
    Bill Kirk

  9. Marty Hull

    Amy and Rich,
    I never knew you guys went through this until yesterday when Rich cc’d me on an email regarding a retirement. Leslie and I are heart broken over your loss. I believe God has a purpose for everything, and though she’s sitting in heaven praising Jesus everyday, we’re left here to feel the sadness of her absence.
    You guys are wonderful people, and I know she must have been a blessing to all that knew her.

    Marty

  10. I’m sorry for your lost. However I am glad that you chose life! She was perfect…God created her with no mistakes and no regrets! And I hate that question doctors ask parents expecting a child with special needs! People that terminate their child based on the fact they may have more needs than others just simply don’t need any child in my eyes! She was so pretty!

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