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Friday, February 24, 2012

speaking at HB 954 committee hearing



i went down to the capital today and spoke to the committee hearing HB 954. it was the first time i spoke publicly about jedidiah and it was both incredibly hard and incredibly healing- just being able to share his story.
i was the last to speak and had to cut john just a little short on a nursing session when they called my name. i was SO ultra nervous, but the chairman was really understanding and kind- he even commiserated with me when john spit-up ALL over my pants during my testimony.
i wanted to share my notes on my talk. i did expound on a few points- mainly in answer to some of the previous speakers- but here are the nuts and bolts of it...
Good afternoon,
My name is Elizabeth Arendale and I am Jedidiah’s mom. Two years ago my husband and I conceived Jedidiah. When I was 19 weeks along we learned via ultrasound that our son had many many markers that indicated he had trisomy13- a diagnosis that we were told does not support life. During the same hour that our dreams were dashed we were also counseled to terminate our son’s life- since he was going to die anyway.
I immediately began surrounding myself with my support system- the friends, family, and strangers even who were to help me carry this impossible load. I started a blog to keep my friends and family up to date. At one point Jedidiah’s blog was getting 75,000 visitors a week. People as far as China, India, Russia, Australia, Holland, Lithuania, Brazil and many other places were logging in to follow our story. I like to think these visitors fell to the contagion of hope. Parents who dared to hope. Parents who dared to love in the face of death. They sent us many notes of encouragement and they offered up many prayers for our intentions.
Jedidiah defied the odds and was born eight days after his due date on November 5th 2010 at Emory University Hospital right up the road in midtown. We knew he was a fighter when he survived the first night, and the next night, and the next. The following Monday he was released and we joyfully took him home. His siblings loved him deeply. They took turns holding him. And true to siblings gave him a nickname- calling him Jedi and Jedi Joe. They got a chance to meet their brother. To love him. They also witnessed their father and I unconditionally loving Jedidiah despite inconvenience and sorrow. This is the gift Jedidiah gave to us and continues to give us.
For 13 days and 4 hours we got to hold him and love him. Early November 18th he passed away peacefully in the same bed he was conceived in- my husband and I holding him and whispering words of love to him. Not many people can say they were surrounded by love from birth to death. At his funeral that Friday there were so many people - so many who came to hold us up.
Looking back to that day in the ultrasound room I am so thankful I didn’t heed the advice of the perinatologist. While at that time an abortion seemed like an easy way out it I knew instinctively it would have given me a lot more pain than joy. It would have given me a secret pain that I wouldn’t have been able to gather support for. My family and I pray for mothers in the situation we faced- Mothers who are scared and confused. Mothers who want to say yes but feel like they can’t- that it’s not an option. Once during one of these prayers, Jedi’s big brother, my 8 year old son said “if they say no they would just have the sadness and not have the good times.” And that is true. I now believe the easier way out is letting nature take charge. We have a grave to take our tears to. My son has a place of rest- fitting for a Jedi. An abortion would have taken that- and much much more away from me, and it would have claimed to be the easier way out.



and i had this thought on my drive home- too late- but i need to write it down here so i don't forget.
i have heard stories from older mothers- mothers who have a stillborn child. they mourned the loss of their baby, but added to the grief were the actions of the doctors and nurses- how they whisked the baby away thinking that it would be easier on the mom if she didn't see her own baby. they made this decision for the mom- thinking of her best interest. the medical world has only found out within the past few decades that mothers have an easier time of grief if they are allowed to hold and be with their babies.
i can't help but think how in the future we will look back on these years and think "i can't believe we used to think that abortion would be an easier option, a way to bypass the heftiest part of grief."

10 comments:

  1. Elizabeth, thank you for your strength to testify to Jedi's life in front of this committee.

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  2. I was at the Committee meeting, I spoke a few minutes before you did, and I was very moved by your testimony; what a wonderful story of a family overflowing with love! And you spoke so very well - thank you very much for having the courage to come and share Jedidiah's story with everybody and to let us share in some of that joy!

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  3. How very beautiful, Elizabeth. Thank you for your courage, and for sharing your testimony here.

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  4. @ everyone- thank you.
    @ charles- i was so nervous that i didn't hear people's names too well- but i did hear other's speeches.
    were you the one who went to UGA law school, wearing UGA colors?

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    Replies
    1. Yes I did, I spoke on the impact of abortion on men.

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  5. Yes- I remember your testimony Charles.
    It was very needed! My brother works with PATH(a lady from PATH also spoke on Friday). He is a priest and has counciled MANY women and quite a few men seeking healing after an abortion.
    So many in oursociety compartmentalize abortion so much so that they think it's just a medical proceedure that affects Women's bodies.
    It doesn't stop there. It affects their hearts, minds, husbands, families, and society- on such deep levels.
    Thank you for speaking.

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  6. Fantastic! So glad you spoke up, Elizabeth! Your story touched the hearts of my family. God bless your generosity!

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  7. Just read this Elizabeth.

    You are awesome. You are a rock.

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  8. Hi Elizabeth,
    i found this when doing a trisomy 13 search. We, too, have an angel with trisomy 13 and I wrote about her her in my blog: http://belliesbabiesandbalance.blogspot.com/2012/11/november-living-fully-and-gift-of-ava.html.
    I so agree with your testimony, it is what i meant in my blog about "living fully". If we had took it upon ourselves to end our sweet Ava's life, thinking it would save us pain, we would have missed out on one of the most profound experiences of our lives. please read my post and see if it resonates with you.
    blessings to you! nora

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  9. Hello,
    I just found your blog in search of support. I am 18 weeks pregnant and found out two weeks ago that our baby (a boy) has Trisomy 13. He is our 10th baby. We thought we were done after our #9 who is now two years old, but God had other plans. I am 45 years old, and so I did want to stop having babies because I was afraid of... of what? Of this. I am not afraid of another baby. Babies are easy. And having 10 is no different than 9. I was SO looking forward to this little boy! But now I am so worried. So sad. My heart is breaking into pieces ever single day. I go to sleep thinking of him, and I wake up thinking of him. And I feel him kicking in my belly. Thankfully, at our perinatologist appointment (during the ultrasound that confirmed T13 markers) and at the genetic counselor appointment, not one of them mentioned the "option" of termination. Maybe they thought that since we had 9 children already that we would be opposed to that? Or maybe because the hospital they are affiliated with is a St. Joseph's hospital and they aren't allowed to counsel on abortion? I'm not sure, but both my husband and I walked out of that awful appointment very thankful that no one suggested we terminate our little boy. The perinatologist just make me another ultrasound appointment in 4 weeks and said we would get a better look at his heart at that appointment since he would be 21 weeks at that time. She just ASSUMED that we were going to carry to term. That was nice. Anyway... I am really struggling with this. I am showing quite a bit already and I find myself wearing really baggy shirts to hide my pregnancy instead of showing it off proudly as I normally do. I feel so guilty about this, guilty for trying to hide my baby boy, who we have named Aaron. But it's not that. I'm just trying to avoid all the "Oh! Are you expecting again? How wonderful. You must be SO excited. Are the kids excited? Do you know what you are having? When is your due date?" Oh My Gosh...how do you endure that??? HOW??? I have no friends who have carried a baby to term who has had this kind of diagnosis. (I have had a few friends who terminated for DS....so very HARD to keep those friendships. I can't imagine doing that. What I would give right now if my T13 baby were a T21 baby instead!! At least he would live much, much longer and would be able to walk and run and play with his siblings) Anyway, I'm not sure if you are still active on your blog or not, but if you get this message I just want you to know that it helps to read your blog. Ultrasound shows that my Aaron has a bilateral cleft palate, he has a faulty mitral valve but his heart seems to be well formed and strong, he has many brain concerns including a missing vermis in his cerebellum, and an encephalocele on the back of his head with a protruding mass (could be brain matter, could be cerebral spinal fluid -- we do not know yet) and his head isn't the egg-shape that it should be, but seems to be slightly malformed. He has perfect hands and feet, both kidneys, a working bladder, a perfect spinal cord, and a nasal bone. He looked beautiful to me. But...I'm not naive. He seems to have pretty significant markers. The brain being the biggest. I know a cleft palate can be fixed, and perhaps even a mitral valve...but the brain....no, not the brain. I'm heartbroken.
    ~Katrina
    mommy10times@aol.com

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