Life's Journey with Down Syndrome


 
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 The Beginning of Our Journey

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ellenstumbo

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Number of posts : 2606
Age : 36
Registration date : 2009-01-27

PostSubject: The Beginning of Our Journey   Thu Jan 29, 2009 10:28 pm

This is what I wrote on our blog when Nichole was born, and this is part of my story for Gifts 2.

Last May, when I was 19 weeks pregnant, I had a 4D ultrasound; the kind of ultrasound where you can actually “see” your baby. It was very fun and moving to see Nichole. As I was looking at her, I felt like I needed to ask if her heart was okay. Some of our friends had been through their own journey as their baby girl has had many heart problems and surgeries. I was not concerned about the same thing for Nichole, but somehow I felt like I needed to ask.

The technician didn't say much, except that there were four chambers, and it was good. A few minutes later, my midwife said that they had found some fluid around Nichole's heart, and I needed to have a level 2 ultrasound in Iowa City. I remember walking outside the clinic and crying, I called Andy and my parents, Andy called his parents, and many people started to pray. The next day we were flying to Florida for the Alliance General Council and the ultrasound would have to wait one more week.

That first night in Florida I woke up in the middle of the night. I can't remember if I had a dream, but I do remember having an overwhelming sense that Nichole was going to have Down syndrome. My heart felt heavy and I remember thinking, “Not Down syndrome Lord, it is okay for our friends, but not for us.” Some of our closest friends have a two year old with Downs, and I love Jennifer almost like a daughter. I got to nanny her last year while her mommy worked part time at church, and I have never seen her as a child with a disability.

However, it was quite different as I thought of my daughter having Downs. The next day I asked Andy, “What if she has Downs?” and he said, “Then we will walk down that road, and we will not walk it alone.”

At Council, we prayed for healing for Nichole's little heart and the fluid to be gone. I really believed that God was going to heal her heart, and as we prayed, God very tenderly reminded me that He does not make mistakes, and I felt His peace in my heart.

The last day at council, the Alliance Missionaries had a parade, the new workers were introduced, and the ones that were retiring were recognized. We were very moved and emotional. I felt like we were being called to go into missions, and specifically, to go to the places where we would find the “unlovable ones,” those that by our world's standard are less, and have little to give. So we came home ready to start the process of pursuing missions, and asking God for confirmation.

When we went to have the level 2 ultrasound, Nichole's heart fluid was gone. Praise the Lord! We felt in our hearts that everything was okay. The doctor said not to worry, our baby girl was perfectly healthy. I walked away happy, and even then I asked Andy as we left the ultrasound room, “So does that mean she really does not have Downs?” Up until this point, no doctor had even said the words "Down syndrome" to us.

Two weeks after that we went to my regular checkup. My midwife came in and asked Andy and I how we were feeling about the Iowa City ultrasound. “Great!” we said. “Didn't they tell you?” she asked. “Tell us what? The fluid is gone.” And her face changed, and for the first time we heard someone say, “your baby might have Down syndrome.” And as I sat there God whispered those words to me again, “I don't make mistakes.” “And it will be okay if she does,” we said.

A few weeks later I spent some time in prayer and journaling. I was thinking about the unlovables, “Lord, is that really where you want to take us?” In my journal on June 3rd I wrote:
“It seems to be a time of questioning.....questioning the purpose of these seemingly “complications” during my pregnancy with Nichole. Questioning God's plan and direction for our family. I am wondering if God is asking me, “Do you trust me?” and my first response is, “Of course I trust you Lord.” Maybe He smiles and says, “I will teach you how to trust me.” I know it is not easy to trust God, at least not with.....the trust that requires giving ourselves, yes, our lives, our possessions, our children, our spouse! “Do you trust me” He asks, “Oh Lord I do, but honestly I am so scared, and the truth is, I want to have a perfect life. But more than that, I want to do what you want me to do, and it starts by trusting you, because you are good, and you love me, and true happiness and fulfillment in life come from you alone.”

On October 2nd Nichole was born. Two weeks early, I can't complain! The labor and delivery went almost as smooth and quickly as possible. And yes, Nichole was born with Down syndrome. Jeremiah 29:11 says, “For I know the plans I have for you declares the Lord.”

All along we were thinking missions, and God had little Nichole in mind. “Will you go to those that the world sees as less? the “unlovable” ones? Will you love them?” “Yes Lord,” I said. “Do you trust me,” He asked, “Oh Lord I do, but honestly I am so scared.”

My “life verse” has always been Psalm 139. I prayed it many times while I was pregnant with Nichole. Today there is even more meaning to these verses than ever before.

For you created my inmost being;
you knit me together in my mother's womb.
I praise you
because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me were written in your book
before one of them came to be.
How wonderful are your thoughts for me Oh Lord
How vast is the sum of them.
Were I to count them
They would outnumber the grains of the sand.

It has been an emotional journey, but we know God is good, and our family and friends have poured out their love on us. We have already experienced God's love and blessings in a way that maybe few people get to. Complete trust, that is all we need, unconditional love, that is what we will learn to give. God knew that we needed Nichole, and like Andy said, maybe she needed us too. She is precious in God's eyes and he has entrusted us to take care of her. As we walk this path, we know that their will be hard times but that he will share his joy with us through Nichole.
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rastagalnj

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PostSubject: Re: The Beginning of Our Journey   Fri Jan 30, 2009 9:31 am

Unshakable, unwavering faith, no wonder God trusted you to be Nichole's mommy!! Thanks for sharing your story.
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Samantha



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PostSubject: Re: The Beginning of Our Journey   Fri Jan 30, 2009 10:01 am

Ellen, Thanks for the morning cry.
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SamKat



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PostSubject: Re: The Beginning of Our Journey   Fri Jan 30, 2009 10:08 am

Your Love for your Child shines through in your words. Thanks for sharing.
Mary Beth
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EAS1971



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PostSubject: Re: The Beginning of Our Journey   Fri Jan 30, 2009 5:56 pm

I thought I posted my reply but I don't see it. Thanks for helping, kids! LOL.

Okay, so, I was saying...beautiful story Ellen. Thank you for sharing it. You're lucky to have Nichole and she is lucky to have you. Smile

_________________
--Beth
Mom to Oliver, 7 (DS, ADHD)
and Sebastian, 6
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mom4life

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PostSubject: Re: The Beginning of Our Journey   Fri Jan 30, 2009 7:26 pm

What a treasure she is. Thank you for sharing that with us.
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mom4life

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PostSubject: Re: The Beginning of Our Journey   Fri Jan 30, 2009 8:17 pm

Oh, and Ellen, I really like your new avatar pic.
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David's Mom



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PostSubject: Re: The Beginning of Our Journey   Sun Feb 01, 2009 9:09 pm

Your story is beautiful, Ellen. Thank you for sharing it.
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pookeymom

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PostSubject: Re: The Beginning of Our Journey   Sat Feb 07, 2009 12:38 am

Thanks for sharing your story, I enjoyed reading it.
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nicksmom

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PostSubject: Re: The Beginning of Our Journey   Wed Feb 11, 2009 10:28 pm

Ellen...I am filled with peace and my eyes are filled with tears.
for once, I am totally without words.
(For once! So don't get too used to it!)

You are every bit as beautiful on the inside as you are on the outside. Nichole is one lucky little lady to have parents like you! Very Happy
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