Down Syndrome Awareness: A Different Road, Part 1

For Down Syndrome Awareness Month, guest blogger Ellen Stumbo tells her story of receiving and accepting her daughter's Down syndrome diagnosis.

October is Down Syndrome Awareness Month. So guest blogger Ellen Stumbo chose to write this two part series to describe what it was like to  learn her second child would live with Down syndrome. Today, Ellen shares her initial reaction.

Down Syndrome Awareness: A Different Road, Part 1

I stood in the middle of a vast clearing. The breeze was gentle as it stroked my face, and the air carried the sweet aroma of wild flowers. The sun delivered beautiful golden rays that pierced their way through cotton clouds and gently touched the horizon. There I was, eagerly waiting for the glorious moment when I would get to take my first step into the beautiful road that lay in front of me. The road that was full of everlasting rewards. A road that held so many of my dreams, my hopes, and my ambitions. One that promised so much joy, beauty, and love; it was inviting me to come, to enjoy, and to discover. The road of parenting.

The gate at the head of the road looked like it came from the land of fairies. Its arch covered with lavishing vines that entwined forming intricate patterns. Dozens of flowers decorated the gateway as it welcomed its travelers. Down the road, strong oak trees provided shade for parents to get their much-needed rest and gather their strength. There were rocking chairs scattered throughout the road occupied by women whose lips whispered lullabies to their sleepy little ones. Fathers beamed with pride as they carried their children and lifted them up over their shoulders for all to admire. As far as I could see, flowers of all sizes, shapes, and colors paved the way. Their delicate scent had made its way to the gate opening. The songs of birds were a perfect symphony that invited all to sing. I could hear cheers and applause as children reached milestones and continued to walk farther down the road, into toddlerhood, childhood, and adolescence.

I watched as other parents took their first steps. Some were clumsy, some were nervous, and some were anxious. Some parents were experienced, having walked this road before. Some giggled, some cried. The excitement and wonder of welcoming a new life was contagious. The babies that they  held close and tight, had captured their hearts, and changed their lives forever.

I was next in line. My turn was finally here. I stood at the gate with full confidence, ready to take that first step. My eyes fixed on the road ahead. The anticipation hard to contain. My determination and desire were almost tangible…

A gentle tap on my shoulder.

I turned around and next to me stood God.

“Child,” He said softly, “This is not the road you will travel.”

I was startled, confused. He gently took me by the hand and led me to the opening of a different road. I had noticed other roads at the clearing, but I had not paid attention to any of them. These other roads were not often traveled; they seemed lonely and rough.

“This one is for you,” God said.

My heart sank. This was not what I was expecting; it was not part of the plan, my plan. For there, before me, stretched a dark and gloomy road. The path was covered with thick and deep mud. There were decaying trees along the side whose branches hung low and heavily over the trail. The gray air was murky and suffocating. Slimy vines hung like a heavy curtain ready to trap all those who dared travel by. I could only imagine what other horrible sights awaited in the distance, for I could only see so far.

“Lord,” I dared to say, full of fear and anguish, “I believe this is a mistake.”

He smiled, looked me tenderly in the eye and whispered, “Sweet child, I don’t make mistakes.”

With tears, I took the first step into the road labeled, “Down syndrome.” Soon my tears were flowing. The mud of the “characteristic physical features” was thick. It was hard to walk, hard to lift my feet. There were places where I thought I would get stuck, or that the mud would drag me down and swallow me altogether. All the low hanging branches were different medical and physical problems. I was not able to avoid the cardiac and GI branches; I had to work my way around them. The air of intellectual disability made it almost impossible to breath, its derogatory term “retarded” was noxious. And the vines, they were everywhere! They were all the comments, the doctors, the looks, the whispers, the endless questioning, and my own thoughts.

I glanced back. I wanted to look at those traveling the beautiful road I had longed to travel.  The one I had chosen. I saw the smiling faces and the many people walking through the gate. Oh, the beautiful sight! But that was not where my feet were standing. Here I was, trapped in an ugly prison. I wanted to get out. I was not supposed to be here!

Did You Feel Like Ellen?

Did Ellen capture the emotions you felt when your child was diagnosed? What would you add to what she wrote? Leave a comment if you like, and come back tomorrow to see how Ellen’s view of the road ahead changed.

Part Two

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22 Comments

  1. October 20, 2011    

    I still yearn for that road… this brought back those emotions. Thank you for sharing.

  2. October 20, 2011    

    I still yearn for that road… this brought back those emotions. Thank you for sharing.

  3. October 20, 2011    

    Stacie,

    Be sure to come back tomorrow for Part 2. It is very encouraging.

    Jolene

  4. October 20, 2011    

    Stacie,

    Be sure to come back tomorrow for Part 2. It is very encouraging.

    Jolene

  5. October 20, 2011    

    Stacie, thank you for sharing. You know, at some point I was afraid that I was the only one that had ever felt this way. Ashamed at my lack of trust in God and a good and perfect plan. Thankfully, as I traveled this road, I discovered HOPE!
    When you say you still yearn for that road…I get it. I know what that feels like.

  6. October 20, 2011    

    Stacie, thank you for sharing. You know, at some point I was afraid that I was the only one that had ever felt this way. Ashamed at my lack of trust in God and a good and perfect plan. Thankfully, as I traveled this road, I discovered HOPE!
    When you say you still yearn for that road…I get it. I know what that feels like.

  7. Nancy Woleslagle Nancy Woleslagle
    October 20, 2011    

    Brought tears to my eyes. I would only add the branches that unexpectedly whip us in the face and cause tears to sting our eyes. That branch we didn’t expect, but saw others dealing with. Then wham! It hits whether it is another surgery, diagnosis, or financial issues.

    Also can you have feet in both roads???

  8. Nancy Woleslagle Nancy Woleslagle
    October 20, 2011    

    Brought tears to my eyes. I would only add the branches that unexpectedly whip us in the face and cause tears to sting our eyes. That branch we didn’t expect, but saw others dealing with. Then wham! It hits whether it is another surgery, diagnosis, or financial issues.

    Also can you have feet in both roads???

  9. Suzanne Suzanne
    October 20, 2011    

    That was truly beautifully written and very very descriptive…really gives one the true feeling. But no, despite the many medial issues that came along with it, it was like we were walking along the road; and saw all the great things ahead and were blind sided by a BIG hole in the ground. So we tripped over the hole…stunned and shocked and continued along the road once we climbed out of the hole….maybe we had more ‘thickets’ than others, or things that inadverantly flew in our faces but…oh the smell of the flowers….our child…wow…I don’t know…she’s an stunning beauty inside and out…brings radiant joy whereever she goes.

    Maybe it’s a hard goodness? If that can be; like Nancy said ‘feet in both roads’?
    Thanks for that, superbly written!

  10. Suzanne Suzanne
    October 20, 2011    

    That was truly beautifully written and very very descriptive…really gives one the true feeling. But no, despite the many medial issues that came along with it, it was like we were walking along the road; and saw all the great things ahead and were blind sided by a BIG hole in the ground. So we tripped over the hole…stunned and shocked and continued along the road once we climbed out of the hole….maybe we had more ‘thickets’ than others, or things that inadverantly flew in our faces but…oh the smell of the flowers….our child…wow…I don’t know…she’s an stunning beauty inside and out…brings radiant joy whereever she goes.

    Maybe it’s a hard goodness? If that can be; like Nancy said ‘feet in both roads’?
    Thanks for that, superbly written!

  11. October 20, 2011    

    Amazing, isn’t it? How our children transform us? And although I wrote this essay with only Nichole in mind, yes, some of us do travel several roads. Thank you for taking the time to leave a comment. When you write something that comes from such a deep place, it is encouraging to know that other people get it.

  12. October 20, 2011    

    Amazing, isn’t it? How our children transform us? And although I wrote this essay with only Nichole in mind, yes, some of us do travel several roads. Thank you for taking the time to leave a comment. When you write something that comes from such a deep place, it is encouraging to know that other people get it.

  13. Amy Amy
    October 20, 2011    

    I am really sorry that all of you have felt this way. Truly. I am anxious to read part 2 as at this moment, while the piece was beautifully written, I think it is Horrible. (I don’t mean it in a judgmental way) I just mean that I hope your child never reads this or feels as though he/she is “less than” or “not enough”

    What a cliff hanger!! I am hoping that you now view your road as one that was specifically and carefully designed for your family. If not, we need to talk =0)

    If you were looking for an emotional reaction, you got it, Jolene. :0)

    (for those of you who don’t know me, I experience infertility and had to wait 13.5 years to have a child in my arms. I learned several months later that my precious girl (and our family) would experience autism. However, I have never felt the way described in this piece and my heart breaks for those of you who do or did)

    Eagerly anticipating part 2 and the rest of the story!

    Hugs to all of you!

  14. Amy Amy
    October 20, 2011    

    I am really sorry that all of you have felt this way. Truly. I am anxious to read part 2 as at this moment, while the piece was beautifully written, I think it is Horrible. (I don’t mean it in a judgmental way) I just mean that I hope your child never reads this or feels as though he/she is “less than” or “not enough”

    What a cliff hanger!! I am hoping that you now view your road as one that was specifically and carefully designed for your family. If not, we need to talk =0)

    If you were looking for an emotional reaction, you got it, Jolene. :0)

    (for those of you who don’t know me, I experience infertility and had to wait 13.5 years to have a child in my arms. I learned several months later that my precious girl (and our family) would experience autism. However, I have never felt the way described in this piece and my heart breaks for those of you who do or did)

    Eagerly anticipating part 2 and the rest of the story!

    Hugs to all of you!

  15. Amy Amy
    October 20, 2011    

    P.s. My daughter was gifted to us through adoption

  16. Amy Amy
    October 20, 2011    

    P.s. My daughter was gifted to us through adoption

  17. October 20, 2011    

    Yes Amy, you will have to come back to read part 2! This is a journey in dealing with the diagnosis that some of us have to go through. God has created us all so uniquely different. And even in brokeness, glimpses of God are revealed.
    Thanks for the comments and for sharing. One of my girls joined our family through adoption too.

  18. October 20, 2011    

    Yes Amy, you will have to come back to read part 2! This is a journey in dealing with the diagnosis that some of us have to go through. God has created us all so uniquely different. And even in brokeness, glimpses of God are revealed.
    Thanks for the comments and for sharing. One of my girls joined our family through adoption too.

  19. Amy Amy
    October 20, 2011    

    Thanks Ellen! Your writing is beautiful!

    A friend shared this article with me today. Has anyone else read it? Made me cry and made me thankful…

    http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1&src=tp&smid=fb-share

  20. Amy Amy
    October 20, 2011    

    Thanks Ellen! Your writing is beautiful!

    A friend shared this article with me today. Has anyone else read it? Made me cry and made me thankful…

    http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1&src=tp&smid=fb-share

  21. October 21, 2011    

    Yes, someone sent me the link yesterday, and I read the article. The author expresses the emotions of parenting a child with special needs eloquently.

    Jolene

  22. October 21, 2011    

    Yes, someone sent me the link yesterday, and I read the article. The author expresses the emotions of parenting a child with special needs eloquently.

    Jolene

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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