Friday, October 28, 2011

This Is Tough

When I decided to share our journey with Down syndrome for the month of October (Down syndrome awareness month), I knew it would be tough. Some of the essays you have read here I wrote when Nichole was about 6 months old and I was ready  to process what had taken place.

If you have been reading along, you know that when I was pregnant with Nichole, God gave me a dream, and I knew she would have Down syndrome. Throughout my pregnancy I heard God's voice, "I don't make mistakes" and I believed it, I held on to it. Somehow, I felt ready, I felt prepared. I trusted in God's plan.

Yet, somehow, when Nichole was born...the reality of the situation threatened the very truths I held on to. And somewhere along the way, I let go of those truths and I began to question.I  felt ashamed at my lack of faith, afraid that people in our church would see how I was feeling. A pastor's wife shaking her fist at God and demanding "Why!"

The last days at the hospital became very dark. I have little recollection of them, other than my feelings, and trying to keep it all together. I became obsessed with nursing and pumping for Nichole because it was the only thing I felt I had control over. The simplicity of feeding my baby became a significant part of my journey the first weeks of Nichole's life.

Why do I share this with you now? Because the next part of my journey is quite a vulnerable place in my life. I was in a hole, a deep dark hole. Inviting you a little scary. Okay, a lot scary! The entries in my journal during that time, are very hard for me to read, let alone share.

If you have a child with Down syndrome and struggled with your child's diagnosis. I think you might have an idea of how this feels.

Or you might wonder why I am even sharing all this stuff. As a Christian, I felt great shame in questioning God, doubting His perfect plan, doubting that He was indeed blessing me with Nichole. I do not believe that I am the only one who has questioned God. I wish I would have had the courage to share my feelings at the time, because I know now that I would have had great support from those that had walked this road before. And I would have known that it was okay. That for some, questioning God, is part of the journey.

My faith in God, my trust in Him, was a broken vase. I was so broken. Allowing you into that brokenness is hard. But God did meet me in my brokenness, I did come back, much like a prodigal daughter.

In the words of Henry Nouwen...
"The immense joy in welcoming back the lost daughter* hides in the immense sorrow that has gone before....our brokenness may appear beautiful, but our brokenness has no other beauty but the beauty that comes from the compassion that surrounds it."

I will continue to share here, I will continue to write. I am not pushing this to be an October thing. Bear with me, this is hard.

And this is something I want to say, maybe as a disclaimer, because the next few entries will be hard, and dark, and ugly...

Nichole is the most beautiful gift I have been given. I wish I had known then what I know now. I wish I would have known the love that would surround me. The joy that shines from this child of mine. The love I have for her is so strong, so different, so fueled by God's own love for me. It is hard to explain. She inspires love in me.

Road Marker 321 came to me also as a dream. It captures the significance of this journey I am sharing with you, it is the most "close to my heart" essay I have written. So as you read, as you see into the hole I was in, please remember that this is a story of transformation, of great beauty, and of a perfect gift. The swamp was such a short moment in the greater scheme of love.

(*Italics by me, and I changed the word son for daughter. From the book "Return of the Prodigal Son")


  1. I am so in awe of the beauty of these posts. I am really proud of you for facing these fears and telling your beautiful story. I look forward to the next entries!

  2. I have been reading your posts and love the story. Thank you for sharing! Karen H.

  3. I would be surprised if anyone didn't question God when shocked with a DS diagnosis. I did at the time but shortly after apologized and thanked him. I wish I could have a do-over of Hailey's birth. If only I had known then what I know now, I could have made it the joyous occasion that it truly was! Thanks for sharing your story!


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