Everything about her amazingly beautiful face seemed crooked. Her eyes. Her smile. Her ears. Even her head had a flat spot on the back, but her life could be summed up in one word, “Miracle.” The attending OBGYN at her birth did not predict a future any longer than for her cheek to be tenderly kissed with a tear-stained goodbye. God had other plans. She was a unique, powerful child despite her fragile packaging. Trisomy 18 (Edward’s Syndrome), along with its strengths and weaknesses, became the center of the fragile tightrope we walked as a family. Every one of her cells was impacted at the moment of conception. She lived seven and one half years, despite 90% of her peers departing earth before they had lived one.
I purposed in my heart that her funeral would be a celebration of her amazing life. Word was spread to wear bright, life filled colors to commemorate her personality of excitement and love. We danced and sang and gave proper attention to the gift of Carly Joy that we shared so generously. She was/is a celebrity in her own right. I laughingly told people, “I’m gonna ride the shock train for just as long as I am able.” And I did.
I only missed one week of work and was careful to keep Kathryn and Janae active in their daily routines and extra-curricular activities. I saw in my spirt that a huge hole had been blown out of her bedroom exposing everything of that delicate, purple little girls’ room. However, the gaping hole was flooded with a brilliant, powerful light. I knew deep down her required time on earth was not in any way cut short. We would trudge through, and continue forward, one step at a time.
Grief has a mind of its own. The hollow agony of loss would come at both welcome and unwelcome times. I had learned to lean into suffering and meet it head on. I would identify my feelings, try to reach the bottom of those emotions, and offer what I held to God. He, in exchange, would bring a sort of resolute peace. I noted a rhythmic, wave type pattern to these emotions and was so very grateful that as sure as I descended to the trough, I would soon find my self undulating upward once again toward the crest. In time, the frequency of these shifts began to lengthen.
One day, it seemed that my time of mourning was over. I could feel the slight jolt as if coming to the conclusion of an amusement park ride. My heart was happy and whole. I notified my then husband, “Take me dancing.” He did.
It was fun to be wanting to go out and dress up. As my curling iron heated, I slipped into my pre-pregency pair of black pants and donned high heels. I found matching earrings and bracelets for the special occasion. I applied my makeup and sprayed my favorite fragrance on my wrists and neck. I felt beautiful from the inside out, similar to the excitement of preparing for a first date.
I imagined us driving to some high class joint in NYC. In reality, it was only a quaint bar located on the picturesque oceanfront in Jacksonville Beach. The staircase led to an outside balcony that wrapped around the front of the building. We sat on the balcony facing the dance floor and ordered drinks. We touched and laughed, and engaged the bar tender. Everything about that space seemed to be made of wood, stained in a rich dark color. The gentle breeze kissed my cheeks and swept gently through my hair. I soaked in the ambiance and took in a deep breath.
The dance floor was minimal and customers were lacking, but the DJ played memorable hits from the 80’s. There was a group of African American women celebrating with an impending bride. I was drawn to the exuberance they carried. I didn’t think they would mind my dancing on the periphery of their party. So I did. It was fun, and freeing, and healing all at the same time, like a private party that God had planned for me on this particular night. My face beamed, my heart as well. Happiness is a beautiful thing to feel.
Life is full of many sad goodbyes and traumas. I wish it wasn’t this way. Often when I pray for people who are grieving a loss, I intentionally pray that their grief would only be experienced for the proper alloted time and not one day longer. My heart hurts when it seems that someone is emotionally “stuck” for many years. I hope for you whatever pain you are experiencing, that you too will one day very soon say, “Take me dancing.”
There is a time for everything and a season for every activity under the heavens: a time to weep and a time to laugh, a time to mourn and a time to dance.
Ecc 3:1-4.
Well said, thank you for sharing. Are we ever healed, or are we to carry our scars and limp the rest of the way to our heavenly home due to these battles and grief?
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Thank you, Sean for you and Allison being a part of my story. Thank you for all that you do for The King!
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I’m blown away again by your words. You are inspiring.
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Thank you for faithfully reading my blogs. I always appreciate your comments and insights.
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Wow. I, too, am once again blown away.
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Thank you, Terri. I appreciate that you take the time and let these stories touch your life.
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