We’re quickly approaching March 18 – Trisomy 18 Awareness Day. Today’s #YourStory was written by Crystal Hopkins, a gal with an intimate, walking-through-the shadows understanding of Trisomy 18.
I knew it from the moment I saw her face.
As the neonatologist rounded the corner to our room, her eyes met mine through the glass. In that instant, my world slammed to a halt. I knew by the look in her eyes that the suspicion the doctors had during my pregnancy was correct.
My 5-day old daughter would most likely die.
She had a rare, life-limiting genetic condition called Trisomy 18. Heart condition. Very large VSD. Joint contractures. Aspiration pneumonia. Pulmonary hypertension. Fluid in the lungs. Oxygen. Not a candidate for heart repair. Take her home. Spend time. Hospice.
Words splintered around me like a log. My mind was a whirlpool of sludge unable to make sense of any of it.
That period of time was as devastating as one can imagine it to be. I began immediately to grieve the loss of what I dreamed our life would be like with a daughter and two older sons, 8 and 15.
However, it didn’t hold a candle to the array of emotion I would experience 11 months later.
On January 26, 2015, my 11 month, 6 day old princess fell forever asleep in my arms, joined at the throne with our Heavenly Father.
Anguish. Despair. Anger. Desolation. Sorrow. Devastation. Confusion. Sadness. Despondency. Woe.
Any given day, any number of those words could be used to describe my state.
How does a parent move forward without their child? Is it even possible?
Preposterously, I thought that my time prior to her passing, knowing it would be an eventuality, would have better prepared us.
I couldn’t have been further from the truth. I came to realize quickly that the mere notion any parent could actually prepare for their child’s death is ludicrous.
The truth of the matter is that child loss breaks the standard order of our realm of understanding.
It happens but it doesn’t happen here.
It happens but it doesn’t happen to anyone I know.
It happens but it doesn’t happen to me.
But it did.
And for some reason, that seemed illogical to me. The earth continued to rotate. The sun continued to rise and set. People shuffled back and forth to work. Birthdays were being celebrated. Children jumped with enthusiasm off school buses. Everywhere around me, life continued to move on. Move forward.
How could this be?
Did not everyone know that my daughter’s remains were in an urn on our shelf?
To never again see her smile. To feel her warmth in my arms.
My heart irrevocably broken. My peace shattered. My faith shaky at best.
It was then, during this period of sheer and utter brokenness, that I began to take note of God’s mercies embracing and enfolding me like a prayer shawl. These, sometimes small, sometimes big, mercies affirmed God’s unconditional love in my life. He didn’t want me to live in brokenness, in suffering.
“…because of the tender mercy of our God,
whereby the sunrise shall visit us from on high.” Luke 1:78 ESV
He offered these moments of clarity, like a flashing Vegas sign, when it seemed that I had hit rock bottom. Could go no more. Where the abyss seemed to swallow me whole.
These sometimes fleeting mercies were just enough to provide the life-sustaining air I needed to make it another sunrise.
Once I began to notice around me these tender mercies, I began to see them as God’s lifeline to me as I struggled to keep my head above water.
These mercies brought joy, unspeakable joy with them.
They brought courage. And hope.
And determination. And grit.
I began to slowly count on this gift as I tried to assimilate into the unfamiliar world I had watched with horror continue around me months before.
And time after time over that next year to where I am now, God rained down His mercies. Providing me the comfort needed to take the next step. Offering the solace necessary to find peace again.
‘Through the LORD’s mercies we are not consumed,
Because His compassions fail not.
They are new every morning;
Great is Your faithfulness.
“The LORD is my portion,” says my soul,
“Therefore I hope in Him!”’ Lamentations 3:22-24 NKJV
A year ago, I was unable to see the forest through the trees. A year ago, I had unspeakable despair.
But today, I am confident, through God’s sovereignty and His promises, that His mercies will carry me. Today I still have the sorrow. Anguish. Despair. Anger. Desolation. Sorrow. Devastation. Confusion. Sadness. Despondency. Woe.
But they aren’t alone. They don’t consume me.
I also now have triumph. Determination. Delight. Resolve. Hope. And JOY.
The waves of deep grieve do still come and do still swallow me. But today it’s different.
For I know that when I feel like I can no longer get air, it will be God keeping me afloat.
Crystal Hopkins is a mother, wife, teacher and outdoor enthusiast who is passionate about making every moment count. A woman forever changed by the loss of her daughter, she is on a lifelong journey to discover and uncover the new person she’s become since. Determined to turn ashes into beauty, she and her family have created Everly’s Angels Foundation, a non-profit charity, to provide much needed bereavement tools to other families who experience child loss. The foundation has been a lifeline for Crystal as she seeks to help families maximize memory making and minimize regret.
Photo credit: Jessica Couto
Facebook: Love For Everly
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If you’re a parent struggling with the loss of a child, please accept this prayer as your own:
Loss is hard, although I’m sure you understand. This struggle I’m facing is more than I can bear alone. I ask you to be my comfort, Lord. Please be my shield. Your compassion doesn’t fail, Almighty God. Your mercies are new every morning. Great is your faithfulness. Guide me with your strength through this darkness. Carry me with your comfort and compassion amid the muck of despair. You are my portion, the One in which I’ll put my hope. I love you, Lord and trust you to see me through this. Thank you. In Jesus’ name, amen.
***In the Tampa, FL area?***
THIS SATURDAY (3/5/16) is Everly’s Angels Volksmarch. For more info, click here.