Scared in the Dark
She was afraid of the dark. A mess of sweaty curls and swollen tear-filled eyes, she told me that that it had never been so dark. She’d been too scared to move. She’d only been able to cry out for me.
I told her that I didn’t like the dark one bit either. (Madeline L’Engle says we adults lie when we say we aren’t afraid. I can’t shake that thought.) I held her tight and I cried with her, in the warm glow, light from the hallway.
A boy my son’s age, Josiah, he also had his abilities robbed of him as an infant – jaundice mismanaged and lifetime of struggle. His smile and laughter were his momma’s center. He left this world in his sleep 2 Sundays ago. His momma awoke to find her boy had died in his sleep beside her. He’d been laughing with her the day before, bringing sunshine. And it hurts. It hurts deep to know a mother’s heart…a mother’s heart that has already been through hundreds of emergencies, thousands of nights of real fears, no perfect answers for her boy. He never stops being her boy. And suddenly he is gone – her constant companion is no longer by her side, and how can a momma sleep? Her soul, a piece of it, has left this world and the ache will never quite be dulled. And I ache for Ruth’s momma as she has been turning the corner on her 3rd year without her girl (Ruth died much like Josiah). We cry tears as we share our stories, (mine of the beginning of kernicterus, hers of the end). And I cannot escape this pain – this reality that days are numbered and that death is unnatural – that it always leaves fractures behind.
On the good days, I forget about the dark. Then sometimes, I blink and I’m enveloped in it. I’m paralyzed. I hardly know how to cry out.
Except that I become like her, my girl crying… Except that I learn the wisdom of childhood and cry out with abandon, I will not feel that parental presence to remind me that he is light, that He is by my side (He who suffered). He will cary me through the darkness, and in the end He will carry me to this place of eternal light, no more tears, that little bodies made perfect in lavish worship of the Great I Am. He heals all our wounds and can give us the grace we need to make our way through the darkness. He is my hiding place.
Psalm 23 – It washes like the ocean, over and over again, it’s words always ringing true. Age and repetition make it better, richer.)
The Lord is my shepherd, I lack nothing.
He makes me lie down in green pastures,
he leads me beside quiet waters,
he refreshes my soul.
He guides me along the right paths
for his name’s sake.
Even though I walk
through the darkest valley,[a]
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
Surely your goodness and love will follow me
all the days of my life,
and I will dwell in the house of the Lord
forever.
These words came 2 weeks ago, as our community grieved the loss of another child with kernicterus. It hurt too much to publish at the time, and while I am in a better place now, I re-read this and feel that it needs to be said.
Voice and memory need to be given for precious Josiah and all that have gone before him, Gabe, Calien, Kelsey, Ian, Ruth, Gavin, Naomi, John…their precious bodies have left this world, but their stories and their spirits live on! (As a side note, while kernicterus is not said to shorten life expectancy, complications from secondary conditions can arise with some children.)
Who knows what vast numbers of other children join the ranks of these few I know. Our kernicterus group only represents a small strata of children with kernicterus – these are families that have the benefit of knowing the name, getting the diagnosis (for many this is swept under the rug to avoid legal consequences or blame), access to facebook, and the research capabilities to find us. Estimates of children annually being affected by kernicterus and or dying from untreated jaundice are in the 100’s of thousands per year. The majority of these numbers are in developing countries, countries that have little access to screening and treatment for jaundice. I hear that it’s not unheard of for babies disabled by jaundice to be abandoned in the bush of Africa, that as many as 20% of the yellow babies in Uganda’s largest hospital are dying (most without testing or proper treatment). At the same time treatment options and screening tools are becoming cheaper and more easily available with innovations from companies like d-rev and brilliant doctors like Dick Wennberg. Please join me in praying for and speaking out for these innocent children that need our help!
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You can be a voice!
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You can support PICK!
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You can support the KCKC they are working to help improve the lives living with Kernicterus and this is HUGE to those living with this devastating condition! They need hope!
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You can take 5 minutes to ask WHO to add screening and treatment of jaundice to their newborn plan until Feb 28th (tomorrow).
Join me in bringing light to a dark situation.
a Rearranged Life 