Scribed In Light

Tina Campbell – Scribed in Light

I sat with the results on my Nana’s heart and for awhile the world couldn’t possibly feel any heavier. It felt still. Like the air itself was waiting what to see what would happen next.

It was a moment across the phone. A voice I know better than my own. A daughter-my daughter-trying to steady her words, hold her courage, and speak through the kind of news that no mother ever wants to deliver.

On the other end of that call…was me. Just a mother. Just a Nana. Doing what we do when the ground shakes beneath someone we love. We steady. We breathe deep…and we lift the bucket.

one more label, one more layer

Our beautiful Ezra already lives with ONH and Autism, and epilepsy, and blindness. She walks in a world most of us will never see-and she walks it with joy, with giggles, and with wisdom beyond her years. She is a spark in the dark. A miracle in motion. Now…another diagnosis. CLTC – a rare genetic mutation. So rare that she is #36 of the entire world.

It came quietly in a phone call, but the weight of it echoed loudly in my daughters shaky voice. She didn’t slam her fists on a table. She didn’t scream…because the grief that comes with rare diagnoses doesn’t usually roar. It settles. It hollows. It sinks in…and then it shapes the next chapter.

As A nana… and as a mother

My first instinct was comfort…but my second-the one that made my voice crack -was grief for my daughter and son-in-law. Greg and Alyssa are in the trenches. They have been since Ezra’s birth. They’re not just parenting a blind, autistic, epileptic, medically complex child. They are advocating, researching coordinating specialists, writing emails, making calls…and still – they show up for snacks, bedtime stories and snuggles, toothbrushing, and giggles.

They are doing the impossible every single day…and I am watching them with both pride and ache.

No mother ever outgrows the need to protect her children…even when they are now parents themselves. So I hold them. I cover them in prayer. I whisper silent affirmations over them when the weight gets too great.

“You are doing it.”

“You are showing up.”

“You are enough.”

Even on the days they feel they are drowning…which accounts for most.

faith doesn’t cancel the ache

Let me say this clearly: Faith is not the absence of grief. It is the presence of God in the grief. I don’t always feel brave, but I feel carried.

"When you pass through the waters, I will be with you...and when you walk through the fire, you will not be burned." -Isaiah 43:2

It does not say the waters will not rise. It says we won’t be alone in them…and that is what I cling to.

for the ones holding buckets

If you’re reading this and you feel exhausted-if you’re carrying the weight of a diagnosis, the burn of advocacy fatigue, or the quiet sorrow of seeing your child face what no child should -you’re not alone.

You are not failing.

You are not weak.

You are not overreacting.

You are not lost.

You are walking a road that was never meant to be walked alone. There are others like me, standing at the edge, whispering “I see you, keep going.”

TO MY EZRA VIVIANNA

You are not your diagnosis.

You are not the sum of acronyms.

You are not what science sees under a microscope.

You are divine breath in motion. A walking testament that beauty does not require sight-only soul. A testament that love does not need words-it only needs presence. A testament that joy is real even when carrying heavy buckets.

You are not fragile, my grandangel. You are fierce.

Today I light a candle in my heart – for Ezra… for Greg and Alyssa… and for every parent running on research and prayers. I light one for every Nana carrying the buckets and the heartaches…and for every blessed child quietly fighting to be seen beyond the labels.

“Father, give them light where they cannot see. Give them peace where their body aches. Give them each the strength to carry the buckets- because sometimes, love doesn’t make the weight go away. It just makes it easier to carry.

"I will lead the blind by ways they have not known, along unfamiliar paths I will guide them;  I will turn the darkness into light before them and make the rough places smooth.  These are the things I will do;  I will not forsake them."  -Isaiah 42:16

“Your words are a lamp unto our feet Father and we lean into you for strength, guidance, and healing. I hold tight to your words, not because I understand everything, but because I trust you in everything. My faith walks where my eyes cannot, and I will keep walking. I may not know the way forward, but I know the one who walks before me…and that is enough. I am depending on your word, Lord. I depend on you. Encompassed them with your host of heavenly angels and your breath of grace. Hallelujah! Thank you Father.”

Hugs, Love, Light, and Grit

Tina Campbell | Scribed In Light