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My Hands That Hold My Child With a Rare Disease

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My hands have encountered a lot of trauma.

My hands have given my newborn baby to a NICU nurse when he turned blue.

My hands have slightly brushed my baby’s leg so he could feel my touch while on a ventilator.

My hands have held my baby hooked up to multiple machines and wires.

My hands have carried my child into the emergency room countless times.

My hands have had to hold down my child for testing and labs.

My hands have come together and prayed for a miracle countless times.

My hands have beaten my steering wheel when I’m having a breakdown.

My hands have wiped many tears off my face through this rare disease journey.

My hands have typed many emails and filled out many forms.

My hands have laid over my child all night to make sure he didn’t stop breathing.

My hands have stroked my child’s face and told him it was going to be OK even though I didn’t know that myself.

My hands have put oxygen on a million times, made thousands of g-tube feeds, and drawn up lots of medicine.

I would truly be lying if I said these hands didn’t have immense trauma.

Oh, but they also hold so much love.

My hands have witnessed miracles.

My hands have felt my baby move when he could barely breathe.

My hands have cuddled the most precious superhero on this earth.

My hands have danced with my miracle.

My hands have been held by my resilient boy when he learned to walk.

My hands have clapped after my miracle has proven many people wrong time and time again.

My hands have reached for the sky to thank God for another day with the best boy in the world.

My hands have typed these posts to raise awareness.

My hands have had the opportunity of a lifetime to be in the hands of a warrior.

So while my hands have faced trauma, they’ve also encountered unconditional love.

Originally published: April 5, 2022
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