On infusion days, Cooper can be found WIDE AWAKE long after his bed time. He’s happy and chatty. Tonight, he couldn’t fall asleep in his bed, so he grabbed his book and crawled into our bed to read until I could join him. He finally wound down and closed his eyes. As I watch him peacefully sleep after a long day at the hospital, with Rare Disease Day quickly approaching, my heart had some things to say…

Thank you Lord for this journey with Cooper.

For the empathy it continues to teach me.

For finding my voice as an advocate for Cooper, and figuring out how to advocate for myself at the same time.

For the compassion I have grown to have for people in all walks of life.

For the angels on earth we meet along the way – those who lift us up.

Please give me strength to fight the battles.

Please give me wisdom to know which battles to fight.

Please give me grace to be the mother I need to be for both Cooper and Campbell.

Please give me the energy, words and actions to pay it forward and adequately recognize and thank those angels among us.

Thank you for this journey. Please continue to show us the way.

Amen