This summer marks the six-year anniversary of the beginning of my role as a caregiver for a child with a chronic illness. At times, my daughter’s diagnosis seems so close – and yet so far away. In those six years, she has blossomed from a child into a beautiful young woman. Today she can speak with authority about her care, her medications and her routines. Six years ago, she couldn’t pronounce her medications - let alone tell you the dosing.

I have changed in those six years as well. In 2011, I worried about her care, her care team and what would happen next. Today I am 100% confident in her care team - and know that somehow everything will work out in the end.

Today my biggest concern is what will happen when our team changes?  Today MY family provides emotional support for her – in a few years SOMEONE else will. This is terrifying. Will someone care for her in both sickness and in health?  Will someone put my daughter first when IBD comes knocking?

I have a dear cousin who is the most remarkable example of a caregiver imaginable. I’ll call her Scarlet. Since 2011 Scarlet’s best friend and husband has been affected by a neuro-degenerative disease in the middle of his life.

This crippling disease has changed an amazing man in ways unimaginable. Scarlet has her moments – but she cares for him in a loving and tender way.

At times Scarlet humbles me. She exemplifies unconditional love. A love that is boundless, unassuming and pure. She is the embodiment of a saint wrapped in the trappings of a mere mortal. She treats each day as a gift, celebrates triumphs and seemingly ignores setbacks.

To Scarlet – and all the other caregivers who choose to give so selflessly to help another – the world is a better place with you walking among us.

It is my greatest hope that my daughter is fortunate enough to find a partner with Scarlet’s heart.


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