Some things our children say are indelibly etched in our memories, word for word. They make us laugh, their naive wisdom stops us dead in our tracks, or they reflect some unattractive part of ourselves we never knew they saw. For me, as I wrote about in the previous issue of this newsletter, it was Christiane’s answer when asked what made her special. She said simply “I get to learn how to read Braille, and one day I’ll get to have a Seeing Eye dog.” Not HAVE to, but GET to! I have thought of those words a thousand times, but mostly I have absorbed the concept of “have to” vs. “get to.” It has given me a fresh perspective on parenting and a summer spent every day with my children has given me the opportunity to adopt her philosophy. So swimming with the children has transformed from I’ll HAVE to wash the chlorine out of my hair, to I GET to dive to the bottom of the pool and see their faces close up when they pop up breathlessly. And, cooking has transformed from I’ll HAVE to pick egg shells out of the scorched scrambled eggs to I GET to feel her excitement and enthusiasm for success. Disciplining has morphed from I’ll HAVE to hear her whine and complain about an extra chore to I GET to see her mature as I watch her figure out how to unload the dishwasher unassisted. What a lesson she has taught me and I absolutely relish in the gift of “GETTING TO” experience my children in a way I never have before. It’s like taking a walk and slowly inhaling every fragrant flower, stopping to watch where the butterfly lands, and feeling the sun on your shoulders and breeze in your face. There is a consciousness in parenting that is often not intuitive, but so rewarding if we take the time.

As painful a diagnosis as Batten disease is, I feel incredibly thankful to know its destiny. It allows me to live in the moment with my children and affords me the opportunity to one day look back on the time I spent with them with no regrets. God is faithful to shine His light brightly in dark circumstances and often times through our children. I am enjoying my children from a new perspective: present, engaged and grateful. But as only God can do, I had to be in a place this dark to see a light that bright.