Today marks another year for me.
Each celebratory day means a great deal to me in terms of presence and not presents. I am trying to truly make the best of every day and cherish all that I have surrounding me that is joyful.
The past year has marked the start of Kelsey’s Kaleidoscope, Inc., advances in research around the globe on PAN and the gene deficiency causing the manifestation for Kelsey, dada2. In addition, over the past year, we have had the chance to connect with other families and other children who suffer as Kelsey does.
As a family, we have endured daily injections, four hospitalizations, not to mention the typical day-to-day challenges: the boy who was mean on the bus, writing the number 5 properly, mastering 30 subtraction problems in 90 seconds, and learning to tie shoes.
As a mother, I witnessed the magic of a child who connects print to meaning and the endless possibilities that open as a result. My son learned how to play the violin and I must admit, hearing him play Twinkle Twinkle Little Star brought me to tears. I met a mother who lost her son in a tragedy and watched her strength. She taught me about her Choosing Love movement that was born as a result of her suffering.
I have laughed with my kids, yelled at my kids, and snuggled with my kids. Every morning hug and afternoon homework struggle has been worth it because it has been uniquely mine.
As a wife, I have learned to be more open and appreciative. Though I cannot change circumstances, I can change how I talk about my feelings regarding them with those I love. In truth, I learn something more to love about my husband every day and I am grateful that he gives me strength, confidence, and the support to follow my personal and professional goals.
This year, I hope for peace, love, and happiness for all of the people who I know and love.