The Friend Who Helped Me Create Joy During a Difficult Journey
My husband, Billy, met his best friend, Aaron, while playing golf at high school. Aaron began dating his wife, Joy, when they were in college. Billy became their third wheel until I came along a few years later.
In our 20s, all four of us spent every weekend together while living in the city. We named our bowling team “Party’s Over in July” because we got married three weeks apart in July 2007. But we never anticipated that the name would foreshadow what was to come.
Following along in our parallel lives, our first daughter, Cammy, was born in March 2009, and theirs, Emma, the following January. Joy delivered Emma prematurely at 25 weeks. Emma spent the next several months in the neonatal intensive care unit fighting for her life. Their family found strength, love, and hope they had never known before. And Emma and Joy became my source of hope while I was searching for a diagnosis for Cammy.
A year later, in January 2011, Emma made incredible progress while Cammy was regressing. It was my turn to call Joy with difficult news. When I shared that Cammy had been diagnosed with Rett syndrome, Joy screamed into the phone and sobbed as if Cammy were her own.
The next day, I found a card from Joy on my doorstep. It was the first of many I’d find from her over the years. These cards helped carry me through the hardship of raising a child with Rett syndrome.
Joy understands that she can’t magically make the pain and the problems go away. She knows that there’s nothing she can say or do to fix it. More than anything, she understands that just being there to allow me to vent, cry, yell, and scream is the best medicine.
As a special education teacher, Joy has been there every step of the way during Cammy’s educational journey, as a guide and a resource. She has visited Cammy in the hospital and sent care packages countless times. Joy is our hope, strength, and inspiration. She is one of our Angel of Hope recipients, an award we give each year at our annual fundraiser to someone who has become a source of hope, strength, and joy for Cammy and our family.
Joy is Cammy’s fairy godmother.
In June 2019, it was Joy’s turn to call me with difficult news. The call was eerily similar to the one we had when Cammy was diagnosed. This time, however, I screamed into the phone and sobbed while Joy shared that she had breast cancer.
Once again, Joy took the lead with her words and actions by being a warrior full of strength, determination, courage, and hope. During her treatment, I tried to be at least a fraction of the friend she’s been for me over the years.
On June 10, 2020, Joy celebrated her 40th birthday, something she wasn’t sure would happen. Emma is now 12, and Cammy is 13. Emma has grown up to be a typical preteen. Cammy is still fighting Rett syndrome.
As Joy has often said since being diagnosed with breast cancer, “Something good has got to come out of this.” She started her own organization called Bringing Joy. Her mission is to help patients with cancer feel supported. She creates little bags of joy filled with items she found most helpful during her journey, such as gift cards for coffee, ChapStick, and socks.
I try to be more like Joy and spread joy. I’ll try to pay it forward and lift others up.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.