Finding Joy in Every Moment: A Letter from Xay’s Mom

Dear CCA Friends, 

Imagine being nine years old and having more medical diagnoses than you can countSpending months of your life in a hospital bed, instead of playing outside. My son, Xayhas been in and out of the hospital since the day he was born. He has epilepsy, chronic lung disease, spastic hemiplegic cerebral palsy, ADHD, an autoimmune disorder…but despite everything, Xay always finds a reason to smile. 

I feel so blessed to be Xay’s mom, and I want him to live a full, happy life. Children’s Cancer Association has helped give him that. At our most difficult moments, CCA has helped Xay experience the joys of childhood. Today, I want to share how your generous support helped our family find community, friendship, and most of all, joy.

Caring for a child with complex medical issues can be isolating and emotionally draining—but CCA’s JoyRx Mentorship program helped us feel less alone. Xay’s JoyRx Mentor, Doug, spent time with him in and out of the hospital, and it meant so much for Xay to have a friend who was there just for him; who could give him support and fun anytime he needed it. 

And when he was stuck in the hospital bedunable to get out and run aroundvisits with CCA’s JoyRx Music specialists lightened the mood. Xay has always loved music, and learning new songs and sharing his favorite tunes with music specialists, Cameron and Jean, made him feel, in his words, “10 out of 10 happy. Those were really special times because Xay just got to be a kid, rather than a kid in the hospital. 

One of Raelynn’s favorite family photos from a pre-COVID Oregon Beavers game

CCA also gave us amazing experiences we wouldn’t otherwise have had: tickets to a Blazer’s game, getting to pick out a holiday tree at a local farm. I don’t always have the energy to plan things myself, but it’s so important for Xay to be around other kids like him and experience things that healthy people might take for granted. I can’t describe how wonderful it is to see my son get to just be a kid—to not have to worry about his medical conditions, and to be loved and embraced for who he is.

When COVID hit, and Xay began isolating at home, CCA continued to provide us with fun activities and the supportive community we’d come to rely on. We enjoy attending CCA’s virtual events, like doing movie nights and playing “Name that Tune” on Zoom.  

When you’re caring for a seriously ill child, you live moment to moment, day to day. But Xay’s bright smile reminds me that joy is everywhere—you just have to look.  

 

With Joy,
Raelynn, Appreciative Mom

 

For Xay and so many other kids facing serious illness, Joy is more than a feeling—it’s a necessary part of healing.

You can help ensure access to the healing power of JoyRx by making a donation today. And, when you give during the month of April, you could DOUBLE your impact, thanks to a matching foundation. Thank you so much! 

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