Growing up, were you Ariel? Perhaps Cinderella or Jasmine? My personal favorite was Belle. Who wouldn’t want an endless supply of books and croissants at her fingertips? As I got older, I developed an appreciation for Toy Story. Imagine loving toys as a symbol of childhood, wonder and innocence. Sounds perfect. But it wasn’t until I became Charlie’s mom that I discovered the true magic of Disney. Amidst pokes, IVs, Foleys, and open heart surgeries, we found comfort and happiness in escaping to infinity and beyond with Andy and his crew. After Charlie’s second heart surgery, his pain was difficult to manage, and the only three things that eased his cries were seeing and hearing Buzz Lightyear’s suit, driving around quiet streets, and hopping along in my arms to silly songs (a lot from the Lion King soundtrack).
Fast forward to present day, and these things are marvelous memories of light in darkness. We’re at this beautiful place where Charlie’s lung complications are cleared, and his oxygen level is at a steady 95%. When we journey on magic carpet rides, it’s not as an escape from suffering and the unknown, it’s just simple boy and Mommy fun. I don’t know how long we will be out of the hospital. I don’t know when Charlie will need more medical assistance to help his brave heart that isn’t “fixed,” but I do know we have today. I do know that I love him more than Sully loves Boo. I know that with faith, trust and a little Pixie Dust, we can fly. My favorite? I know real life genies exist in our world – the lovely people at Make-A-Wish have granted Charlie’s wish:
WE’RE GOING TO DISNEY!!!
For us, it’s probably a once in a lifetime experience. It’s one that I hope Charlie can remember in great detail, but if not, I believe no amount of imagination and wonder is wasted in shaping a young child’s heart and mind. We’re experts at making impossible things possible, and we’re skilled at bringing about joy and silliness in the face of CHD and childhood illness. So imagine how easy it’ll be to laugh without trying…to smile without blinking back tears and fears….Though I’m sitting here writing, there really are no words to describe the pure elation that comes with planning a trip to the third most magical place on earth. (The number one position is in God’s hands and a mother’s embrace, and the second goes to Texas Children’s Hospital…all for saving Charlie’s life.) Still. Disney is loads more simplistic in it’s nature.
In February, Charlie will wear his Beads of Courage (concrete symbols for the very painful and real journey he’s taken) along with his Buzz jacket and heart surgery scars. I hope when people see him, they don’t just see a child with a critical illness, I hope they see resiliency and courage, faith and hope. It’s God’s love. I hope when you read this, you feel past the teensy tiny bit of, “Aw man. If only he were going to Disney because it’s a normal family vacation….” to fully experience the unbridled joy that comes with, “WOW! This guy has walked through the Valley of the Shadow of Death. Now? He’s walking into the magical kingdom. Cool story. A boy story and a toy story all in one.” Maybe play what I play to help keep me grounded and humble in the process of seeing my son being honored with a wish coming true…. “If I Didn’t Have You” by Billy Crystal & John Goodman.
- You’ve always got a friend in me and Charlie.
- No matter how your heart is grieving, if you keep on believing, the dream that you wish will come true.
- God is good.