I wish I could tell you the story of my daughter’s wish coming true and how she went on to heal from her condition. That’s not my story...but I’ll tell you about my special girl Lindsey.
Sixteen years ago, when we found out our baby would be born with Down syndrome and a serious heart defect, we had no idea the journey we were beginning. Our sweet, petite girl was born in 2001, and at four months of age had her first open heart surgery. It was successful, but somehow Lindsey’s lungs were damaged and she had to have a trach and was ventilator dependent for a few years.
Over the years she endured countless illnesses, hospital stays, procedures and surgeries. But somehow she grew and thrived. By age 5, she’d outgrown the need for a trach and had learned to walk.
Lindsey’s days were filled with school, therapies, doctor visits, learning and play. One thing I know for sure: she brought a smile to everyone who crossed her path. Lindsey was a shining light.
Because of all Lindsey lived through and because of her CHD (congential heart defect), one of her cardiologists referred her to Make-A-Wish, to have a wish granted. In spite of the fact that Lindsey could not tell me in her own words, I knew without a doubt what her fondest wish was: to meet Rachel Coleman of Signing Time, the American Sign Language DVD series Lindsey had watched all her life.
When Lindsey’s big day arrived, a limo transported us—her whole extended family—to a private concert and party with Rachel.
I knew Lindsey sometimes was shy and experienced anxiety in unfamiliar situations, so I wasn’t sure what her reaction would be to seeing Rachel right in front of her. But I shouldn’t have worried; within moments, Lindsey was up front with Rachel, signing and dancing. It was her party, and she was the star of the show.
As I sat and watched her, I could see the pure delight on her face, and I knew she was experiencing a dream come true.
That scene, the vision of Lindsey’s face aglow with joy and amazement, is what carried me through the next two months when she was unexpectedly hospitalized for a rare immune disease called HLH, a condition I’d never heard of before, and never imagined would happen to my child.
All those long days and nights by her bedside, I could close my eyes and remember her dancing to the music at Rachel’s side [during her wish].
As the disease ravaged her 14-year-old body, and the chemo caused her to waste away, I kept Lindsey’s wish day tucked close to my heart.
Lindsey passed away in December of 2015. Now that she’s gone from this earth, and memories are all I have, one of my most precious ones is of Lindsey’s face, lit up with delight, as her dream came true.
Our family will be forever grateful to Make-A-Wish and everyone that participated in making the wish happen, for giving us such joy and memories that we had no idea would quickly become priceless.